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38649847 abc-of-palliative-care-2nd-ed 38649847 abc-of-palliative-care-2nd-ed Document Transcript

  • ABC OFPALLIATIVE CARE SECOND EDITION Edited by Marie Fallon and Geoffrey Hanks Foreword by Derek Doyle
  • ABC OF PALLIATIVE CARE Second Edition Edited by MARIE FALLON St Columba’s Hospice Chair of Palliative Medicine, University of Edinburgh, Edinburgh and GEOFFREY HANKS Professor of Palliative Medicine, University of Bristol, Bristol Blackwell Publishing
  • © 1998 BMJ Books© 2006 by Blackwell Publishing LtdBMJ Books is an imprint of the BMJ Publishing Group Limited, used under licenceBlackwell Publishing, Inc., 350 Main Street, Malden, Massachusetts 02148-5020, USABlackwell Publishing Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UKBlackwell Publishing Asia Pty Ltd, 550 Swanston Street, Carlton, Victoria 3053, AustraliaThe right of the Authors to be identified as the Authors of this Work has been asserted in accordancewith the Copyright, Designs and Patents Act 1988.All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, ortransmitted, in any form or by any means, electronic, mechanical, photocopying, recording orotherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the priorpermission of the publisher.First published 1998Second edition 20061 2006Library of Congress Cataloging-in-Publication DataABC of palliative care/edited by Marie Fallon and Geoffrey Hanks. — 2nd ed. p. ; cm. “BMJ Books.” Includes bibliographical references and index. ISBN-13: 978-1-4051-3079-0 (alk.paper) ISBN-10: 1-4051-3079-2 (alk.paper) 1. Palliative treatment. 2. Terminal care. I. Fallon, Marie. II. Hanks, Geoffrey W. C. [DNLM: 1. Palliative Care—methods. 2. Palliative Care—psychology. 3. Terminal Care.WB 310 A134 2006] R726.8.A23 2006 616 .029—dc22 2006009883ISBN-13: 978 1 4051 3079 0ISBN-10: 1 4051 3079 2A catalogue record for this title is available from the British LibraryCover image is courtesy of John Cole/Science Photo LibrarySet in 9/11 pt by Newgen Imaging Systems (P) Ltd, Chennai, IndiaPrinted and bound in Singapore by COS Printers Pte LtdCommissioning Editor: Eleanor LinesDevelopment Editors: Sally Carter, Nick MorganSenior Technical Editor: Barbara SquireEditorial Assistants: Francesca Naish, Victoria PittmanProduction Controller: Debbie WyerFor further information on Blackwell Publishing, visit our website:http://www.blackwellpublishing.comThe publisher’s policy is to use permanent paper from mills that operate a sustainable forestry policy,and which has been manufactured from pulp processed using acid-free and elementary chlorine-freepractices. Furthermore, the publisher ensures that the text paper and cover board used have metacceptable environmental accreditation standards.Blackwell Publishing makes no representation, express or implied, that the drug dosages in this bookare correct. Readers must therefore always check that any product mentioned in this publication is usedin accordance with the prescribing information prepared by the manufacturers. The author and thepublishers do not accept responsibility or legal liability for any errors in the text or for the misuse ormisapplication of material in this book.
  • Contents Contributors vi Foreword viii 1 The principles of palliative care 1 Balfour Mount, Geoffrey Hanks, Lorna McGoldrick 2 The principles of control of cancer pain 4 Marie Fallon, Geoffrey Hanks, Nathan Cherny 3 Difficult pain 8 Lesley Colvin, Karen Forbes, Marie Fallon 4 Breathlessness, cough, and other respiratory problems 13 Carol Davis, Gillian Percy 5 Oral health in patients with advanced disease 17 Jeremy Bagg, Andrew Davies 6 Anorexia, cachexia, nutrition, and fatigue 21 Kenneth Fearon, Matthew Barber 7 Nausea and vomiting 25 Kathryn Mannix 8 Constipation, diarrhoea, and intestinal obstruction 29 Nigel Sykes, Carla Ripamonti, Eduardo Bruera, Debra Gordon 9 Depression, anxiety, and confusion 36 Mari Lloyd-Williams10 Emergencies 40 Stephen Falk, Colette Reid11 The last 48 hours 44 James Adam12 Palliative care for children 48 Ann Goldman13 Communication 52 David Jeffrey14 The carers 56 Julia Addington-Hall, Amanda Ramirez15 Chronic non-malignant disease 59 Marie Fallon, Joanna Chambers, Francis Dunn, Raymond Voltz, Gian Borasio, Rob George, Roger Woodruff16 Community palliative care 68 Keri Thomas17 Bereavement 74 Marilyn Relf18 Complementary therapies 78 Michelle Kohn, Jane Maher Index 83 v
  • ContributorsJames Adam Karen ForbesConsultant in Palliative Medicine, Hunter’s Hill Marie Curie Macmillan Professorial Teaching Fellow in Palliative Medicine,Centre, Glasgow Department of Palliative Medicine, Bristol Haematology and Oncology Centre, BristolJulia Addington-HallProfessor of End-of-Life Care, University of Southampton Rob George Consultant in Palliative Medicine, Meadow House Hospice,Jeremy Bagg MiddlesexProfessor of Clinical Microbiology, Glasgow Dental Hospitaland School, Glasgow Ann Goldman CLIC Consultant in Palliative Care, Great Ormond Street Hospital for Children, LondonMatthew BarberConsultant Surgeon, Edinburgh Cancer Centre, Edinburgh Debra Gordon Clinical Nurse Specialist in Palliative Medicine, WesternGian Borasio General Hospital, EdinburghInterdisciplinary Palliative Care Unit, Department ofNeurology, Munich, Germany Geoffrey Hanks Professor of Palliative Medicine, University of Bristol, BristolEduardo BrueraProfessor of Oncology, UT MD Anderson Cancer Center, David JeffreyHouston, Texas, USA Consultant in Palliative Medicine, Borders General Hospital, ScotlandJoanna ChambersConsultant in Oncology and Palliative Medicine, Southmead Michelle KohnHospital, Bristol Complementary Therapy Adviser, LondonNathan Cherny Mari Lloyd-WilliamsDirector of Cancer Pain and Palliative Medicine, Share Zedek Professor, Academic Palliative and Supportive Care Studies Group,Medical Center, Jerusalem, Israel Division of Primary Care, University of Liverpool, LiverpoolLesley Colvin Lorna McGoldrickConsultant Anaesthetist, Department of Clinical Neurosciences, Clinical Nurse Specialist, Palliative Care, Western GeneralWestern General Hospital, Edinburgh Hospital, EdinburghAndrew Davies Jane MaherConsultant in Palliative Medicine, Royal Marsden Hospital, Consultant Oncologist, Mount Vernon Cancer Centre,London Middlesex Kathryn MannixCarol Davis Consultant in Palliative Medicine, Marie Curie Centre,Consultant in Palliative Medicine, Moorgreen Hospital, Newcastle-upon-TyneSouthampton Balfour MountFrancis Dunn Professor of Palliative Medicine, Department of Oncology,Consultant Cardiologist, Stobhill Hospital, Glasgow McGill University, Montreal, Quebec, CanadaStephen Falk Gillian PercyConsultant in Clinical Oncology, Bristol Haematology and Clinical Specialist Physiotherapist, Moorgreen Hospital,Oncology Centre, Bristol SouthamptonMarie Fallon Amanda RamirezSt Columba’s Hospice Chair of Palliative Medicine, University Professor of Liaison Psychiatry, Institute of Psychiatry,of Edinburgh, Edinburgh King’s College, LondonKenneth Fearon Colette ReidProfessor of Surgical Oncology, University of Edinburgh, Research Fellow in Palliative Medicine, Bristol HaematologyEdinburgh and Oncology Centre, Bristolvi
  • ContributorsMarilyn Relf Keri ThomasHead of Education, Churchill Hospital, Oxford Macmillan GP facilitator, ShrewsburyCarla Ripamonti Raymond VoltzPalliative Care Physician, National Cancer Institute of Milan, Consultant Neurologist, Institute for ClinicalMilan, Italy Neuroimmunology, Munich, GermanyNigel Sykes Roger WoodruffMedical Director, St Christopher’s Hospice, Sydenham, Director of Palliative Care, Austin and Repatriation Centre,London Heidelberg, Victoria, Australia vii
  • ForewordIt is almost impossible for a health care professional to avoid being called upon to care for people getting frailer as life ebbs away, tocare for them at their dying and to have to help and support their loved ones afterwards. Who can be insensitive to their pain, theirbreathlessness, their weakness and their fears? Who can forget how helpless they have felt at these times, how lost for words, howunskilled and unprepared. Doctors and nurses, whether generalist or specialist, can no more avoid these professional and personalchallenges than they can deny or avoid death itself. Palliative care – “the care of patients with active, progressive, advanced disease where the prognosis is short and the focus of care is the qualityof life” – is a basic human right, not a luxury for the few. Its principles are not peculiar to the care of the dying but are the integralfeatures of all good clinical care – freedom from pain and the alleviation so far as is possible, of all physical, psychosocial and spiritualsuffering; the preservation of dignity; the utmost respect for honesty in all our dealings with these patients and their relatives. The emergence in 1987 of palliative care as a medical sub-specialty (mentioned in the Preface to the first edition of this book)has brought about improvements in care, research, professional education and training, and in the understanding by the public andthe politicians of what needs to be done and what can be done for those at the loneliest time on their life journey. It has also had adownside. Many have come to suspect that providing palliative care requires unique people to do justice to this demanding work,unique skills to do it well, and more time than today’s doctors and nurses ever have. So easy is it to phone a palliative care specialistwhether working in a hospital, a specialist unit or in the community, and get advice or an admission that some are leaving thepalliative care of their patients to them. In fact only about 10% of terminally ill patients have problems so rare or so complex thatspecialist expertise is needed. All the others can be cared for by non-specialists if they learn the principles of palliative care, if theydevelop the right attitude to it, if they are willing to share themselves as well as their therapeutic skills… and if they study this book.One thing is undeniable – no-one is born with a built-in ability to provide excellent care. It has to be learnt from a book such as this,and hopefully from watching others with more experience, but that is a luxury some never have. In situations where too often the knee-jerk response can be “there is no more we can do”, the reader will find that there is alwaysa means of helping and of caring. It may be pharmacological or psychological, nursing or physiotherapy, occupational therapy, musicor art therapy, or complementary medicine. Often it may be no more, no less than enabling patients to open their hearts in thatatmosphere of safety created by the doctor or nurse who has learned to be honest, and is humble enough to listen and to learn. The reader will be surprised at how richly rewarding palliative care can be; how surprisingly often terminally ill patients speak ofthe sense of safety they feel when suffering has been relieved and they know everyone is being honest with them and the loved onesthey will leave behind. This can happen anywhere – in a hospital, in a hospice, in a nursing home or in someone’s home. This excellent book produced by editors and contributors with international reputations deserves to be read by every doctor andnurse who will ever offer palliative care – and that means most of us! Derek Doyle Retired consultant in palliative medicine Vice President, National Council for Palliative Care Founding Member and Adviser, International Association for Hospice and Palliative Careviii
  • 1 The principles of palliative careBalfour Mount, Geoffrey Hanks, Lorna McGoldrickComponents of palliative care Palliative care is the approach that improves the quality of life of patients and their families facing the problemsPalliative care is recognised by individualised, holistic models of associated with life threatening illness, through thecare, delivered carefully, sensitively, ethically, and prevention and relief of suffering by means of earlytherapeutically by using skilled communication with attention identification and impeccable assessment and treatmentto detail, meticulous assessment, and advancing knowledge. of pain and other problems, physical, psychosocial, and Wherever palliative care is used, its core ingredient is the spiritual (World Health Organization, 2005)quality of presence that the caregiver brings to the patient, away of caring that enables discernment of the ongoing needs ofthe patient and family as they evolve and emphasises beingalongside them. The focus is on all that is still possible in thistime of multiple losses, the patient’s and family’s quest formeaning, and sustaining their experience of connectedness asthey adapt to the challenges of the moment. The term “palliative care” implies a personalised form ofhealth care. It extends the healthcare professional’s mandatebeyond the biomedical model to the wider horizon necessary ifone is to attend to suffering as well as the biology of disease,caring as well as curing, quality of life as well as quantity of life. HealingThe patient and family or significant others are taken together asthe unit of care in assessment of needs related to illness. The aim Experience Quality of life Experience of suffering and of wholenessof palliative care is to support optimal quality of life and to foster anguish and integrityhealing—that is, a shift in response towards an experience ofintegrity and wholeness on the continuum of the quality of life. WoundingBeyond the physical The quality of life continuumMeticulous attention to the alleviation of symptoms is thefoundation of care of the whole person. Important psychosocialand spiritual concerns may be eclipsed by the presence ofuncontrolled pain, nausea, constipation, and the other symptomsof advanced disease. Optimal treatment demands carefulassessment of the multiple contributory factors to each symptom.If increasing doses of opioid are prescribed in response to painthat is escalating due to unrecognised existential anguish, theresult will be persistent pain, opioid toxicity, and ongoing distressfor the patient, family, and caregivers. If we are body, mind, andspirit, those domains are inseparable and interdependent.Thoughtful assessment of each complaint should be consideredin the context of the patient’s total suffering; therefore Palliative care: selected philosophical perspectives andthoughtful assessment is mandatory. assumptions G Nothing matters more than the bowels (Cecily Saunders)Not just symptom control G Humanise, personalise, de-institutionaliseControl of symptoms in palliative care commonly involves the G Clinical care grounded in qualitative and quantitative inquiryconcurrent use of six to eight or more medications. The goal is G Experience of illness viewed as a narrative: relational,consistently to prevent rather than treat symptoms. Effective meaningful, filled with potential G Assist progressive understanding of reality at a rate acceptable tomanagement depends on frequent adjustment to consistently the patientsustain the minimal effective doses of medication and an G “Reality” as illusion; subjectivity of experience; acknowledgmentemphasis on skilled nursing care as well as the use of the of mysterycomplementary skills of an interdisciplinary team experienced G Quiet efficiency, not hustle and bustlein end of life care. G Focus on quality of living in the present moment, not death Laboratory investigations—and even such non-invasive G Accompaniment: empathic presence to the other in the momentroutines as monitoring blood pressure, pulse, and G Team: led by the patient; egalitarian rather than hierarchical G Environment: centred on the patient, welcoming, peacefultemperature—are undertaken only if doing so may lead to G Uniqueness, limitations, defences of the patient/familyinterventions that will enhance the quality of life. G Healing of psyche: an innate potential Palliative care is founded on a philosophy that promotes G Potential for adaptation, integration, reconciliation,sensitivity to cultural, religious, sexual, and other defining transcendenceperspectives from the patient’s point of view; the intent to meet G Importance of compassion, celebration, community, paradox,patients where they are rather than where the caregivers feel humour G With unresolved symptoms, “Review! Review! Review!” (Robertthey should be; sensitivity to the determinants of coping, Twycross)particularly concerning major existential challenges for the 1
  • ABC of palliative carepatient, family, and caregivers (death; isolation; freedom—the Initial hospice programmes:absence of external structure; meaning); attention to the predominantly oncology and selected neurodegenerative diseasesmeaning of the illness for the patient, family, and caregivers; and Life prolonging therapy Palliative careattention to the need for relating to people in an empathic way. Palliative care relevance, current view:Application all end stage diseases and clinical settings Life prolonging therapyThe early successes of hospice care in alleviating the suffering of Palliative carepatients with cancer and those with motor neurone disease andsome other neurodegenerative diseases at the end of life has led Changes in allocation of resources with the development of palliative carenow to broad agreement concerning the relevance of palliativecare across the spectrum of disease and healthcare settings. Palliative careCare delivery G Affirms life and regards dying as a normal practice G Neither hastens nor postpones deathConsiderations in the provision of palliative care include a G Provides relief from pain and other distressing symptomsseamless continuity of care appropriate to the needs of the G Integrates the psychological and spiritual aspects of carepatient and the family, with options that include home care; G Offers a support system to help patients live as actively as possiblechronic inpatient care; acute, specialised inpatient (tertiary) until death G Offers a support system to help the families of patients copecare; consultation services available for those still receiving during the patient’s illnesses and in their own bereavementtreatment to modify the disease; day care with resources formultidisciplinary assessment; bereavement support for those atrisk of a complicated grief reaction. Essential components of palliative careSpecialist role G Control of symptoms G Effective communicationGeneral palliative care is practiced widely in specialties other G Rehabilitationthan palliative care. Multiprofessional teams who work full time G Continuity of carein palliative care, and are trained beyond the basic level, deliver G Terminal carespecialist palliative care. They aim to care for those patients and G Support in bereavementcarers who have complex physical, psychosocial, or spiritual G Education G Researchneeds that are difficult to manage. Their role is primarily aboutadvice, support, and education when they work alongside otherspecialties. Hospices and hospice wards have more directmanagement of patients and carers in an inpatient setting. Rolemodelling, service development in line with local, national, andWHO guidelines, education, and research are furthercomponents of the role.Multidisciplinary teamsCaring for patients and carers at a difficult time is synonymouswith palliative care. Each patient and carer will require aunique and individualised approach to incorporate all theirbiopsychosocial and spiritual needs. There cannot be auniversal optimum model for the delivery of care; adaptabilityand flexibility is paramount, and this is an increasing challengein today’s healthcare systems. A single profession, like a single model of care, can only failto meet the holistic fluctuating needs of patients and carers.The knowledge and skill of many professions—medical,nursing, pharmacy, social work, physiotherapy, occupationaltherapy, and chaplaincy—held together by endlesscommunication and teamwork is vital.Future challenges Dame Cecily Saunders, founder of St Christopher’s Hospice (reproduced with permission)New and evolving challenges in palliative care are emerging aspatients live longer with improved palliative tumoricidaltreatments. Symptoms that are difficult to control and arechronically debilitating test the resilience and resources ofweary patients, carers, and providers of health care. Educationand robust multiprofessional support are necessary to equipthose working in palliative care with the sustainable resilience2
  • The principles of palliative caredemanded by an unwavering quality of presence that continuesto effectively focus on quality of life and care and attend tosuffering of patients with longer and more difficultexperiences. Without research, advances in the science of control ofsymptoms and quality of care will stagnate and palliative care Further readingwill cease to meet the future needs of patients with advanced G Cassell EJ. The nature of suffering and the goals of medicine. 2nd ed.life threatening illnesses and their carers. Though there are New York: Oxford University Press, 2004. G Doyle D, Hanks GW, Cherny N, Calman K, eds. The Oxford textbooknumerous epidemiological surveys outlining problems, few of palliative medicine. 3rd ed. Oxford: Oxford University Press,researchers do good quality interventional studies or try to 2004.extend knowledge through collaboration with basic science. G Halpern J. From detached concern to empathy: humanizing medicalMore collaborative research involving basic science and other practice. New York: Oxford University Press, 2001.appropriate specialties is needed urgently. G Kearney M. A place of healing: working with suffering in living and The late Dame Cecily Saunders and her vision of combining dying. Oxford: Oxford University Press, 2000. G Saunders C, Sykes N. The management of terminal disease. 3rd ed.optimum care, observation, and appropriate research London: Edward Arnold, 1993.established the essential ingredients of modern palliative care; G Yalom ID. Existential psychotherapy. New York: Basic Books, 1980.this should remain our basis for the future. 3
  • 2 The principles of control of cancer painMarie Fallon, Geoffrey Hanks, Nathan ChernyPain is a complex phenomenon which is the subjectiveendpoint of a variety of physical and non-physical factors. For Physical pain Integrated pain and • Other symptoms mood pathwaysmost patients, physical pain is only one of several symptoms of • Adverse effects of treatmentcancer. Relief of pain should therefore be seen as part of acomprehensive pattern of care encompassing the physical, Depression Angerpsychological, social, and spiritual aspects of suffering. Physical • Loss of social position • Bureaucratic bungling • Loss of job prestige • Delays in diagnosisaspects of pain cannot be treated in isolation from other and income • Unavailable physiciansaspects, nor can patients’ anxieties be effectively addressed • Loss of role in family Total pain • Uncommunicativewhen patients are suffering physically. The various components • Insomnia and chronic physicians fatigue • Failure of therapymust be addressed simultaneously. • Sense of helplessness • Friends who do not Our understanding of the basic mechanisms of pain has • Disfigurement visitimproved considerably over the past few years. Thisunderstanding has included a greater appreciation of the Anxiety • Fear of hospital or nursing homerelationship between the physical injury, pain pathways, and • Fear of painour emotional processing of this information; these factors are • Worry about family and finances • Fear of deathinterlinked in the nervous system, rather than working in • Spiritual unrest, uncertainty about futureparallel. We now understand from basic science more of themechanisms of total pain than ever before. It is clear that Factors affecting patient’s perceptions of pain (adapted from Twycross RG,anxiety, fear, and sleeplessness feed into the limbic system and Lack SA, Therapeutics in terminal disease, London: Pitman, 1984)cortex. In turn, the brain talks back to the spinal cordmodifying pain input at spinal levels. This then feeds back tothe brain and a loop is established. Analgesic drugs commonly recommended for Mood disturbance is common in patients with uncontrolled cancer paincancer pain and may need specific management, however,sometimes it will improve dramatically with effective resolution Mild pain G Aspirin 600 mg four times a dayof pain. Hence the first principle of managing cancer pain is an G Paracetamol 1 g four times a dayadequate and full assessment of the cause of the pain, bearing Moderate painin mind that most patients have more than one pain. With G Codeine 60 mg (plus non-opioid drug) four timeseffective assessment and a systematic approach to the choice of a dayanalgesics using the WHO’s three step analgesic ladder, over Severe pain80% of cancer pain can be controlled with the use of G Morphine 5–10 mg (starting dose) every fourinexpensive drugs that can be self administered by mouth at hoursregular intervals.The WHO analgesic ladder Non-drug treatments used in management of cancer painThe analgesic ladder remains the mainstay of our approach to G TENS (transcutaneous electrical nerve stimulation)analgesia, though this was never designed for use in isolation. G PhysiotherapySurgery, radiotherapy, and appropriate tumoricidal treatments G Acupuncturewill have an important role in some patients, as will non-drug G Relaxation therapytreatments. A combined approach can lead to optimumanalgesia with minimum side effects. Analgesic drugs do, however, remain key in managingcancer pain. The choice of drug should be based on theseverity of the pain, not the stage of disease. Drugs should be Freedom from cancer painadministered in standard doses at regular intervals in a stepwise 3 Opioid for moderate to severe pain epfashion. If a non-opioid or, in turn, an opioid for moderate ± Non-opioid St ± Adjuvantpain is not sufficient, an opioid for severe pain should be used. When a non-opioid drug is used with an opioid for Pain persisting or increasing 2 epmoderate pain, many patients find combination formulations Opioid for mild to moderate pain Stmore convenient to use. Care must be taken with the dose of ± Non-opioid ± Adjuvanteach drug in the formulation; some combinations of codeine 1or dihydrocodeine with aspirin or paracetamol (including co- Pain persisting or increasing ep Stcodamol and co-dydramol) contain subtherapeutic doses of the Non-opioidopioid. The decision to use an opioid for severe pain should be ± Adjuvantbased on severity of pain and not on prognosis. Pain WHO analgesic ladder (adapted from WHO’s Cancer pain relief and palliative care technical report series 804)4
  • The principles of control of cancer painAdjuvant analgesics Common adjuvant analgesics for cancer painAdjuvant analgesic drugs may be usefully added at any stage. Drugs IndicationsAn adjuvant analgesic is a drug whose primary indication is for Non-steroidal anti- Bone painsomething other than pain but that has an analgesic effect in inflammatory drugs Soft tissue infiltrationsome painful conditions. Examples are corticosteroids, non- Hepatomegalysteroidal anti-inflammatory drugs, tricyclic antidepressants, Corticosteroids Raised intracranial pressureanticonvulsants, and some antiarrhythmic drugs. Soft tissue infiltration Nerve compressionTricyclic antidepressants and anticonvulsants HepatomegalyTricyclic antidepressants are effective in relieving neuropathic Antidepressants Nerve compression or infiltrationpain. There are no significant differences in efficacy between Anticonvulsants Paraneoplastic neuropathiesthe different tricyclic antidepressants, though unfortunately, Antiarrhythmicsside effects often limit their use. While the evidence for Bisphosphonates Bone painvenlafaxine is less strong, its use can be justified, particularly inpatients with both neuropathic pain and low mood. There is alack of high level evidence of the efficacy of selective serotonin Fear, anxiety, sleep, Locationreuptake inhibitors (SSRIs) for treating neuropathic pain. punishment, and The anticonvulsants carbamazepine, phenytoin, sodium autonomic changes intensity Cortexvalproate, clonazepam, gabapentin, and pregabalin are Limbic system Attention Thalamuseffective in treating neuropathic pain. Benefit is independent VPLof the characteristics of the pain. Gabapentin and pregabalin Parabrachial PAGare licensed for treatment of neuropathic pain. There is no measurable difference in the analgesic benefit RVM Dorsal columns The brain canof the two drug classes (tricyclic antidepressants or + – talk back toanticonvulsants) in neuropathic pain or in the number of the spinal cordpatients needed to treat before a minor or major adverse effect Lamina Ioccurs. Gabapentin and pregabalin, however, can have fewer Spinal Peripheralside effects in many patients, though systematic examination of changes mechanismsthis is awaited in patients with cancer pain. and spinal inputs Patients with neuropathic pain should have a trial of a Lamina Vtricyclic antidepressant or venlafaxine or an anticonvulsant. Motor activation/autonomicThe choice of drug should be based on relative Integration of pain and emotion at higher centres. With permission fromcontraindications, possible drug interactions, and risk of side Professor A. Dickensoneffects for each patient. Antidepressants and anticonvulsantsmay occasionally be prescribed simultaneously, though it isgood clinical practice to introduce only one drug at a time.Opioid analgesics for severe pain The skilled use of morphine will confer benefit rather thanMorphine is the most commonly used opioid in this group. harm, but many patients express fears, which should beWhen possible, it should be given by mouth, the dose tailored discussedto each patient, and doses repeated at regular intervals so thatthe pain is prevented from returning. There is no arbitraryupper limit, but negative attitudes to using morphine still exist. Opioid alternatives to morphine Dose titration—A normal release formulation of morphine G Hydromorphone—Titration is usually with hydromorphone normal(either elixir or tablet), with a rapid onset and short duration of release capsules; when pain is controlled, patients may convert toaction, is preferred for dose titration. The simplest method is to controlled release preparation. As it is about seven times strongerprescribe a regular four hourly dose but allow extra doses of the than morphine, care is needed with patients with no previoussame size for “breakthrough pain” as often as necessary. After 24 exposure to opioidsor 48 hours, the daily requirements may be reassessed and the G Oxycodone—Can be up to 1.5 times stronger than morphine.regular dose adjusted as necessary. This process is continued Similar titration as morphine and hydromorphone G Methadone—see chapter 3, Difficult painuntil pain relief is satisfactory. By this method, the many factors G Fentanyl—Self adhesive patches provide transcutaneous deliverythat contribute to the variability in dose are taken into account. of strong opioid. The patch is changed once every 72 hours. It isThese include the severity of the pain, the type of pain, the used with normal release morphine for breakthrough pain. It isaffective component of pain, and variation in pharmacokinetic suitable only for patients whose pain is stable because of the timeparameters. The regular four hourly dose may range from required to titrate the dose upwards. It takes up to 24–48 hours5–10 mg to 250 mg (or the equivalent in controlled release before peak plasma concentrations are achieved G Buprenorphine—Transdermal, as above, and may have advantagestablets). The dose is titrated against effect, though few patients in patients with renal dysfunctionneed high doses—with most requiring 200 mg a day. G Diamorphine, limited availability, is a semisynthetic derivative and Maintenance dose—Patients with advancing disease and a prodrug of morphine. Use of oral diamorphine is an inefficientincreasing pain may require continual adjustment of dose. For way of delivering morphine to the body, but, for parenteralmany patients, however, there is a period of stability during administration, its greater solubility confers an advantage overwhich the dose required remains unchanged or needs only morphinesmall adjustments, and this may last for weeks or months or G Pethidine is a short acting opioid and not appropriate for the management of chronic painsometimes longer. Once pain is relieved, maintenance will be 5
  • ABC of palliative carewith a controlled release preparation of morphine. Controlledrelease morphine is available as a once daily preparation thatremains effective for 24 hours or a twice daily preparation witheffects that last 12 hours.Alternative routes of administrationThe rectal bioavailability of morphine is similar to its oralbioavailability, and it is available in suppository form. The rectalroute may be appropriate for patients unable to take drugs bymouth, and the same dose as that taken orally should be givenevery four hours. For many patients, however, it may be more convenient to Portable syringe driver for automatic drug infusionconvert directly to a subcutaneous infusion of opioid via aninfusion device such as a portable, pocket sized, syringe driver.This simple technique allows continuous infusion of opioidanalgesics in patients unable to take drugs by mouth. Therelative potency of opioids is increased when they are givenparenterally: the oral dose of morphine should be halved to getthe equianalgesic dose of subcutaneous morphine and halvedor divided by three for subcutaneous diamorphine, dependingon the clinical situation. Rarely, patients may require intravenous administration,which can be appropriate for those with an indwelling centralline, particularly children.Which opioid for cancer pain?Comparative trials of opioids in cancer pain are extremelydifficult to perform and do not always answer our questionsbecause of the complexity of the populations studied. A tensionexists between the need to have good quality randomised Rationale for alternative opioidscontrolled trials to provide evidence for pharmacotherapy of G Basic pharmacology of the drug and particular propertiescancer pain and the appropriateness and complexities of such relating to renal, hepatic, and cognitive impairmenttrials in patients with advanced cancer. G Progress in basic science, which has illuminated the genetic differences between individuals in response to opioids No strong evidence supports the superiority of one opioidover another. However, the balance between analgesia and sideeffects varies among opioids because of factors such aspharmacokinetic profiles, routes of administration, and geneticvariability in opioid responses. The transdermal route, which can be used with fentanyl ortransdermal buprenorphine, can be useful in patients withswallowing difficulties. Oxycodone or hydromorphone mayprovide an alternative to morphine if hallucinations ordisturbed sleep are troublesome. Any opioid can accumulate in patients with renaldysfunction. It is clear we do not fully understand the variousmetabolites from different opioids. Care should always be takenand in such patients opioid doses should generally be lower Common adverse effects of opioidsthan normal, with increased intervals between doses, or even G Sedation—Some sedation is common at the start of treatment,administered on an “as required” basis. It is usually acceptable but in most patients it resolves within a few daysto consider use of drugs such as fentanyl, alfentanil, G Nausea and vomiting—Nausea is common in patients taking oralhydromorphone, and buprenorphine. morphine, vomiting rather less so. These are initial side effects and usually resolve over a few days, but they can easily be controlled—metoclopramide (10 mg every eight hours) orTolerance, addiction, and physical haloperidol (1.5 mg at night or twice daily) is effective for most patientsdependence G Constipation develops in almost all patients and should be treated prophylactically with laxativesTolerance to opioids is rarely seen in the clinical practice of G Dry mouth is often the most troublesome adverse effect formanaging cancer pain. Requirements for increasing doses of patients. Patients should be advised on simple measures tomorphine can usually be explained by progressive disease combat this, such as frequent sips of iced drinks, saliva replacements, or saliva stimulantsrather than pharmacological tolerance. Psychological dependence or addiction is not a problem,except in some patients with pre-existing addiction. Ifalternative methods of pain control are used (such as nerve6
  • The principles of control of cancer painblocks) it is usually possible to reduce the dose of the analgesicor even withdraw it without adverse psychological effects.Physical dependence can occur, and this physiological responsecan manifest itself as a flu-like illness in some patients if anopioid is discontinued suddenly. This can be managed easily bya more gradual withdrawal of the opioid. Factors that affect the ability to tolerate opioidsOpioid toxicity G The degree of responsiveness of the pain to opioid analgesiaThere is wide variation, both between individuals and within G Previous exposure to opioidsindividuals over time, in the dose of opioid that can be G Rate of titration of the dosetolerated. Though toxicity can be frightening and life G Concomitant medicationthreatening, it is usually reversible if it is diagnosed early. G Concomitant disease Opioid toxicity may present as subtle agitation, seeing G Genetic factors G Biochemical factors such as renal functionshadows at the periphery of the visual field, vivid dreams, visualand auditory hallucinations, confusion, and myoclonic jerks.Agitated confusion may be misinterpreted as uncontrolled painand further opioids given. A vicious cycle then follows, in whichthe patient is given sedation and may become dehydrated,resulting in the accumulation of opioid metabolites and furthertoxicity. Management includes reducing the dose of opioid,ensuring adequate hydration, and treating the agitation withhaloperidol (1.5–3 mg orally or subcutaneously, repeatedhourly as needed). If toxicity is severe and opioid analgesia isstill needed, then a switch in opioid usually leads to a fasterrecovery. If a different opioid is required, a lower dose than theequianalgesic dose should usually be prescribed. Before the more sophisticated use of opioids, opioid toxicitywas often mislabelled as “terminal agitation.”Opioid responsivenessSome pains do not respond well to opioids. Although no paincan be assessed as unresponsive to opioids before a carefultherapeutic trial of the drug, some pains are more commonlyunresponsive. These include bone pain related to movement Further readingand some cases of neuropathic pain. Adjuvant drugs, G Doyle D, Hanks G, Cherny NI, Calman K. Oxford textbook ofradiotherapy, and anaesthetic block techniques may be helpful palliative medicine. Oxford: Oxford University Press, 2003.in such cases. Radiotherapy provides effective relief of pain G Sykes N, Fallon M. Cancer pain. Arnold: 2002. G WHO Expert Committee. Cancer pain relief and palliative care.from bone metastases in about half of cases—a single fraction is World Health Organ Tech Rep Ser 1990;804:1–75.often sufficient, thus avoiding frequent hospital visits. Problemswith difficult pain will be addressed in the next chapter. 7
  • 3 Difficult painLesley Colvin, Karen Forbes, Marie FallonPain occurs in up to 70% of patients with advanced cancer, andin about 65% of patients dying from non-malignant disease. Formost of these patients (about 80%) pain can be controlled byusing a simple, stepwise approach and a limited number of oralanalgesics as set out in the WHO’s analgesic ladder (chapter 2).About 10% of patients will require more complex, sometimesinvasive, management to control their pain, leaving another10% with cancer pain that is difficult to control. This group of patients with “difficult pain” present complexmanagement problems. Their pain often falls into one of threecategories: it responds poorly to opioids, it is episodic andbreaks through despite background opioid analgesia, oropioids are irrelevant in its management.Opioid irrelevant painPain is not just a physical experience. Patients with pain that Computed tomography scan showing advanced pelvic disease from colorectal tumour resulting in severe paindoes not respond to escalating doses of opioids should bereassessed and other contributors to their pain explored. “Totalpain” is best treated by exploring the underlying issues, ratherthan using opioids. The term “total pain” is used to describe thefinal sensation of pain perceived by a patient, acknowledgingthat this perception can be exaggerated by factors other than a Patients may be overwhelmed by their situation and thephysically noxious stimulus—for example, psychosocial distress. central nervous system can express this as physical pain, though social, psychological, or spiritual factors may be major componentsPain that responds poorly to opioidsThe European Association for Palliative Care (EAPC) guidelineson the use of morphine and alternative opioids in cancer painconfirm oral morphine as the opioid of choice for moderate tosevere pain. Dose titration with normal release morphine every About 10% of patients will have pain that responds poorly tofour hours, with the same dose for breakthrough pain as opioids and is uncontrolled even with a dose of morphine sufficient to give them intolerable side effectsrequired, is suggested. The patient’s 24 hour morphinerequirement can then be reassessed daily and their regular doseadjusted accordingly. Measures to treat such patients includeexploring psychosocial issues, managing the side effects,reducing the dose of opioid, switching to an alternative opioid,or changing the route of administration. The use of adjuvantdrugs or co-analgesics may be appropriate, depending on thecause of the pain. Many such patients will have neuropathic pain.Neuropathic painNociceptive pain results from real or potential tissue damage.Neuropathic pain is caused by damage to the peripheral orcentral nervous system. A simple definition is “pain in an area ofabnormal sensation.” Pain may be described as aching, burning,shooting, or stabbing and may be associated with abnormalsensation; normal touch is perceived as painful (allodynia). Itmay be caused by tumour invasion or compression but also bysurgery, radiotherapy, and chemotherapy. Many patients haveneuropathic pain that responds to opioids, and so initialmanagement should include a trial of opioids. Patients whoremain in pain will require additional measures. The early addition of adjuvant analgesics, such as a tricyclicantidepressant or an anticonvulsant, should be considered. Thenumber needed to treat is 3 for both categories. There is noevidence for a specific adjuvant for specific descriptors of Classical changes associated with a brachial plexopathy due to a rightneuropathic pain. Pancoast tumour: oedema, trophic changes, muscle wasting8
  • Difficult pain In addition, there is no evidence for combining adjuvants.In clinical practice, an adjuvant is chosen for an individualpatient after all symptoms and potential side effects areconsidered. Doses should be titrated to balance analgesia withadverse effects. If titration has reached a limit and pain hasonly partially responded then a second adjuvant may be addedin some cases. This usually means a reduction in the dose ofthe first. A common example of combining adjuvants isgabapentin, which at maximum tolerated dose can sometimesbe reduced to allow the addition of amitriptyline.Adjuvant analgesics*Drug Dose Indications Side effectsNSAIDs—for example, 50 mg oral every 8 hours (slow Bone metastases, soft tissue Gastric irritation and bleeding, fluiddiclofenac or COX 2 NSAID release 75 mg every 12 hours); infiltration, liver pain, retention, headache; caution in renal(evidence of GI side effects) 100 mg per rectum once a day inflammatory pain impairmentSteroids—for example, 8–16 mg a day; use in morning; Raised intracranial pressure, Gastric irritation if used together withdexamethasone titrate down to lowest dose that nerve compression, soft NSAID, fluid retention, confusion, controls pain tissue infiltration, Cushingoid appearance, candidiasis, liver pain hyperglycaemiaGabapentin 100–300 mg nightly (starting dose) Nerve pain of any cause Mild sedation, tremor, confusion (titrate to 600 mg every 8 hours; higher dose may be needed)Amitriptyline (evidence for 25 mg nightly (starting dose) Nerve pain of any cause Sedation, dizziness, confusion, dryall tricyclics) 10 mg nightly (in elderly mouth, constipation, urinary retention; patients) avoid in patients with cardiac diseaseCarbamazepine (evidence 100–200 mg nightly Nerve pain of any cause Vertigo, sedation, constipation, rashfor all anticonvulsants) (starting dose)*Drugs with a primary indication other than pain, but analgesic when used as above.Non-pharmacological techniquesThere are several non-pharmacological techniques for themanagement of neuropathic pain.Psychological techniquesPsychological techniques, such as cognitive behaviouraltherapies, include simple relaxation, hypnosis, and biofeedback.These methods focus on overt behaviour and underlyingcognitions and train the patient in coping strategies andbehavioural techniques. Though this is clearly of more use inchronic non-malignant pain rather than in patients with cancerpain, simple relaxation techniques should not be forgotten.Stimulation therapiesAcupuncture has been used successfully in eastern medicine forcenturies. There does seem to be a scientific basis foracupuncture, with release of endogenous analgesics within thespinal cord. Acupuncture is particularly useful for myofascialpain, which is a common secondary phenomenon in manycancer pain syndromes. Transcutaneous electrical nerve stimulation (TENS) may have asimilar mechanism of action to acupuncture. There is evidenceto support its use in both acute and chronic pain. Herbal medicine and homoeopathy are widely used for pain, butoften with little evidence for efficacy. Regulations on safety forthese treatments are limited compared with those for TENS for control of neuropathic pain that responds poorly to opioidsconventional drugs, and doctors should be wary ofunrecognised side effects that may result.Episodic painIn 2002 an EAPC working group suggested the term episodicpain to describe “any acute transient pain that is severe and hasan intensity that flares over baseline.” Episodic pain thusencompasses breakthrough pain and incident pain. 9
  • ABC of palliative careBreakthrough pain includes pain returning before the nextdose of opioid is due or acute exacerbations of pain occurringon the background of pain usually controlled by an opioidregimen. Incident pain is usually defined as that occurring dueto a voluntary action, such as movement or passing urine orstool. Pain due to bony metastases exacerbated by movement orweight bearing can be particularly problematic.Incident painPatients with bony metastases in the spine, pelvis, or femoramay have pain that escalates on movement, walking, standing,or even sitting. Opioid analgesics along with non-steroidal anti-inflammatory drugs are the mainstay of treatment, with the aimof making the patient comfortable at rest. Increasing the opioiddose further is often unhelpful as a dose sufficient to makemovement possible is too sedating when the resting patient’sopioid requirement is decreased. Rescue or breakthrough dosesof normal release opioid are usually used in anticipation of Radiographs showing lystic lesions in femur (left) and internal stabilisationmovement, along with non-drug measures such as radiotherapy, of bone (right)possible surgery, and appropriate aids and appliances. Bisphosphonates are interesting drugs established in theprevention of skeletal events due to metastases in most solidtumours. In some patients, analgesia can be achieved acutely,and trial evidence is emerging for good analgesia in pain dueto bone metastases.Interventional techniquesBefore interventional techniques are considered, it is importantto exclude untreated depression, general anxiety, and distress(though untreated pain may also lead to any or all of these). Chapter 2 discusses the role of trying a different opioid.The fundamental limiting factor in most patients withuncontrolled difficult pain is the inability to give higher dosesbecause of side effects. It is worthwhile remembering all thestrategies to “open the therapeutic window,” including using adifferent drug. Methadone deserves a special mention in this context. Ithas unusual properties, which we do not fully understand. It Computed tomogram of enlarged liver due to metastatic spread of cancerhas a different receptor binding profile from the pure (reproduced with permission from Times Mirror International Publishing)agonists and can be remarkably potent at small doses. It is not unusual to achieve markedly superior analgesia anda better side-effect profile with a switch to methadone. Inaddition, difficult elements of a pain—such as neuropathic orincident pain, or both—may become easier to control. Methadone equianalgesic conversion—seek specialist Starting or switching to methadone can be complicated in advicesome patients, and specialist advice should usually be sought. NB: the ratio depends on the dose of previous opioid G If morphine 30–90 mg (oral) use ratio of 4:1 (for instance, morphine 30 mg is approximately equivalent to 7 mg ofInvasive analgesic techniques methadone) G If morphine 90–300 mg (oral) use ratio of 8:1 (for instance,Despite appropriate use of analgesia and non-drug therapies, morphine 300 mg (oral) is approximately equivalent to 35 mgchemotherapy, and radiotherapy by multidisciplinary teams, a methadone (oral)) G If morphine 300 mg (oral) use ratio of 12:1 (for instance,considerable number of patients will still have uncontrolled morphine 400 mg (oral) is approximately equivalent to 35 mgpain or unacceptable side effects, or both. methadone (oral)) Such patients should be considered for some form of invasive G If previous morphine dose is much higher than 300 mg, the doseanalgesic technique as part of their overall management. This ratio will be higher than 12:1may range from a simple nerve block to more invasivetechniques such as regional or neurodestructive blocks. The choice of technique is influenced by:G Patient’s expectations—Adequate assessment of pain is the first step in management. Involvement of patients and relatives is important and aids decisions about treatmentG Prognosis and required duration of analgesia—Although often difficult to predict, prognosis will affect how appropriate any10
  • Difficult pain particular intervention may be. Further planned oncological Examples of invasive analgesic techniques treatment may require short term use of interventions for pain control Peripheral CentralG Pathology—The site and extent of disease will affect the Peripheral nerve block Non-destructive response to analgesics and direct which interventions have a G Intercostal G Epidural G Femoral G Intrathecal high chance of improving pain control. Plexus or nerve root G Sciatic involvement is common, as is incident painG Personnel—Early involvement of pain specialists in a Major nerve block Neurosurgical/destructive G Brachial plexus G Rhizotomy multidisciplinary setting is important for planning analgesic G Psoas G Cordotomy strategies. This can help to minimise the length of stay in G Paravertebral sensory nerve root G Intrathecal phenol hospital and reduce problems with severe uncontrolled pain. ablation Local availability of expertise and adequate training of staff G Coeliac plexus and relatives must be considered when technique is selected. A basic rule is that the technique with the least likelihoodof severe side effects should be chosen by using simpletechniques before progression to more complex strategies. In general, neurodestructive techniques should be reservedfor when other measures have failed or when life span isobviously limited. Vertebra Spinal cordSpinal routes of drug deliveryWith improvements in catheter and pump technology, use ofspinal lines is becoming more common in pain control. If thetechnique is carried out by appropriately trained personnel,complication rates are low, allowing flexible, long termanalgesia that can be used in an outpatient setting. Catheterscan be inserted either into the epidural space or into thesubarachnoid (intrathecal) space, where the cerebrospinal fluidis found. The line may be tunnelled subcutaneously to reduce Kidneyrisks of infection and movement of the catheter. The choice of Inferior vena cavatechnique depends on several factors. AortaDrugsAs the patients who need this technique tend to have complex Coeliac plexus nerve blockpain problems, multimodal analgesia has the best results. Acombination of low dose local anaesthetic, opioid, andclonidine is effective for most patients. Midazolam can beuseful as an additional agent, particularly if there are problemswith opioid tolerance. If ketamine is used then it should bepreservative-free to reduce problems with neurotoxicity. Theinitial conversion of opioid dose from oral or systemic opioid isvariable and depends on the opioid used and comorbidity ofthe individual patient. Long acting opioids should be stoppedbefore the line is inserted and the patient converted to shortacting agents. An approximate dose calculation fromsubcutaneous diamorphine is: Factors affecting choice of regional technique Epidural IntrathecalG Epidural: 1/10 of systemic dose ProceduralG Intrathecal: 1/10 of epidural dose G Simple procedure—local G Sedation or general anaesthesiaThus, if a patient was on 100 mg of subcutaneous diamorphine a anaesthetic with or without usually required sedation G Deep fixation at time ofday, the equivalent epidural dose would be 10 mg and the G Fixation can be difficult insertionequivalent intrathecal dose would be 1 mg per 24 hours. G Catheters not designed for G Silastic catheter designed for The initial solution used for epidural infusion is normally: long term use long term use G Drug spread may be limited, G Drug spreads within CSF, unlessG 9 ml 0.5% bupivacaine especially if there is tumour obstruction to flow; lipidG 75–150 g clonidine in the epidural space, or solubility determines degreeG Diamorphine according to individual patient. scarring related to of spread radiotherapy G Safety—catheter can only This gives a total volume of 10 ml infused over 24 hours. G Safety—catheter migration to migrate OUT of intrathecal Should there be a major problem with pump malfunction, intrathecal space delivering spaceand the whole syringe were accidentally given at once, this should potential overdosenot give a major life threatening overdose. Education and Prognosistraining of staff is important to minimise potential complications. Short term use: Longer term use: G Limited prognosis G Several different options—for G Other definitive treatment example, external or fullyThe future planned—for example, implantable radiotherapyAgents not currently widely available in the UK that may be G Trial for intrathecal linehelpful in managing patients with cancer pain include: 11
  • ABC of palliative careG Lidocaine patches—These are currently available in the US but Potential complications of spinal line not in the UK. They have a good side effect profile and studies have shown efficacy in neuropathic pain. We have also Complication Sign/symptom Action used them in our centre for bone pain, particularly vertebral CSF leak Severe headache Lie flat, encourage metastases, with some success. (postural) fluid intake (iv ifG Pregabalin—This agent is a 3-alkylated analogue of GABA ( - necessary); blood amino butyric acid), with a similar pharmacological profile to patch gabapentin, acting via the 2/ subunit on voltage gated Infection Local signs, pyrexia Avoid—aseptic technique for any calcium channels in the central nervous system. However, it dressing changes, has greater potency than gabapentin. Randomised controlled line changes etc; trials to date have shown efficacy against some forms of antibiotics neuropathic pain and an improved sleep pattern. Side effects Cord compression— Signs of cord Rare, may need seem similar to those seen with gabapentin. Titration of dose may be secondary to compression— surgical treatment is easier than with gabapentin. tumour, haematoma, sensory level,G N-methyl-d-aspartate (NMDA) subtype selective agents—Currently abscess weakness, may be available agents are non-selective. There is evidence from pain animal models that particular subtypes of the NMDA Catheter block or Acute increase in Replace catheter receptor may have potential for analgesia with reduced side fracture pain, may be leakage of infusion fluid effects and opioid sparing effects. These include agents Catheter Leakage of infusion Wrap in sterile saline acting at the glycine-B modulatory site or the NR2B subunit. disconnection fluid from soaked swabG Calcitonin gene-related peptide (CGRP) antagonists—CGRP is disconnection site immediately found in sensory neurones. Non-peptide analogues with a Replace syringe, line, favourable pharmacokinetic profile may have potential as and distal filter analgesics. Complications related to drugs Complication Sign/symptom Action Opioid withdrawal Agitation, insomnia, Increase opioid dose etc either via catheter or short acting oral doseFurther reading Opioid toxicity Hallucinations, Decrease dose, stopG Hanks GW, Conno F, Cherny N, Hanna M, Kalso E, Mc Quay HJ, sedation, twitching, opioids by other et al. Morphine and alternative opioids in cancer pain: the EAPC respiratory routes, use naloxone recommendations. Br J Cancer 2001;84:587–93. depression if clinically importantG Mercadante S, Radbruch L, Caraceni A, Cherny N, Kaasa S, respiratory Nauck F, et al. Steering Committee of the European Association depression for Palliative Care (EAPC) Research Network. Episodic Acute opioid Requiring rapid Add midazolam to (breakthrough) pain: consensus conference of an expert tolerance dose escalation infusion mixture, working group of the European Association for Palliative Care. despite stable situation switch to different Cancer 2002;94:832–9. with tumour opioidG Portenoy R, Forbes K, Lussier D, Hanks GW. Difficult pain problems: an integrated approach. In: Doyle D, Hanks GW, Pruritus— Itching—often nasal Naloxone (low dose), Cherny N, Calman K, eds. Oxford textbook of palliative medicine. 3rd uncommon with change or stop ed. Oxford: Oxford University Press, 2003:438–58. long term use opioidG World Health Organization. Cancer pain relief. Geneva: WHO, Urinary retention— Unable to pass urine Catheterise 1996. more common inG Zech DF, Grond S, Lynch J, Hertel D, Lehmann KA. Validation of men World Health Organization Guidelines for cancer pain relief: a Excess motor block Leg weakness Decrease local 10-year prospective study. Pain 1995;63:65–76. anaesthetic dose12
  • 4 Breathlessness, cough, and other respiratory problemsCarol Davis, Gillian PercyRespiratory problems are common in patients with advancedincurable disease. This article describes palliation in adults withmalignant disease, but the principles can be applied to manytypes of non-malignant disease. A detailed history, examination, and appropriateinvestigations are needed to establish the most likely cause of anysymptom. The degree of functional impairment should beassessed, as should the influence of factors that affect the severityof the symptom, including pre-existing diseases (for example,chronic obstructive pulmonary disease, COPD), exacerbatingfactors (for example, anaemia, ascites, or profound anxiety), andadditional factors (for example, pulmonary embolism, infection,or left ventricular failure). All influence management.BreathlessnessBreathlessness has non-physical as well as physical aspects and,like pain, can be defined by what a patient says it is. It is theunpleasant sensation of being unable to breathe easily. It is Radiograph of patient with malignant pericardial effusion and secondarycommon in the terminal stages of cancer: in one survey 70% of pleural effusion causing breathlessness1700 patients experienced breathlessness during their last sixweeks of life. It is a particularly distressing and frighteningsymptom, not only for patients but also for carers. Activity,levels of anxiety, speed of onset, and previous experience mayinfluence patients’ perception of breathlessness and its severity. While there is often an obvious cause (such as pleural General principles of managing breathlessnesseffusion or extrinsic bronchial compression), in some patients G Reassurance to patient, family, and non-professional andno cause is found despite thorough assessment. Little is known professional carersabout the effects of cachexia on respiratory muscle function; G Explanationhyperventilation may account for breathlessness in some cases. G Advice on techniques to conserve breathing, positioning G Stream of air such as fan or open windowManagement G Distraction and relaxation techniquesManagement of a breathless patient should be individualised, G Consider blood transfusion if patient is anaemicbut some general principles apply. Many members of an G Encourage adaptations in lifestyle and expectationsinterdisciplinary team can contribute. As well as nursing andmedical input, physiotherapy is often helpful, particularly foradvice on techniques for conserving breathing, positioning,control of panic, and relaxation methods. Occupationaltherapists can give essential advice on strategies and practicalaids for daily activities. There is good evidence to support Therapeutic options for specific situationsbreathlessness clinics led by nurses. In selected patients specific treatment, such as anticancer Pleural effusion G Pleural aspiration with or without pleurodesistherapy, can improve control of symptoms and quality of life. G Pleuroperitoneal shuntThe appropriateness of various strategies varies with time, but,for many patients, the disadvantages of travelling to a distant or Pericardial effusion G Aspiration, with or without percutaneous fenestrationregional centre may be justified when weighed againstsymptomatic relief gained from radiotherapy, laser therapy, or Lymphangitis G High dose corticosteroidsstenting of an endobronchial tumour. Pleurodesis should beconsidered early rather than after repeated pleural aspirations Endobronchial disease G High dose corticosteroidsas nearly all patients experience recurrence one month after G Laser therapysimple aspiration. G Cryotherapy G StentingOxygenOxygen is usually seen as a non-specific treatment forbreathlessness. Patients can become highly dependent onoxygen therapy; many see it as their lifeline. In patients withchronic lung and heart disease, however, there is goodevidence that oxygen therapy is beneficial only in specificsituations such as hypoxia or pulmonary hypertension. 13
  • ABC of palliative care It is not clear whether oxygen is better than air at relievingbreathlessness in patients with advanced cancer; furtherresearch is needed to identify which patients are most likely to Potential advantages and disadvantages of oxygen treatmentbenefit. Meanwhile, the pros and cons of oxygen therapy Advantages Disadvantagesshould be considered on an individual basis. Not all breathless G Reverse hypoxia G Claustrophobiapatients are hypoxaemic and, in any case, not all hypoxaemic G Sense of wellbeing G Discomfortpatients benefit from oxygen therapy. It seems sensible to G Patients, families, and G Drying effectprescribe a therapeutic trial of oxygen to patients with resting professionals feel they G Difficulties in communicationoxygen saturation concentrations 90%. At the least, some are doing something G Distancingform of objective assessment of the benefits, or not, of oxygen G Risk of patient/relatives smoking G Costin an individual patient should be performed; and oximetrymay be helpful. If relatively long term use is likely, an oxygenconcentrator rather than cylinders should be considered forpatients at home. The use of nasal speculae can avoid some ofthe inconvenience of a mask. The gas can be humidified, butthis is noisy. Few patients require continuous oxygen. For others, Breathlessnessexplanation and individualised coping strategies, including abedside or hand held fan, sometimes combined with non-specific drug measures, such as opioids or anxiolytics, are moreappropriate and often more successful. Fear of dying Panic Lack of understandingCoping with anxiety and panicThe vicious cycle in which anxiety aggravates breathlessness andbreathlessness, in turn, creates further anxiety is experienced tosome degree by most breathless patients, regardless of thecause. Some may experience a severe panic attack and become Increased anxietyconvinced that they are about to die. Such attacks are morecommon than is acknowledged. Patients should be advised of Cycle of increasing panic and breathlessnessmeasures that they can initiate to allow them to regain control.These have been summarised as “Stop, purse lips, drop(shoulders), and flop.” It is important to teach lay andprofessional carers how to cope; simple strategies such as gently Advice to patient about “panic attacks”massaging the breathless person’s back can be helpful. G Try to stay calm Research on the use of benzodiazepines in breathless G Purse your lipspatients with chronic non-malignant lung disease is equivocal G Relax shoulders, back, neck, and arms; let yourand, in patients with cancer, does not support their use in muscles breathe with you, not against you G Concentrate on breathing out slowly (if breathingunselected patients. If anxiety seems to be a major component in seems difficult)or trigger of breathlessness and cannot be relieved by non-pharmacological measures, then a therapeutic trial of a lowdose benzodiazepine either regularly or as required seemssensible. Concern about possible respiratory depression isusually unfounded, and any such concern should be weighedagainst the potential benefit of treatment.OpioidsThe relation between opioids and respiration is not simple; ifused inappropriately, opioids can induce respiratorydepression, which is determined by pathophysiology, previousexposure to opioids, rate and route of dose titration, andcoexisting pathology. However, low dose oral opioids canimprove breathlessness, sometimes dramatically, though theprecise mechanism of action is unknown. The dose of opioid can be titrated in the same way as whenit is used for pain control, but lower doses and smallerincrements should be used. In patients not previously exposedto opioids, as little as 2.5 mg of normal release morphine everyfour hours may be sufficient. If a patient is already receivingcontrolled release morphine, many convert to a normal releasepreparation and allow for a dose increment. For patientsunable to swallow, subcutaneous diamorphine can be used. The opium poppy, Papaver somniferum (photos.com)Concurrent laxatives should be prescribed.Nebulised drugsIf a trial of a nebulised drug is thought appropriate, thennebulised normal saline should be used in the first instance.14
  • Breathlessness, cough, and other respiratory problemsInhaled bronchodilators should be reserved for patients with Common causes of coughreversible airways obstruction. Trials of nebulised morphinehave been conducted in healthy volunteers and in patients with Non-malignantCOPD and malignant disease. Current evidence does not Acute infection Chronic infectionsupport its use. Other nebulised drugs should be regarded as G Upper respiratory viral G Cystic fibrosisexperimental in these patients. infection G Bronchiectasis G Bronchopneumonia G Postnasal drip Airway disease Recurrent aspiration G Asthma G Motor neurone diseaseCough G COPD G Multiple sclerosisCough is a normal but complex physiological mechanism, under Irritant Drug induced G Foreign body G Angiotensin converting enzymeboth voluntary and involuntary control, that protects the lungs G Cigarette smoke inhibitorsby removing mucus and foreign matter from the larynx, trachea, G Oesophageal reflux G Inhaled drugsand bronchi. Pathological cough is common in malignant and Cardiovascular causes Parenchymal diseasenon-malignant disease and can be classified in various ways. G Left ventricular failure G Interstitial fibrosesSeveral causes may coexist in one patient. Malignant disease may Malignantcause mechanical distortion of the airways causing dry cough Airway obstruction Vocal cord palsy(for example, by pulmonary effusion or endobronchial tumour) G Endobronchial disease G Hilar tumour or lymphadenopathyor accumulation of material within the airway causing a cough Pleural disease Interstitial diseaseproductive of blood, mucus, or purulent sputum. G Pleural effusion G Lymphangitis G Mesothelioma G Multiple pulmonary metastasesManagement G Radiation pneumoniaManagement should be determined by the type and cause ofthe cough as well as the patient’s general condition and likelyprognosis. When possible, the main aim should be to reverse orameliorate the cause, combined with appropriate symptomaticmeasures. Exacerbating factors should be defined and simple Classification of types of coughmeasures, such as a change in posture, particularly at night, can G Productive cough, patient able to cough effectivelybe helpful. Breathlessness can trigger cough, and vice versa. G Productive cough, patient not able to cough effectivelyPersistent cough can also precipitate vomiting, exhaustion, G Non-productive coughchest or abdominal pain, rib fracture, syncope, and insomnia. Cough suppressants are usually used to manage dry cough, Pharmacological agents that inhibit coughexcept in irritant nocturnal cough and cough in dying patients.The most effective antitussive agents are the opioids. Opioids Opioids and opioid derivatives Corticosteroids G Codeine phosphate G Prednisolonesuch as codeine or pholcodine are mild antitussives; morphine G Dextromethorphan G Dexamethasoneand comparable drugs have a more pronounced effect. Normal G Pholcodine (Often used to relieverelease morphine, administered as a tablet or solution, should G Methadone cough related tobe tried if regular administration of codeine or pholcodine is G Morphine endobronchial tumour,ineffective, starting at a dose of 5–10 mg either regularly every lymphangitis, or radiationfour hours or as needed. The dose can be titrated in the same pneumonia)way as for pain relief (see chapter 2). Methadone linctus can be Local anaesthetics Bronchodilatorsparticularly effective at night because it has a long half life, but Lozengesthe risk of accumulation exists. G Benzocaine G Salbutamol G Lignocaine G Ipratropium Mucolytic treatments such as simple linctus or nebulised salinemay benefit patients with a wet unproductive cough. Use of (For laryngeal, pharyngeal, or (Can relieve cough tracheal irritation) associated with reversiblenebulised saline can result in the production of copious liquid airways obstruction)sputum, and this makes it unsuitable for those who are unable Nebulisedto expectorate. G Lignocaine Nebulised local anaesthetics can relieve intractable, G Bupivacaineunproductive cough. Bronchospasm can occur, not necessarily (Useful for intractable, unproductiveonly with the first dose, and so nebulised bronchodilators cough, use with care)should be available, at least when treatment is initiated. Bothlignocaine (up to 5 ml of 2% solution every six hours) andbupivacaine (up to 5 ml of 0.25% solution every eight hours)have been used; relative efficacy and toxicity has not beenestablished. Treatment reduces the sensitivity of the gag reflexand causes a transitory hoarseness. Patients should not eat or Therapeutic options in managing productive coughdrink for an hour after nebulisation. Tenacious sputum Purulent sputum Antibiotics can be used to treat chest infection and to relieve G Steam inhalation G Antibioticspain, insomnia, or distress associated with a productive cough. G Nebulised saline G Postural drainageThere is anecdotal evidence that a single intravenous or large G Simple linctus G Physiotherapy G Physiotherapy G Cough suppressionoral dose of a broad spectrum antibiotic can reduce infected G Active cycle breathingsecretions, even in dying patients. The decision on whether to Loose secretions but unable to cough Heart failure G Positioningtreat an infection with antibiotics may raise ethical dilemmas G Diuretics G Anti-muscarinic drugsand needs careful consideration and discussion. Chest G Suctionphysiotherapy should be considered in all patients. 15
  • ABC of palliative care Antimuscarinics—In some patients it is more appropriate to Therapeutic options for haemoptysisreduce salivary secretion. Hyoscine hydrobromide orglycopyrronium bromide can be given as a subcutaneous Minor bleed Major bleedinjection or by subcutaneous infusion over 24 hours (see Caused by lung tumour Resuscitation appropriatechapter 11). G Oral haemostatic drug—such G Establish intravenous access as tranexamic acid G Transfusion G Radiotherapy—external beam G Bronchoscopy and or endobronchial endoscopic measuresHaemoptysis G Laser therapy G Bronchial artery embolisation G Open surgeryIn many studies of patients with haemoptysis, a definitive causeis established in only half. Even in patients with a proved Caused by pulmonary embolism Resuscitation inappropriate G Anticoagulation G Intravenous opioid andmalignancy, haemoptysis can be due to other causes. While Any cause benzodiazepinelung cancer is the commonest cause of massive haemoptysis G Treat coagulation disorder if( 200 ml/24 hours), non-malignant disorders such as acute presentbronchitis, bronchiectasis, and pulmonary embolism can cause G Cough suppressantmild to moderate haemoptysis. Both situations G Patient should be nursed lying on his or her side, on the side ofManagement the tumourIt is important to establish that the blood or blood stained G Mask evidence of bleed—such as with red or green towelsmaterial has come from the lungs or bronchial tubes and not G Calm witnesses—patient, family, staff, other patientsthe nose, upper respiratory tract, or gastrointestinal tract.Management depends on the volume of blood lost, the cause,and prognosis. Radiotherapy (endobronchial or externalbeam) and laser therapy are effective in controlling bleedingfrom an endobronchial tumour in over three quarters ofpatients. Massive haemoptysis should be regarded as an emergency,whether or not resuscitation is appropriate. Patients bleeding asa result of a non-malignant cause may warrant activemanagement, but this is rarely the case in those with advancedlung malignancy. Palliative management should be aimed atreducing awareness and fear. A combination of parenterallyadministered strong opioid and a benzodiazepine is usuallyrequired. The intravenous route should be used if there is Families need support after a death from massiveperipheral vascular shutdown. The patient’s family and staff will haemoptysis (photos.com)need support during and after a death from massivehaemoptysis. It is often possible to predict the likelihood of amassive bleed and plan for such a crisis in several ways,including establishing an emergency supply of appropriate Careful judgement is required indrugs in the patient’s home. deciding whether to discuss the risk of massive haemoptysis with a patient and relativesStridorA harsh inspiratory wheezing sound results from obstruction ofthe larynx or major airways. Treatment with corticosteroids(such as dexamethasone 16 mg daily) can provide rapid relief.Explanation should always be given, together with advice aboutsitting or lying as upright as possible and measures to relieveanxiety. Inhalation of a mixture of helium and oxygen (in aratio 4:1) is often helpful. Radiotherapy or endoscopicinsertion of a tracheal or bronchial stent should be consideredbut are not always appropriate.Pleural and chest wall painPleural and chest wall pain may exacerbate breathlessness andmay be difficult to manage. Non-pharmacological measuressuch as TENS or acupuncture may be helpful. Analgesics shouldbe prescribed in a stepwise fashion (see chapter 2). Coughsuppression may help. Radiotherapy should be considered if thepain is caused by metastases in the bones or soft tissues. Anintercostal nerve block may temporarily alleviate pain from rib Radiograph showing bilateral bronchial stents in patient with obstructivemetastases or fracture. Percutaneous cordotomy can be effective lesionfor the relief of chest wall pain such as that commonly caused bymesothelioma (see chapter 3, Difficult pain).16
  • 5 Oral health in patients with advanced diseaseJeremy Bagg, Andrew DaviesOral problems are common among patients in palliative care, Prevalence of oral problems in studiesparticularly those with advanced cancer. The aetiology of oral involving palliative care patients withproblems includes a direct effect of underlying disease; an cancerindirect effect of underlying disease; an effect of treatment forunderlying disease; an effect of a concomitant disease or Problem Prevalence (%)treatment for concomitant disease; or a combination of all of Oral symptomsthese. Dry mouth 58–78 Oral problems are an important cause of physical, Oral discomfort 33–55psychological, and social morbidity among these patients. Taste disturbance 26–44 Straightforward oral hygiene can prevent many problems, and Difficulty chewing 23–52relatively simple interventions can often resolve them. Successful Difficulty swallowing 23–37management, however, depends on adequate assessment—that is, Difficulty speaking 31–59providing “the right treatment for the right disease.” Halitosis 48 Patients seldom report oral symptoms or problems. Thus,healthcare professionals should always ask patients about oral Oral infectionssymptoms, and examine them for oral signs. Indeed, an oral Oral candidosis 8–83assessment is a mandatory part of the overall assessment of Dental caries 20–35these patients. Such an assessment needs to be repeated on a Periodontal disease 36regular basis as changes may occur within a relatively shortperiod of time.Oral hygieneThe importance of providing regular oral care cannot beoverstated. Oral hygiene measures should be performed at leasttwice a day, if they are to benefit the patient. The single most important measure is brushing the teeth. Asmall headed brush, with medium texture nylon filamentbristles, is recommended. Soft toothbrushes can be used forpatients whose mouths are particularly sore. Patients should beencouraged to use toothpaste containing at least 1000 ppmfluoride. For patients who have difficulty rinsing their mouthsor swallowing and are at increased risk of aspiration, a non-foaming alternative such as chlorhexidine gluconate gel shouldbe used. Water alone is acceptable for those who cannottolerate toothpaste. For very debilitated patients, chemical plaque control may This patient had a drug induced dry mouth, which resulted in poor oralbe helpful. The most effective antiplaque agent is hygiene, halitosis, and oral candidosis: the oral symptoms led to low mood,chlorhexidine, which should be used no more than twice daily. while the halitosis led to limited physical contact between the patient andChlorhexidine will not remove established plaque so the mouth her familyshould be thoroughly cleaned, ideally by a dentist or dentalhygienist, before regular use of chlorhexidine to maintain aplaque-free environment. Chlorhexidine is used mostcommonly as a 0.2% mouthwash (10 ml twice a day) but is alsoavailable as a 1% gel and a 0.2% spray.Denture hygieneDentures are readily colonised by microorganisms so it isessential that a high level of denture hygiene is maintained.Denture care must be carried out at least once a day, preferablyat night. All dentures, both partial and complete, must becleaned outside the mouth and the soft tissues of the mouthand standing teeth cleaned separately. Dentures should alwaysbe cleaned over a bowl of water, so that if dropped they will notbe damaged. Commercial products are available for cleaningdentures, but household soap, or just water alone, is satisfactory. The same patient as above. Her mouth dramatically improved when she wasOrdinary toothpaste should not be used because it is too treated with a saliva stimulantabrasive. The denture should be rinsed well before re-insertion. 17
  • ABC of palliative care Dentures should be left out of the mouth at night. Plasticdentures should be soaked overnight in a dilute solution ofsodium hypochlorite (such one part 1% Milton to 80 partswater). This allows disinfection of the denture and reduces thelikelihood of denture stomatitis (see below). The dentureshould be rinsed well under running water before beingreturned to the patient’s mouth. Dentures with metal partsshould be soaked in chlorhexidine gluconate (0.2% solution)to achieve disinfection. Dentures should be stored in a denturecontainer clearly marked with the patient’s name. Denturesthemselves can also be marked with the patient’s name.Oral symptomsDry mouth (xerostomia)Xerostomia may be caused by a reduction in the secretion ofsaliva, a change in the composition of saliva, or a combinationof these factors. Dentures in Milton Xerostomia is associated with several other oral symptomsand problems, including oral discomfort, disturbance in taste,difficulty chewing, difficulty swallowing, difficulty speaking,difficulty in retaining dentures, dental caries, oral candidosis, Some causes of dry mouthand other oral infections. The various manifestations of G Drug treatment (most common cause)xerostomia reflect the multiple functions of saliva. Many drugs used in palliative care (for example, The management of xerostomia involves treatment of the analgesics and antiemetics)underlying cause and use of saliva stimulants or use of saliva G Local tumour G Local surgerysubstitutes. The choice of symptomatic treatment will depend G Local radiotherapyon several factors, including the aetiology of the xerostomia, G Dehydrationthe patient’s general condition, the presence or absence ofteeth, and, most importantly, the patient’s preference. There are good theoretical reasons for prescribing salivastimulants rather than saliva substitutes. Furthermore, in thestudies that have compared both, patients have generallypreferred the saliva stimulants. The management of dry mouthalso involves oral hygiene measures and the use of fluoride Management of dry mouthsupplements. Treat the underlying cause Acidic products are relatively contraindicated in dentatepatients and should be used with caution in edentulous Saliva substitutes G Waterpatients. A low pH predisposes to dental erosion, dental caries, G Artificial saliva—for example, mucin based, CMC* basedand oral candidosis. It should be noted that some of the G Other agentsartificial salivas are acidic in nature. Saliva stimulants G Chewing gumOral discomfort and pain G Organic acids—for example, malic acid, citric acidA dry mouth, poorly fitting dentures, intraoral diseases G Parasympathomimetic drugs—for example, pilocarpine(malignant, infectious), local radiotherapy, and systemic hydrochloride, bethanechol chloridechemotherapy can all cause oral discomfort in patients in G Other agents G Acupuncturepalliative care. The strategies used to manage oral discomfortinclude treatment of the underlying cause, topical analgesics *Carboxymethylcellulose(local anaesthetics, other agents), and systemic agents.Taste disturbanceSimilarly, there are several potential causes of taste disturbance,including dry mouth, intraoral diseases (malignant, infectious),local surgery, local radiotherapy, systemic chemotherapy, drugtreatment, and zinc deficiency. Management of taste disturbanceHalitosis Treat the underlying causeHalitosis may be “physiological” (no underlying disease Dietary interventions G Use foods that taste “good”present) or “pathological” (underlying disease present). G Avoid foods that taste “bad”Physiological halitosis results from the bacterial putrefaction of G Enhance the taste of the food (use salt, sugar, and otherfood, epithelial cells, blood cells, and saliva; the process occurs flavourings)mainly on the dorsal surface of the tongue. This is the most G Focus on the presentation, smell, consistency, and temperaturecommon type of halitosis. Pathological halitosis usually results of the foodfrom disease of the oral cavity but may also be associated with Zinc supplementsdisease of the respiratory or gastrointestinal tract or a systemicmetabolic problem. There are several strategies for the18
  • Oral health in patients with advanced diseasemanagement of physiological halitosis; the management ofpathological halitosis involves treatment of the underlyingdisease.Management strategies for physiological halitosisMechanical measures to reduce bacterial numbers/nutrientsG Teeth cleaningG Use of interdental aids (dental floss, dental sticks)G Tongue cleaning (toothbrush, tongue scraper)G Periodontal treatment (scaling, root planing)Chemical measures to reduce bacterial numbers/nutrientsG Chlorhexidine (in mouthwash) Pseudomembranous candidosis (“oral thrush”)G Other antimicrobial agents—for example, baking soda, (courtesy of Prof David Wray) cetylperidinium, essential oils, hydrogen peroxide, triclosan (in various vehicles*)Chemical measures to counteract odourG Zinc salts (in mouthwashes, toothpastes, or chewing gum)G Other agents—for example, baking soda, chlorine dioxide (in various vehicles*)Dietary modificationSmoking cessationMasking agentsG For example, mints, cosmetic sprays/mouthwashesNatural productsFor example, black tea, various herbs*Mouthwashes, toothpastes, chewing gum Erythematous candidosis (courtesy of Prof David Wray)Oral infectionsFungal infections (oral candidosis)Oral candidosis is the most common oral infection in palliativecare. The predisposing factors include dry mouth, dentures,and immunosuppression. Candida albicans is responsible formost oral fungal infections, but other species such as C glabrata,C dubliniensis, and C tropicalis are also important. Oral candidosis may present in several different clinicalforms, including pseudomembranous, erythematous, denturestomatitis, and angular cheilitis. Oral candidosis may spreadlocally to cause oesophageal candidosis or more widely to causesystemic candidosis. The management of oral candidosis involves treatment ofany predisposing factors (such as disinfection of dentures),together with treatment of the infection with topical or systemicantifungal drugs. Topical treatments for oral candidosis include Angular cheilitis (courtesy of Prof David Wray)nystatin, amphotericin B, and miconazole. Topical treatmentscan be effective, although this depends on correct use. Manypalliative care patients find it difficult to comply with therecommended treatment regimens. Systemic treatments for oral candidosis include fluconazole,itraconazole, and ketoconazole. Systemic treatments tend to beeffective and are particularly useful in widespread disease. Thedrawbacks of these drugs are their contraindications, druginteractions, and the emergence of antifungal drug resistance.Resistance to the azole group of drugs seems to be a growingproblem in palliative care, though for most patients in thissetting they are generally still effective.Bacterial infectionsDental caries and periodontal disease are both common amongpatients in palliative care. Established disease requires specificinterventions from the dental team. Oral hygiene measures willhelp to prevent progression of disease (see above). Other Denture stomatitis (courtesy of Prof David Wray)bacterial infections are relatively uncommon. 19
  • ABC of palliative careViral infectionsInfection with herpes simplex virus (HSV) is relativelycommon. Most infections are secondary (reactivation)infections. Patients may develop the classic herpes labialis(“cold sore”) or, if immunosuppressed, they may develop anatypical picture of oral ulceration/inflammation. The lesionsare usually painful, and patients have problems drinking andeating. The treatment involves antiviral treatment (such asaciclovir), together with supportive therapy (such asanalgesics).Dental and denture problemsInvolvement of the dental surgeon and other members of thedental team is essential to the management of these problems. Problems with dentures are common in patients withadvanced disease. The underlying cause is usually poor fitting, Reactivation of herpes simplex virus infection in immunosuppressed patientwhich leads to difficulty in eating or speaking and possibly oral (courtesy of Dr Petrina Sweeney)ulceration. The management of denture problems depends onthe physical condition of the patient: fit patients can have theirdentures replaced with a copying technique, while less fitpatients can have their dentures adjusted or relined. The lattertechnique can be undertaken at home. Dental problems are less common because of the highlevels of denture wearing within the normal population. Manydental techniques can also be undertaken in the home.Oral problems in patients withadvanced non-malignant disease Further readingOral problems are common in all groups of patients with G Davies A, Finlay I. Oral care in advanced disease. Oxford: Oxfordadvanced disease. Many of these problems are generic in University Press, 2004.nature (see above), but some are more specific to the G Laskaris G. Colour atlas of oral diseases. 2nd ed. Stuttgart: Georgindividual groups of patients. For example, patients with HIV Thieme Verlag, 1994. G Bagg J, MacFarlane TW, Poxton IR, Miller CH, Smith AJ.and AIDS may develop various infectious and malignant Essentials of microbiology for dental students. Oxford: Oxfordproblems, including hairy leukoplakia, periodontal disease University Press, 1999.related to HIV, and Kaposi’s sarcoma.20
  • 6 Anorexia, cachexia, nutrition, and fatigueKenneth Fearon, Matthew BarberWhat is cachexia? Negative energy balanceCachexia, anorexia, and fatigue are an overlapping and oftenneglected group of symptoms that at some stage affect mostpatients with cancer. Similar symptoms may be seen in other Outputconditions, including advanced cardiac failure, COPD, renal Hypermetabolismfailure, and AIDS and in patients who have been in intensive Input APPRcare units. The term cachexia is derived from the Greek words Anorexiakakos and hexis meaning poor condition. Cachexia is a broad Malabsorptionheterogeneous syndrome. The key feature is wasting thatcannot be easily or completely reversed by an increase in food Cachexia is multifactorial, and it effects a patient’s balance of negativeintake alone. Anorexia or reduced appetite often accompanies energy (APPR acute phase protein response)cachexia. Some patients with anorexia, however, do not havecachexia. Equally some cachectic patients become wasted butapparently do not have anorexia. Fatigue is a common elementbut again this can occur in isolation. Cachexia is complex and multifactorial. A patient’s evidentchronic negative energy and protein balance is most commonlydriven by a combination of reduced food intake and metabolic Initiating factors Compensatory changeschange. Symptoms can include anorexia, early satiety, tastechanges, loss of physical function, and fatigue. Signs may Normal Mild Moderate Severe Death cachexia cachexia cachexiainclude muscle wasting, loss of subcutaneous fat, andperipheral oedema. Different symptoms may predominate inindividual patients and may also change with time. Advanced Weight Below ideal Muscle Reducedcachexia is generally easy to recognise, but the early symptoms loss body weight wasting survival obviousmay be more subtle. An unintentional loss of weight of morethan 10% with an appropriate underlying diagnosis has The progression through cachexiatraditionally been used as a definition of cachexia. Thisdefinition, however, neglects other relevant symptoms and ifused rigidly is likely to delay diagnosis and therefore treatment.Equally, with an ever increasing tendency towards obesity in thegeneral population, lesser degrees of weight loss are likely toidentify a proportion of patients who, while at risk ofdeveloping cachexia, may still be above ideal body weight. Diagnosis of cachexiaWhy is cachexia important? Early G 5% weight lossAnorexia and fatigue are consistently among the most common Latesymptoms reported by patients with advanced cancer. Cachexia G 15% weight loss (BMI 18; albumin 30 g/l)affects over 80% of such patients or patients with AIDS beforedeath. It is particularly common in those with solid tumours ofthe upper gastrointestinal tract and lung. Those with cachexiahave reduced survival, often experience anorexia and fatigue,have an altered body image, and have impaired physical activity Patients with weight loss (in previous 6 months) (%)and overall quality of life. Response to antineoplastic therapy is 100reduced and morbidity caused by treatment increased. >10% 5-10% 0-5% 80Cachexia is usually progressive and is sometimes fatal. 60Does this patient have cachexia? 40A history and physical examination are probably the most usefultools in making the diagnosis and assessing response to therapy. 20Weight loss in the past six months should be recorded.Symptoms associated with reduced food intake (for example, 0loss of appetite, early satiety, nausea or vomiting, and alterations n te ll ll as c c ce ce tri tri lo ta re Co as as os all all ncin taste or smell) are key warning signals. Weight should be eg eg Pr sm sm Pa bl bl n- ngmeasured and recorded along with height. Oedema and ascites ra ra no su su Lu ng ea eaare common and should be documented because fluid m M Lu n- Noretention may mask the severity of underlying weight loss. Bodymass index (weight (kg)/height (m)2) should be calculated. A Nutritional status of patients with cancer: prevalence and severity of weightBMI 18 indicates severe undernutrition. The plasma albumin loss 21
  • ABC of palliative careconcentration may be low and, if it is accompanied by a raisedC reactive protein (CRP) or erythrocyte sedimentation rate Cytokines Anorexia(ESR), probably reflects an underlying systemic inflammatory Neuroendocrine hormones metabolic Wastingresponse that may contribute to the weight loss. change Tumour-specific factorsWhy do patients become cachectic? Mediators of cachexiaThe cachectic patient is like an accelerating car running out ofpetrol. Anorexia critically reduces fuel supply (by about300–500 kcal (1254–2090 kJ) a day), while acceleratedmetabolic cycling (for example, glucose-lactate cycling) driveshypermetabolism (100–200 kcal a day). In addition, there aredirect catabolic effects at the level of skeletal muscle (forexample, activation of the ubiquitin-proteasome pathway) andadipose tissue. The mediators of these changes are complexand include proinflammatory cytokines, stress hormones, andtumour specific cachectic factors such as proteolysis inducingfactor (PIF). The main energy (subcutaneous fat) and labileprotein reserves (skeletal muscle) of the body are mobilisedand the patient becomes prone to secondary effects such asinsulin resistance and further muscle wasting due to immobility.These changes underlie a key paradox of cachexia in that while Sedentary work 1.5the metabolic rate may be increased, overall (or total) energy Out of bedexpenditure is decreased due to a fall in physical activity. Not alive 1.2 PALManagement 1.0Once a patient has become severely wasted and bed bound andis within weeks of dying it is unlikely that intervention can have n=24any objective benefit. The longstanding practice of giving such 0.5patients steroids to improve mood and perhaps appetiteremains a keystone of clinical practice. Physical activity level (PAL) in patients with cachexia (adapted from Moses At the other extreme of intervention is the patient with et al, Br J Cancer 2004;90:996–1002)incurable cancer, who has a prognosis measured in months, butwho has malnutrition related to gut failure because of localisedand relatively stable intra-abdominal malignancy. A proportionof these patients benefit from total parenteral nutrition athome. Although not often used in the UK, such intervention, ifguided by expert clinical judgment, can result in improvedquality and quantity of life. Other groups who may benefit fromartificial nutritional support but via the enteral route includepatients with slowly advancing head and neck tumours.Therapeutic principles of managementFor most patients the management of cachexia requires insightand enthusiasm from the physician, surgeon, generalpractitioner, nurse specialist, and dietician with whom the Focus of treatment in cachexiapatient may come into contact. Cachexia is a chronic problem G Multidisciplinaryfor which there is no quick fix and which requires repeated re- G Start early rather than lateevaluation as the clinical condition of the patient changes. G Target reduced food intake and metabolic stress G Aim to improve physical activity/quality of lifeOnce signs of cachexia are evident patients generally have two G Nutritional status is not an end in itselfto six months to live. Early recognition and prophylacticmeasures are better than trying to reverse an advancedsituation. Good clinical judgment is paramount to identify allreversible factors that may be contributing to the patient’swasting syndrome. In particular, if nausea and vomiting can becontrolled with regular antiemetics (or surgery if there is a Therapeutic principlesdefined mechanical obstruction), malabsorption treated with G Exclude/treat obstruction, infections,enzyme supplements, constipation treated with laxatives, pain malabsorption, drug related problemswell controlled with the minimum of sedation, and depression G Optimise pain control, encourage exercisetreated with antidepressants then this sets the background for G Optimise nutritional intake—varied, attractiveoptimal appetite and function of the gastrointestinal tract. food offered at appropriate times in appropriate quantitiesFood intake G Consider specific anticachectic therapyWith the recognition that weight loss in patients with cancer ismost commonly due to a combination of reduced food intake22
  • Anorexia, cachexia, nutrition, and fatigueand metabolic change, once the overall management of thecachectic patient has been optimised, therapeutic strategiesshould try to address both these issues. Intake of food can be improved by providing small andfrequent meals that are dense in energy and easy to eat (forexample, dairy products, ice cream). Patients should eat inpleasant surroundings, and attention should be given to thepresentation of food. If, however, patients are unable to finishmeals, relatives should be counselled to avoid conflict over theissue. Formal dietary assessment and advice may be soughtfrom a dietician. Provision of energy and protein dense oral sipfeeds (1.5 kcal/ml) can often be useful. Care has to be takenthat these do not replace normal food. Asking the patient totake a fixed dose at regular times (as with a prescriptionmedication) is one way of optimising compliance. Patientsshould aim to take 200–400 ml daily (that is, 300–600 kcal),accepting that this will suppress some normal food intake butprovide a net gain of 200–400 kcal a day. When a patient complains of severe anorexia or early satietyit may be necessary to provide an appetite stimulant. Moderatealcohol consumption before and during a meal may help.Prednisolone (5 mg three times a day) or dexamethasone(4 mg a day) can improve appetite and mood but are notgenerally suitable for long term use (that is, more than six toeight weeks) due to loss of efficacy and side effects includingmuscle wasting. Progestogens (for example, megestrol acetate480 mg a day or medroxyprogesterone acetate 1000 mg a day)can improve appetite in about 70% of patients and can alsoresult in increased food intake and weight gain in a smallerproportion (about 20%) of patients. Such effects may in partbe due to corticosteroid-like activity: improved wellbeing andreduced fatigue have been reported in trials with progestationalagents. Sometimes early satiety will respond at least temporarily The size and appearance of meals may be as important as their nutritionalto the use of prokinetic agents (such as metoclopramide). value. Standard hospital meals (top) are generally unsuitable and should be The metabolic management of patients should focus on replaced by smaller, more attractive helpings (bottom)down regulating the systemic inflammatory response tomalignancy. Non-steroidal anti-inflammatory agents (such asibuprofen 400 mg a day) along with peptic ulcer prophylaxis(such as omeprazole) can be used as long term treatment andhave been combined successfully with progestational agents (ascombination therapy to address reduced food intake).Eicosapentaenoic acid (EPA) is a natural component of fish oiland is known to down regulate proinflammatory cytokines andblock the effects of tumour specific cachectic factors (forexample, PIF). EPA (2 g a day) can be provided either as fishoil capsules or as a combination therapy by being incorporatedin a high protein, high calorie oral sip feed (such as ProSuretwo cartons a day). This combination has been shown not onlyto arrest nutritional decline but also to improve patients’physical activity level. Drugs with a direct anabolic effect have been suggested forthe treatment of cachexia, and anabolic steroids have beenshown to improve patients’ weight without any apparentadverse effect. Tumours are well known to express growthfactor receptors, and anabolic agents such as growth hormoneare not used clinically because of anxieties about stimulatingtumour growth. Management of cachexia as outlined above may improve Patient with cachexiafatigue. If fatigue proves problematic or arises as a symptom inassociation with anaemia, recombinant erythropoietin may beof benefit. Recent evidence, however, has raised the issue ofstimulation of tumour growth with erythropoietin in patientswith head and neck cancer and this requires further evaluation.Fatigue may also be improved by anti-inflammatory strategiessuch as steroids or non-steroidal drugs. Finally, it is importantto recognise that although some patients with cachexia can be 23
  • ABC of palliative careimproved, often the goals of intervention are to stabilise the Patients should be encouraged to keepsituation or attenuate decline. Patients with limited energy active to prevent secondary musclereserves and capacity for physical activity, however, should be wasting as a result of immobilisationcounselled to make most efficient use of the energy they have(with a focus on meal times and social interaction). Advicefrom occupational therapists and the provision of physical aidsin the home may greatly enhance quality of life.What can be expected from treatmentof cachexia?Cachexia is a multifactorial syndrome, the precise aetiology ofwhich can vary from patient to patient. Thus it would beunreasonable to expect any single therapy to be effective in allpatients. Improved nutritional status might increase physicalfunction and thus quality of life and perhaps survival. Somepatients might respond to combination therapy with weightstabilisation and resulting stable or improved physical functionor quality of life. Further reading G Barber MD. The pathophysiology and treatment of cancerThe future cachexia. Nutr Clin Pract 2002;17:203–9. G Gordon JN, Green SR, Goggin PM. Cancer cachexia. Q J MedCombination therapy within the context of integrated care 2005;98:779–88.pathways promises better management of cachexia. At present, G MacDonald N, Easson AM, Mazurak VC, Dunn GP, Baracos VE.clinical trials are hampered by heterogeneity of patients, Understanding and managing cancer cachexia. J Am Coll Surgdifficulty with defining end points, mild to moderate activity of 2003;197:143–61.combination regimens, loss of patients, and cost. Greater G Muscaritoli M, Bossola M, Aversa Z, Bellantone R, Rossi Fanelli F.understanding of the complex pathophysiology of both Prevention and treatment of cancer cachexia: new insights intocachexia and anorexia will hopefully provide new targets for an old problem. Eur J Cancer 2006;42:31–41. G Tisdale MJ. Molecular pathways leading to cancer cachexia.drugs, which, in combination with better trial design, should Physiology 2005;20:340–8.lead to future progress.24
  • 7 Nausea and vomitingKathryn MannixNausea and vomiting are related but separate symptoms;nausea is a sensation of the desire to vomit, which causes Chemicals: Higher centres: DA receptors • Drugsmisery and withdrawal; vomiting is the action of expelling • Pain • Haloperidol • Uraemiagastrointestinal contents via the mouth and is usually an • Fear, etc 5HT3 receptors • Hypercalcaemia, etcinvoluntary reflex. Retching is a rhythmic contraction of the • "-setrons"diaphragm, abdominal wall, and intercostal muscles, which CTZpropels vomit towards the mouth. His1 receptors These are common symptoms in patients in palliative care, • Cyclizine Achm receptorsaffecting up to 70% of people with advanced cancer and • Hyoscine hydrobromide VIIIcausing distress to considerable numbers of people with AIDS, 5HT2 receptorsheart failure, renal failure, and other life limiting conditions. • Levomepromazine The symptom complex of nausea and vomiting is part of a VCbrain stem reflex that has evolved to protect us from ingestedpoisons. Various triggers can stimulate nausea, and relief of Autonomic afferents Brainstem centresnausea therefore requires identification of the trigger andtreatment to remove the cause or to block central stimulation Viscera: Vomiting reflexof receptors in the brain stem. • ENT • Pleura • PeritoneumManaging nausea and vomiting • Meninges, etc Upper GI motility changes DA receptors 5HT4 receptors Key: • MetoclopramideAdequate relief of these symptoms requires systematic • Domperidone CTZ = Chemoreceptor trigger zoneassessment of the patient to diagnose the most likely cause(s). 5HT3 receptors VC = Vomiting centreIf the cause can be reversed—for example, with surgery to • "-setrons"reverse gastrointestinal obstruction or measures to correct Receptors:hypercalcaemia—then an antiemetic may be required only DA = Dopaminetemporarily. In palliative care, however, the cause is often 5HT2,3,4 = Serotonin types 2, 3 and 4 His1 = Histamine type 1irreversible and a long term antiemetic strategy is required. Achm = Muscarine cholinergic Prescribing antiemetic drugs is only part of such a strategy.Attention to the patient’s understanding of the meaning of the Triggers to nausea and vomiting: pathways, receptors, and recommendedsymptoms, dealing with anxiety (which can cause or exacerbate antiemeticsnausea), and helping the patient to have realistic expectationsabout symptom management are important components of thestrategy. Complementary therapies may have a role—for Drugs of use in the palliation of nausea and vomitinginstance, there is good evidence for the efficacy of acupuncture Antiemeticsin the management of nausea. G Acting at CTZ: haloperidol, metoclopramide, levomepromazine G Acting at vomiting centre: cyclizine, hyoscine hydrobromide, levomepromazineAntiemetics and other useful drugs G Acting on 5HT receptors (for nausea and vomiting induced only 3Pharmacological management of nausea and vomiting includes by chemotherapy, radiotherapy, or surgery): ondansetron, granisetron, tropisetronthe use of drugs to block the emetogenic reflex in the brainstem (antiemetics), drugs to promote peristalsis in the upper Antisecretory agents Prokinetic agents G Hyoscine hydrobromide G Metoclopramidegastrointestinal tract (prokinetic agents), drugs to reduce the G Hyoscine butylbromide G Domperidonevolume of gastrointestinal secretions (antisecretory agents), G Octreotide G Cisapride*and adjuvant drugs—for example, corticosteroids. Vestibular sedatives G CinnarizineChoosing an antiemetic G DimenhydrinateAntiemetic drugs work by binding to specific receptor sites in Adjuvant drugsthe chemoreceptor trigger zone (CTZ) or vomiting centre G H antagonists—for example, ranitidine, cimetidine 2(VC) in the brain stem. At each site there are several receptors; G Proton pump inhibitors—for example, omeprazole, lansoprazolethe more strongly the drug binds to its receptor, the more G Prostaglandin analogues—for example, misoprostolpotent its antiemetic activity. G Corticosteroids G Cannabinoids: nabilone The most potent antiemetic at the CTZ is the dopamineantagonist haloperidol. At the VC, the non-sedating *Cardiotoxic: cisapride must be ordered on a named patient basis inantihistamine cyclizine and the antimuscarinic hyoscine the UKhydrobromide have similar efficacy, but the side effects ofcentrally acting antimuscarinics reduce their usefulness andmakes cyclizine the drug of choice. Levomepromazine is a phenothiazine with affinity for There is no antiemetic role for 5HT3 antagonists, apartreceptors at both the CTZ and the VC. Although its binding from their use in emesis induced by chemotherapy andaffinity is lower than cyclizine or haloperidol for the same possibly emesis after surgeryreceptors, it may be a useful broad spectrum antiemetic. It must 25
  • ABC of palliative carebe used in low doses to avoid sedation and hypotension. Gastric emptying is reduced in the presence of nausea. Metoclopramide has a lower affinity for CTZ dopamine Don’t assume that oral drugs will work, even if there isreceptors than haloperidol and so is less effective as an no vomitingantiemetic. It has prokinetic activity because of its action onreceptors in the gastrointestinal tract, and this is its major usein palliative care.Steps to good management of symptomsG Thorough assessment: history, examination, biochemistry, imaging, microbiology, and other investigations may all be required to establish a probable cause for nausea and/or vomitingG Having identified a probable cause, determine what Steps to good management neurotransmitter receptors are likely to be involved G Carry out a thorough assessmentG Choose an antiemetic that is a specific antagonist to that G Determine which neurotransmitter receptors are involved neuroreceptor G Choose an antiemetic for the specificG Give this antiemetic by a route that will ensure it will reach its neuroreceptor target: in practical terms, this means avoiding the oral route G Choose the relevant route of administration (even in the absence of vomiting) until nausea has been G Reassess to identify any additional triggers settled for at least 24 hours G Decide whether any of triggers can be reversedG Reassess. If nausea persists, there may be an additional G Plan how to maintain control trigger that has not been identified. Continue the first antiemetic while reassessing and introducing a second antiemetic acting at a different site in the brain stemG Decide whether any of the triggers can be reversed. This depends both on the trigger and the patient’s performance status or preference about other treatment options—for example, surgery, radiotherapy, dialysisG Once nausea is controlled, plan how control will be maintained—for example, oral antiemetics, syringe driver, acupuncture, etc.Non-drug approaches to palliationPsychological techniques—Studies in people undergoingchemotherapy have shown that patients can learn progressivemuscle relaxation and use mental imagery to increase theirrelaxation and reduce their nausea. Cognitive therapy has alsobeen used to help to reduce the emotional distress arising from The P6 acupuncture site is located on the anterior aspect of the wrist in the midline,physical symptoms in advanced cancer. Hypnotherapy can help about 3cm from the palmar creaseto reduce the sensation of nausea and the perceived durationof nausea. Acupuncture and acupressure have both been shown to augmentthe effects of antiemetic drugs during chemotherapy and toreduce postoperative nausea and vomiting. Transcutaneouselectrical nerve stimulation (TENS) can be used as an alternativeto traditional acupuncture needles at the P6 acupuncture point,and this is more practical for patients to use themselves.Management of specific nausea andvomiting syndromes Common chemical causes of nausea andGastric stasis vomitingReduction in gastric emptying may be caused by opioids,mucosal inflammation (NSAIDs, stress, tumour), G Opioids (30% of patients at introduction of opioids)anticholinergic drugs (including side effects of tricyclic G Hypercalcaemiaantidepressants and antipsychotics), raised intra-abdominal G Uraemia (urinary tract obstruction, renal failure,pressure (ascites, hepatomegaly), or occasionally by heart failure)encroachment of tumour on the gastric outlet (such as G Chemotherapygastroduodenal tumours, mass in head of pancreas). Autonomic failure may be a feature of end stage cancer,Parkinson’s disease, diabetes, and AIDS and can allow poolingof gastric secretions in a patulous stomach, with regurgitationand posseting.26
  • Nausea and vomitingAssessmentThere is little nausea because the stomach is designed to stretch.Large volume vomits are characteristic; as the stomach distendsthe patient may experience acid reflux through the distendedcardia, hiccups triggered by diaphragmatic irritation, a feelingof bloating, and early satiation after taking small amounts offood or drink. Vomiting usually relieves these symptoms, and thevomit may contain undigested food eaten many hours earlier.ManagementAnticholinergic drugs must be discontinued if at all possible.Prokinetic drugs may restore gastric emptying if the lumen ispatent and the autonomic nerves are intact, but they may causecolic if there is an upper gastrointestinal obstruction. In normalcircumstances, using a proton pump inhibitor or H2 blockercan reduce the volume of gastric secretions, and parenteraladministration can help some patients with obstruction.Ingested air can be de-foamed with dimethicone (tablets orcompounded with an antacid). Occasionally a tube may be necessary to decompress the Gastrostomy tube feeding. Reproduced with permission from Dr P Marazzi/stomach: a venting PEG (percutaneous endoscopic Science Photo Librarygastrostomy) tube may be more acceptable than a nasogastrictube. A dual lumen PEG, with a jejunal extension, may be usedto aspirate from the stomach and to deliver enteral fluids to the Palliation of symptoms of intestinal obstructionjejunum, preventing dehydration. Drug/dose Actions CommentsGastrointestinal obstruction Cyclizine 150 mg/24 Acts on vomiting Nausea isMalignant obstruction of the gastrointestinal tract may be due hours sc infusion may centre controllable butto occlusion of the lumen by tumour or distortion of gut and require addition of vomiting will haloperidol 1.5–3 mg persist in totalmesentery by tumour, or may be functional due to a failure of sc once a day obstructionnormal peristalsis. Obstruction may be partial or complete and Haloperidol 1.5–3 mg Acts on CTZmay develop gradually with self resolving episodes of partial sc once a dayobstruction preceding a complete obstruction. The treatment Hyoscine Reduces motility Both drugs reduceof choice for a single level of occlusion is surgery, but when the butylbromide 60–200 and secretions distension reducingpatient is unfit for surgery, or when there are multiple levels of mg/24 hours nausea and colicobstruction, an alternative treatment regimen is necessary to Octreotide 300–1200 Reduces secretionspalliate symptoms of nausea, vomiting, colic, abdominal g/24 hoursdistension, and peritoneal pain. Levomepromazine Acts on VC and CTZ, Sedating at higher The amount of vomiting depends on the level of 6.25–25 mg/24 hours useful second line dosesobstruction, with more proximal upper gastrointestinal antiemeticobstruction causing larger volume vomiting. If the level ofobstruction is beyond the mid-jejunum, the mucosa of theupper gastrointestinal tract can continue to absorb fluids fromthe lumen. This reduces the volume of intestinal contents and,in turn, reduces the gut distension that triggers nausea andcolic. Thus, vomiting is less frequent and of smaller volumeswith more distal obstruction. Nausea is triggered by distension of the bowel lumen,stimulating the vomiting centre via autonomic afferents. Theantiemetics of choice are cyclizine or levomepromazine, and anon-oral route is required to ensure its activity. Absorption ofbacterial toxins from a stagnant or ischaemic area of obstructedbowel can also trigger nausea via the chemoreceptor triggerzone: this situation would require the use of a CTZ antiemeticin addition to cyclizine, and haloperidol is the drug of choice,again by a non-oral route. Dehydration can complicate proximal obstruction, asintestinal secretions are vomited along with any ingested fluids.The volume of intestinal secretion can be reduced by usingantisecretory agents: hyoscine butylbromide and octreotide have Coloured x-rays showing a healthy human intestine, and the same intestineboth been used successfully to reduce pancreatic and upper which has become obstructed. Reproduced with permission from Bsipgastrointestinal secretions. Hyoscine butylbromide also reduces Vem/Science Photo Librarycolic. The inhibition of gastric secretions is described above.Dehydration can cause neuromuscular irritability and thirst:good mouth care is essential. If parenteral fluids are required,subcutaneous fluids are well tolerated and can be administered 27
  • ABC of palliative careat home if necessary. Nasogastric intubation does not relieve nausea and mayexacerbate nausea by irritating the pharynx. Use of anasogastric tube to empty the stomach before surgery is entirelyappropriate, however, and occasionally it may be appropriate touse intermittently. This depends entirely on the individualpatient. In patients with high obstruction, a venting PEG maypalliate frequent vomiting. It is important that patients and families understand thatintermittent vomiting is likely to continue despite the controlof nausea and colic. Patients with intestinal obstruction,however, may still enjoy the pleasure of eating and drinking;those with low obstruction will be able to absorb some nutritionin this way. Eating and drinking as desired should beencouraged. Man in cardiac intensive care on a respirator and linked to a nasogastric tube. Reproduced with permission from Deep Light Productions/Science Photo LibraryDrug induced nausea and vomitingMany drugs can cause nausea and vomiting. If the offendingdrug cannot be withdrawn, then identification of the way inwhich nausea is triggered should be part of symptom Causes of nausea and vomiting induced by drugsmanagement—for example, gastroprotectant treatment for Mechanism Drugsdrug induced gastritis, or an antiemetic acting at the CTZ for Chemical trigger at CTZ in Opioids, cytotoxics, digoxin,chemically induced nausea. brainstem imidazoles, anticoagulants, antibiotics Emesis induced by chemotherapy is a particular challenge. Gastrointestinal irritation Non-steroidal anti-inflammatoryEarly nausea is mediated by 5HT3 receptors in the drugs, iron supplements, antibiotics,gastrointestinal tract, and possibly in the CTZ, and is best cytotoxicspalliated by using antiemetic protocols recommended by the Gastric stasis Tricyclics, opioids, phenothiazines,oncology team. This will include the use of specific 5HT3 antimuscarinicsantagonists for the more emetogenic drugs, such as platinumand ipfosfamide. Regimens may also include corticosteroidsand sedative drugs. Delayed nausea after chemotherapycontinues to be a problem, and investigation of novel Mouth care is a vital part of comfort management forantiemetic agents is awaited. people who are dehydrated or vomitingOther considerationsOnce nausea is present, gastric emptying will be slow and oraldrugs may be unreliably absorbed from the gastrointestinaltract. In patients with nausea or vomiting, or both, it istherefore important to consider the best way in which tocontinue any necessary medications. Opioid analgesics can be given by injection (a continuous,subcutaneous infusion is usually more comfortable andconvenient than regular intermittent injections), suppository,transdermal patch, and transmucosal lozenge, according to the Further readingdrug and dose required. It is important to ensure that the dose G Doyle D, Hanks GW, Cherny N, Calman K, eds. The Oxford textbookis modified appropriately in conversion from the oral to an of palliative medicine. 3rd ed. Oxford: Oxford University Press,alternative route (see chapter 2). 2004. Vomiting is tiring, and patients may need to be encouragedto rest. Practical considerations include providing suitably largevomit bowls, particularly in gastric stasis or high obstruction,when volumes of vomit can be big. Mouth care is an importantcomponent of ensuring comfort for people who are vomitingor who are dehydrated.28
  • 8 Constipation, diarrhoea, and intestinal obstructionNigel Sykes, Carla Ripamonti, Eduardo Bruera, Debra GordonConstipationPrevalenceConstipation is the infrequent and difficult passage of smallhard faeces. About 80% of patients in palliative care willrequire laxatives.ConstipationDefinitionG Infrequent hard stoolsAssociated symptoms Symptoms of complicationsG Flatulence G AnorexiaG Bloating G Overflow diarrhoeaG Abdominal pain G ConfusionG Feeling of incomplete G Nausea and vomiting evacuation G Urinary dysfunctionAssessmentHistoryThe frequency and consistency of stools, nausea, vomiting,abdominal pain, distension and discomfort, mobility, diet, andprevious bowel habit should be determined. In patients with ahistory of diarrhoea, true diarrhoea should be distinguishedfrom overflow due to faecal impaction.ExaminationConstipation must be distinguished from obstruction due totumour. Faecal masses are indentable, mobile, and rarely tenderand may be palpable in the colon. In contrast, tumour masses are Radiograph of constipated patient showing masses and trapped gasusually hard, fixed, and often tender. In obstruction, auscultationof the abdomen may reveal high pitched tinkling bowel sounds. Digital examination may show an empty rectum or stoma in Causes of constipationconstipation—hard stools can lie higher in the bowel. However, Caused by cancer Associated with debility90% of impactions occur in the rectum, so examination can G Hypercalcaemia G Weaknessdistinguish overflow from true diarrhoea. G Intra-abdominal or pelvic disease G Inactivity or bed rest G Compression of spinal cord G Poor nutritionInvestigation with radiography G Cauda equina syndrome G Poor fluid intakeIf the diagnosis of constipation is still unclear, despite an G Depression G Confusionaccurate history and examination, supine and erect abdominal G Inability to reach theradiography will show the characteristic meniscal appearance of Caused by treatment toiletgas and fluid filled bowel. G Opioids Concurrent disorders G Antiemetics—cyclizine, ondansetron G Haemorrhoids G Anticholinergics—antispasmodics, G Anal fissure Assessment of constipation must include establishing in what antidepressants, neuroleptics G Endocrine dysfunction way the present pattern of bowel movements is different G Aluminium salts from the normal pattern and a physical examination, G Non-steroidal anti-inflammatory including general observation, abdominal palpation, and drugs rectal or stomal examinationManagement of constipation Abdominal pain AnalgesiaThe most important causes of constipation are immobility, poorfluid and dietary intake, and drugs, particularly opioids. Goodgeneral symptom control will minimise the first three of these, Constipationbut most patients will require laxatives. The aim of laxativetherapy is to achieve comfortable defecation, rather than any "Overflow diarrhoea" Urinary retentionparticular frequency of bowel movement. The choice of laxativedepends on the nature of the stools, acceptability to the patient, "Overflow incontinence"and cost. Dose should be titrated against individual response.Clinically it is useful to divide laxatives into two groups:G Predominantly softening Vicious cycle of constipation associated with opioid analgesicsG Predominantly stimulating peristalsis 29
  • ABC of palliative care Systematic reviews suggest most laxatives have similar A distended rectum or colon can be a major cause ofeffectiveness, but in constipation related to opioid use, doses agitation and pain in a dying patient. Evacuation of theand adverse effects can both be minimised by the use of a rectum or colon with suppositories alone or with ancombination of softening and stimulant laxatives. enema can give complete relief. The use of opioids to treat the pain of constipation only makes thePredominantly softening laxatives constipation, and ultimately the pain, worse and aSurfactant laxatives, such as poloxamer and docusate, act as vicious cycle ensuesdetergents, increasing water penetration and hence softeningthe stools. They are available in combination with the peristalsisstimulator dantron. Questions to guide choice of rectal laxative Osmotic laxatives—Lactulose is popular but can cause G Is the rectum or stoma full?bloating and flatulence and is too sweet for some patients. G Is the stool hard or soft?Saline laxatives, such as magnesium sulphate or hydroxide, G Is the rectum or stoma empty but the colon full?have a mixed osmotic and stimulant mode of action and at G Are the rectum and colon both full?higher doses can be strongly purgative. Magnesium hydroxide G Does the patient have rectal sensation?in combination with the lubricant softener liquid paraffin (now G Does the patient have normal anal tone?rarely used on its own) is a cheaper alternative to lactulose. G If a cord lesion is present what is the level?Macrogols (polyethylene glycols) are administered with fluid,and they do not therefore draw further fluid from the bodyinto the bowel. These drugs are now commonly used. Non-absorbable fluid is provided by polyethylene glycol. The Choices of rectal laxativevolume required can be difficult for ill patients. G Bisacodyl suppository—Evacuates stools from rectum or stoma; Bulk forming agents are stool normalisers rather than true for colonic inertialaxatives. They are less helpful in patients with cancer because G Glycerine suppository—Softens stools in rectum or stomaof the volume of water required, their unproved efficacy in G Phosphate enema—Evacuates stools from lower bowelsevere constipation, and the possibility of worsening an G Arachis oil enema—Softens hard impacted stoolsincipient obstruction.Stimulant laxativesThese drugs stimulate the myenteric plexus to induceperistalsis and reduce net absorption of water and electrolytesin the colon. The latency of action is 6–12 hours. They cancause abdominal colic and severe purgation. Giving a stimulantin combination with a softening laxative may reduce colic. Themost popular stimulants are senna and dantron. Patients givendantron may experience reddish discoloration of the urine andperianal rash, particularly in incontinent patients. (Dantronpreparations are reserved for patients who have advancedcancer.)Rectal laxativesSuppositories or enemas are sometimes necessary but shouldnever accompany an inadequate prescription of an orallaxative. They are appropriate for treating faecal impaction andfor conditions such as spinal cord compression, when longterm use may be necessary. Access and ability to getDiarrhoea to a toilet may be moreDiarrhoea is much less common than constipation in patients important in patientswith advanced disease, affecting less than 10% of patients with with constipation than supply of laxativescancer admitted to hospital or palliative care units.Causes Causes of diarrhoea in patients with advanced diseaseThe most common cause of diarrhoea in patients with G Drugs G Radiotherapyadvanced disease is use of laxatives. Patients may use laxatives Laxatives G Intestinal obstruction (includingerratically; some wait until they become constipated and then Antibiotics faecal impaction)use high doses of laxatives, with resultant rebound diarrhoea. Antacids G Concurrent disease, such asAmong elderly patients admitted to hospital with non- Chemotherapy inflammatory bowel disease (5-fluorouracil) G Malabsorptionmalignant disease, constipation with faecal impaction and G Diet Pancreatic carcinomaoverflow accounts for over half the cases of diarrhoea. G Tumour Gastrectomy Colon or rectum Ileal resectionManagement Pelvic ColectonyThe underlying cause should be investigated, but relief is Pancreatic (islet cell) G Infectiongenerally achieved with non-specific antidiarrhoeal agents— Carcinoidloperamide (up to 16 mg daily) or codeine (10–60 mg every four Fistulahours). Codeine may cause central effects, but these are rare30
  • Constipation, diarrhoea, and intestinal obstructionwith loperamide. Pathophysiological mechanisms of malignant intestinal Rarely, patients with intractable diarrhoea may require a obstruction (MIO)subcutaneous infusion of octreotide; the usual indication is ahigh effluent volume from a stoma. Diarrhoea due to Mechanical obstruction is caused by: G Extrinsic occlusion of the lumen due to an enlargement of themalabsorption, often associated with pancreatic cancer,responds to pancreatic enzyme supplementation. primary tumour or recurrence, mesenteric and omental masses, abdominal or pelvic adhesions (benign or malignant), postirradiation fibrosis; postirradiation intestinal damage G Intraluminal occlusion of the lumen due to neoplastic mass,Intestinal obstruction polypoidal lesions, or annular tumoral dissemination G Intramural occlusion of the lumen due to intestinal linitisEpidemiology and pathophysiology plasticaIntestinal obstruction is any process preventing the movement Functional obstruction (or adynamic ileus) is caused by intestinalof bowel contents, thus leading to the partial or complete motility disorders as a result of:blocking of faeces and gas through the intestinal passage. G Tumour infiltration of the mesentery or bowel muscle andMalignant intestinal obstruction (MIO) is common in patients nerves (carcinomatosis), malignant involvement of the coeliacwith abdominal or pelvic cancers, with the highest incidence plexus G Paraneoplastic neuropathy in patients with lung cancerranging from 5.5% to 51% in women with ovarian carcinoma, G Chronic intestinal pseudo-obstruction (CIP) mainly due toin whom it is a major cause of mortality. MIO occurs in 4.4% to diabetes mellitus, previous gastric surgery, neurological disorders,28.4% in patients with colorectal cancer and has been reported or drugs such as opioidsin patients with other advanced cancers, ranging from 3% to G Paraneoplastic pseudo-obstruction15% of cases. Intestinal obstruction can be partial or complete, Other causes such as inflammatory oedema, faecal impaction,single or multiple, and due to benign causes (ranging from constipating drugs such as opioids, anticholinergics, belladonna6.1% in ovarian and other gynaecological cancers to 48% in alkaloids, antidepressants, vinca alkaloids, etc), and dehydration cancolorectal cancer) or malignant causes. The small bowel is contribute to the development of intestinal obstruction or worsen themore commonly affected than the large bowel (61% v 33%) clinical pictureand both are affected in over a fifth of patients. Several mechanisms may be involved in the onset of MIO,and there is variability in both presentation and aetiology. At Depletion of water and salt in the lumenleast three factors occur in bowel obstruction: is the most important “toxic factor” in bowel obstructionG Accumulation of gastric, pancreatic, and biliary secretions that are a potent stimulus for further intestinal secretionsG Decreased absorption of water and sodium from the intestinal lumenG Increased secretion of water and sodium into the lumen as distension increases. Loss of fluids and electrolytes results in breakdown of thesequence of secretion and reabsorption in the gastrointestinaltract. Secretions accumulate in the bowel above theobstruction. The volume of secretions tends to increase afterintestinal distension and the consequent increase in the surfacearea, thus producing a vicious circle of secretion-distension-secretion. The vicious circle represented by distension-secretion-motorhyperactivity exacerbates the clinical picture, producingintraluminal hypertension and epithelial damage. Epithelialdamage generates an inflammatory response and the release ofprostaglandins, potent secretagogues, either by a direct effecton enterocytes or enteric nervous reflex. Furthermore,vasoactive intestinal polypeptide (VIP) might be released intothe portal and peripheral circulation. This mediates localintestinal and systemic pathophysiological changesaccompanying small intestinal obstruction, such as hyperaemiaand oedema of the intestinal wall and accumulation of fluid inthe lumen due to its stimulating effects.Signs, symptoms, diagnosis, and investigationsIn patients with cancer, compression of the bowel lumen developsslowly and often remains partial. As a consequence of the partialor complete occlusion to the lumen and/or dysmotility, theaccumulation of the unabsorbed secretions produces nausea,vomiting, intermittent or complete constipation, pain, and colickyactivity to surmount the obstacle that causes colicky pain. Radiograph showing megacolon secondary to rectal carcinomaAbdominal distension may be absent in high obstruction—that is,of the duodenum or proximal jejunum—and when the bowel is“plastered” down by extensive mesenteric spread. 31
  • ABC of palliative careCommon symptoms in cancer patients with MIOVomiting Intermittent or continuous Develops early and in large amounts in Biliary vomiting is almost odourless gastric, duodenal, and small bowel and indicates an obstruction in the obstruction and develops later in large upper part of the abdomen. The bowel obstruction presence of bad smelling and faeculent vomiting can be the first sign of an ileal or colonic obstructionNausea Intermittent or continuousColicky pain Variable intensity and localization If it is intense, periumbilical, and Overall acute pain that begins due to distension proximal to the occurring at brief intervals, it may be intensely and becomes stronger, or obstruction secondary to gas and an indication of an obstruction at the pain that is specifically localised, may fluid accumulation most of which jejunum-ileal level. In large bowel be a symptom of a perforation or an is produced by the gut; present in obstruction the pain is less intense, ileal or colonic strangulation. Pain that 75% of patients deeper, and occurs at longer intervals increases with palpation may be due to peritoneal irritationContinuous Variable intensity and localisation; Due to abdominal distension, tumourpain present in 90% of patients mass, and/or hepatomegalyDry mouth Due to severe dehydration and metabolic alterations but mostly due to the use of drugs with anticholinergic properties and poor mouth careConstipation Intermittent or complete In case of complete obstruction there In case of partial obstruction the is no evacuation of faeces and no flatus symptom is intermittentOverflow Result of bacterial liquefaction ofdiarrhoea faecal material Gastrointestinal symptoms caused by the sequence ofdistension-secretion-motor activity of the obstructed bowel occur Assessment in patients with suspected MIOin different combinations and intensity depending on the site of G Other causes of nausea, vomiting, and constipationobstruction. The symptoms referred to by the patient should be G Metabolic abnormalitiesmonitored daily. Vomiting can be evaluated in terms of quantity, G Type and doses of drugsquality, and number of daily episodes. Numerical or verbal G Nutritional and hydration status G Abdominal massesscales can be used to assess other symptoms, such as nausea, G Ascitespain, dry mouth, drowsiness, dyspnoea, hunger, thirst, etc. G Faecal impaction, examine rectum or stoma When a patient with cancer presents with suspected bowelobstruction, a full assessment should be performed. Variousradiological investigations can be performed in patients withsigns and symptoms of MIO. There is no point in proceeding Radiological investigationswith any of these, however, if the patient is too ill or has Plain radiographydeclined surgery. To document the dilated loops of bowel, air-fluid interfaces, orManagement of intestinal obstruction bothIn patients with advanced cancer MIO is rarely an emergency Contrast radiographyevent and intestinal strangulation is uncommon, thus there is Investigations help to evaluate dysmotility and partial obstruction and to define the site and extent of obstruction. Erect abdomentime to evaluate the most suitable therapeutic intervention for gastrografin (diatrizoate meglumine) is useful in such cases;each patient. In the face of a clearly incurable situation, moreover, it often provides excellent visualisation of proximaldecision making has to be a careful, balanced process with the obstructions and can reduce luminal oedema and help to resolveindividual patient at the centre. partial obstructions. Contrast studies of the stomach, gastric outlet, and small bowel can help to distinguish obstructions fromCurative or palliative surgery metastases, radiation injury, or adhesions. The diagnosis of aSurgical intervention should be considered in all patients with motility disorder is revealed by the slow passage of contrast throughMIO, though it should not routinely be undertaken in patients undilated bowel with no demonstrable point of obstructionwith advanced and end stage cancer who do not have a benign Retrograde, transrectal contrast studies (barium or water soluble medium enema) can rule out and diagnose isolated orcause of occlusion. Generally surgery will be appropriate only concomitant obstruction of the large bowelin selected patients such as those with mechanical obstruction Often the most efficient and practical assessment is computedand/or limited tumour bulk, single site of obstruction, and no tomography of abdomen and pelvis with appropriate oral and/oror minimal ascites, and those with a reasonable chance of rectal gastrografinfurther response to anticancer therapy. Computed tomography If surgery is being considered, you should assess whether: Abdominal CT with contrast is useful to evaluate the global extent of disease, to perform staging, and to assist in the choice ofG Palliative surgery is technically feasible? surgical, endoscopic, or simple pharmacological palliativeG The patient is likely to benefit from surgery not only in terms intervention for the management of the obstruction of survival but above all in terms of quality of life? Endoscopy Once a site of obstruction is identified in either the gastric outlet Published data show that in patients with advanced cancer, or colon, endoscopic studies may be helpful to evaluate the exactthe operative mortality is 9–40% and complication rates vary cause of the obstruction. This is particularly important whenfrom 9–90%. The type of obstruction (partial v complete) and endoscopic treatment approaches, such as stent placement, arethe method of surgical treatment (bypass v resection and consideredreanastomosis) have no measurable effect on the outcome. As32
  • Constipation, diarrhoea, and intestinal obstructionrecently published results are no better than those published in Contraindications to surgerythe past, improvements in surgical techniques andperioperative care seem not to influence the outcome. Results Obstruction secondary to cancermay reflect the poor clinical condition of patients at the time of Absolute contraindication G Intestinal motility problems due to diffuse intraperitonealsurgery. Although the surgical literature reports the survival of carcinomatosisthe obstructed patients operated on, most publications do not G Ascites requiring frequent paracentesisdescribe the outcome assessment of quality of life, G Diffuse palpable intra-abdominal massespostoperative complications, length of admission, control of G Multiple partial bowel obstruction with prolonged passage timesymptoms, and patient’s comfort. on radiograph examination G Recent laparotomy that showed that further corrective surgery Prognostic criteria are needed to help doctors to selectpatients who are likely to benefit from surgical intervention. was not possible G Previous abdominal surgery that showed diffuse metastaticBased on retrospective data, several authors have derived cancerclinical parameters that indicate low likelihood of clinical Relative contraindicationbenefit from surgical management of intestinal obstruction. G Widespread tumourPatients with two or more poor prognostic factors can have an G Patients aged 65 with cachexiaoperative mortality of 44% compared with 13% among those G Low serum albumin concentrationwith one or no risk factors. G Previous radiotherapy of the abdomen or pelvis Surgical palliation in patients with advanced cancer is a G Poor nutritional status G Liver metastases, distant metastases, pleural effusion, orcomplex issue, and the decision to proceed with surgery mustbe carefully evaluated for each individual. pulmonary metastases producing symptoms G Raised blood urea and creatinine concentrations, raised alkaline phosphatase activity, advanced tumour stage, short diagnosis toSelf expanding metallic stents obstruction intervalStents are an option in patients with malignant obstruction of G Poor performance statusthe gastric outlet, proximal small bowel, and colon. The stents G Extra-abdominal metastases producing symptoms difficult tomay be useful in the management of patients who are at control (for example, dyspnoea)surgical risk or in those presenting with large bowel obstructionin which decompression by a stent allows treatment ofcoexisting medical complications to enable surgery to be Consent to palliative surgery should include discussioncarried out at a later date, after staging of the disease and an of the surgical risks, complications, and alternatives such as pharmacological management for symptomoptimal colonic preparation. However, their usefulness in control and stenting and venting procedurespatients with end stage cancer has to be evaluated.Venting proceduresIn inoperable patients, the usual treatment consists of drainagewith a nasogastric tube associated with parenteral hydration. Anasogastric tube can cause great discomfort to the patient andseveral complications (for instance, erosion of the nasalcartilage, otitis media, aspiration pneumonia, oesophagitis andbleeding). Therefore, it should be considered a temporarymeasure to reduce the gastric distension when drugs areineffective for symptom control or when gastrostomy cannot becarried out. If continued drainage is required, operative orpercutaneous endoscopic gastrostomy are much better fordecompression of the GI tract.Pharmacological palliative treatmentThe pharmacological management of intestinal obstructiondue to advanced cancer focuses on the treatment of nausea,vomiting, pain, and other symptoms without the use of ventingprocedures. Dose and choice of drug should be tailored to theindividual patient. Most MIO patients cannot use the oralroute, and alternative routes should be considered. Continuoussubcutaneous infusion of drugs with a portable syringe driverallows the parenteral administration of different drugcombinations, produces minimal discomfort for the patient,and is easy to use at home. If a central venous catheter haspreviously been inserted, this can be used to administer drugsfor symptom control. Rectal and sublingual administration canoccasionally be used. Finally, some drugs, such as fentanyl, Percutaneous endoscopic gastrostomybuprenorphine, and scopolamine, may be also administeredtransdermally. Drugs used for treatment of nausea, vomiting and painPain G Opioid analgesicsVarious opioids, administered via different routes according to G Antiemeticsthe WHO guidelines, are the most effective drugs for the G Antisecretory drugs to decrease the GI secretions 33
  • ABC of palliative caremanagement of abdominal continuous and colicky painassociated with bowel obstruction. Anticholinergic drugs suchas hyoscine butylbromide, hyoscine hydrobromide, orglycopyrolate, can be added to opioids in the presence ofcolicky pain if the opioids alone are not effective.Nausea and vomitingThe box shows various drugs and doses used to control nauseaand vomiting in patients with bowel obstruction according tofirst principles and available data. Vomiting can be managedwith two different pharmacological approaches:G Drugs such as anticholinergics and/or octreotide, which Palliation of symptoms of intestinal obstruction reduce gastrointestinal secretions Drug/dose Actions CommentsG Antiemetics acting on the central nervous system, alone or in Cyclizine 150 mg/24 h Acts on vomiting Nausea is association with drugs to reduce gastrointestinal secretions. subcutaneous infusion centre controllable but may require addition vomiting will Hyoscine butylbromide is often used for both vomiting and of haloperidol persist in totalcolicky pain by some palliative care centres. Dry mouth is Haloperidol 1.5-3 mg Acts on obstructionreported to be the most severe side effect. Sucking ice cubes subcutaneous once chemoreceptor triggerand drinking small sips of water along with regular mouth care daily zonecan help. Octreotide, a synthetic analogue of somatostatin that Hyoscine Reduces motility and Both drugshas a more potent biological activity and a longer half life, has butylbromide 60-200 secretions reducealso been used to manage the symptoms of bowel obstruction. mg/24 h distension,Somatostatin and its analogues have been shown to inhibit the reducing nausea, vomiting andrelease and activity of gastrointestinal hormones, modulate Octreotide 300-1200 Reduces secretions colicgastrointestinal function by reducing gastric acid secretion, slow g/24 hintestinal motility, decrease bile flow, increase mucous Levomepromazine Acts on vomiting Sedating at higherproduction, and reduce splanchnic blood flow. It reduces 6.25-25 mg/24 h centre and dosesgastrointestinal contents and increases absorption of water and chemoreceptor triggerelectrolytes at intracellular level, via cAMP and calcium zone; useful secondregulation. The inhibitory effect of octreotide on both line antiemeticperistalsis and secretions reduces bowel distension and thesecretion of water and sodium by the intestinal epithelium,thereby reducing vomiting and pain. The drug may thereforebreak the vicious circle represented by secretion, distension,and contractile hyperactivity. Octreotide is considerably more effective and faster thanhyoscine butylbromide in reducing the amount ofgastrointestinal secretions in patients with a nasogastric tubeand in reducing the intensity of nausea and the number ofvomiting episodes in patients without a nasogastric tube.Moreover octreotide may prevent the development ofirreversible bowel obstruction in patients with recurrentepisodes of obstruction. Octreotide is an expensive drug and itscost to benefit ratio should be carefully considered, especiallyfor prolonged treatment. The cost of the drug, however, shouldbe interpreted in the widest possible sense—that is, if the use ofa drug results in a more rapid improvement of gastrointestinalsymptoms, which potentially limits the bed stay or theadmission to an inpatient unit, in addition to a better quality oflife for the patient. Among the antiemetics haloperidol is the drug of choice bypalliative care specialists. Haloperidol can be combined withhyoscine butylbromide and opioid analgesia in the same syringe. Computed tomography of “inoperable” intestinal obstructionMetoclopramide is the drug of choice in functional intestinalobstruction; it is not recommended in patients with completebowel obstruction because it may increase nausea, vomiting, andcolicky pain. Other antiemetics are the butyrophenones,antihistaminic-antiemetics, and phenothiazines. Parenteral corticosteroids are sometimes used for additionalsymptomatic relief of bowel obstruction. This is a difficult areato study and currently there is a lack of good evidence for themost appropriate role and dosing regimen.Hydration and total parenteral nutrition (TPN)In patients with inoperable intestinal obstruction the amount of34
  • Constipation, diarrhoea, and intestinal obstructionfluid administered should be assessed carefully. High levels ofintravenous and subcutaneous fluids may result in more bowelsecretions, thus it is necessary to keep a balance between theefficacy of the treatment and the side effects such as increasedvomiting, abdominal distension, and pain. The intensity of drymouth and thirst are independent of the quantity of parenteraland oral hydration. The intensity of nausea, however, isconsiderably lower in patients treated with more than 1litre/day of parenteral fluids. Hydration can also improvefatigue and delirium in selected patients. Intravenous hydration Further readingcan be difficult and uncomfortable for some patients with end G Ripamonti C, Bruera E, eds. Gastrointestinal symptoms in advancedstage cancer. Hypodermoclysis is a simple technique for cancer patients. Oxford: Oxford University Press, 2002.rehydration that offers many advantages over the intravenousroute, especially in patients at home. The role of TPN in themanagement of patients with inoperable bowel obstruction iscontroversial. No data are available on the survival rates orquality of life in patients with advanced cancer treated with this.TPN may be considered a futile treatment or an acceptablemeans of maintaining patient autonomy; hence, while it is notcommonly indicated, it will remain a decision made on anindividual basis. 35
  • 9 Depression, anxiety, and confusionMari Lloyd-WilliamsDespite many advances in the palliation and management of the Losses and threats of major illnesssymptoms of advanced cancer, the assessment and management G Knowledge of a life threatening diagnosis, prognosticof psychological and psychiatric symptoms are still poor. uncertainty, fears about dying and death A common misapprehension is to assume that depression and G Uncontrolled physical symptoms such as pain and nauseaanxiety represent understandable reactions to incurable illness. G Unwanted effects of medical and surgical treatmentsWhen cure is not possible, the analytical approach we adopt to G Loss of functional capacity, loss of independence, enforcedphysical and psychological signs and symptoms is often forgotten. changes in roleThis error of approach and the lack of diagnostic importance G Spiritual questions, uncertainty and distressgiven to major and minor symptoms of depression result in G Practical issues such as finance, work, housing G Changes in relationships, concern for dependantsunderdiagnosis and undertreatment of psychiatric disorder. G Changes in body image, sexual dysfunction, infertility Psychological adjustment reactions after diagnosis orrelapse often include fear, sadness, perplexity, and anger. Theseusually resolve within a few weeks with the help of the patient’sown personal resources, family support, and professional care.However, 10–20% of patients will develop formal psychiatricdisorders that require specific evaluation and management inaddition to general support. It is important to recognise psychiatric disordersCauses because, if untreated, they add to the suffering of patients and their friends and relativesDepression and anxiety are usually reactions to the losses andthreats of the medical illness. Other risk factors oftencontribute. Confusion usually reflects an organic mental disorder from oneor more causes, often worsened by bewilderment and distress,discomfort or pain, and being in unfamiliar surroundings withunfamiliar carers. Elderly patients with impaired memory,hearing, or sight are especially at risk. Unfortunately, reversible Risk factors for anxiety and depressioncauses of confusion are underdiagnosed, and this causes G Organic mental disordersunnecessary distress in patients and families. G Poorly controlled physical symptoms G Poor relationships and communication between staff and patient G Unwanted effects of medical and surgical treatmentsClinical features G History of mood disorder or misuse of alcohol or drugs G Personality traits hindering adjustment, such as rigidity,Depression and anxiety pessimism, extreme need for independence and controlThese are broad terms that cover a continuum of emotional G Concurrent life events or social difficultiesstates. It is not always possible on the basis of a single interview G Lack of support from family and friendsto distinguish self limiting distress, which forms a natural partof the adjustment process, from the psychiatric syndromes ofdepressive illness and anxiety state, which need specifictreatment. Borderline cases are common, and both the somaticand psychological symptoms of depression and anxiety canmake diagnosis difficult. Somatic symptoms—Depression may manifest itself asintractable pain, while anxiety can manifest itself as nausea ordyspnoea. Such symptoms may seem disproportionate to themedical pathology and respond poorly to medical treatments. Common causes of organic mental disorders Psychological symptoms—Although these might seemunderstandable, they differ in severity, duration, and quality G Prescribed drugs—opioids, psychotropic drugs, corticosteroids, some cytotoxic drugsfrom “normal” distress. Depressed patients seem to loathe G Infection—respiratory or urinary infection, septicaemiathemselves, over and above loathing their disease. A useful G Macroscopic brain pathology—primary or secondary tumour,analogy is that the patient who is sad blames the illness for how Alzheimer’s disease, cerebrovascular disease, HIV dementiathey feel, whereas a patient who is depressed blames themselves G Metabolic—dehydration, electrolyte disturbance, hypercalcaemia,for their illness. This expresses itself through guilt about being organ failureill and a burden to others, pervasive loss of interest and G Drug withdrawal—benzodiazepines, opioids, alcoholpleasure, and hopelessness about the future. Attempted suicideor requests for euthanasia, however rational they might seem,invariably indicate clinical depression. It is important that suchthoughts are elicited—for example, by asking “have you everfelt so bad that you wanted to harm or kill yourself?”36
  • Depression, anxiety, and confusionConfusion Symptoms and signs of depressionThis may present as forgetfulness, disorientation in time andplace, and changes in mood or behaviour. The two main Somatic G Reduced energy, fatigueclinical syndromes are dementia (chronic brain syndrome), G Disturbed sleep, especially early morning wakingwhich is usually permanent, and delirium (acute brain G Diminished appetitesyndrome), which is potentially reversible. G Psychomotor agitation or retardation Delirium, which is more relevant to palliative care, comprises Psychologicalclouding of consciousness with various other abnormalities of G Low mood present most of the time, characteristically worse inmental function from an organic cause. Severity often the morningfluctuates, worsening at night. Dehydration, neglect of personal G Loss of interest and pleasurehygiene, and accidental self injury may hasten physical and G Reduced concentration and attention G Indecisivenessmental decline. Noisy, demanding, or aggressive behaviour may G Feelings of guilt or worthlessnessupset or harm other people. So called “terminal anguish” is a G Pessimistic or hopeless ideas about the futurecombination of delirium and overwhelming anxiety in the last G Suicidal thoughts or actsfew days of life. A physical cause usually contributes to“terminal anguish.”Recognition Symptoms and signs of anxietyVarious misconceptions about psychiatric disorders in medicalpatients contribute to their widespread under-recognition and Psychological G Apprehension, worry, inability to relaxundertreatment. Education and training in communication G Difficulty in concentrating, irritabilityskills, for both patients and staff, could help to remedy this. G Difficulty falling asleep, unrefreshing sleep, nightmares Standardised screening instruments that have beenvalidated for use in palliative care patients include the Motor tension G Muscular aches and fatigueEdinburgh depression scale and the minimental state (MMS) G Restlessness, trembling, jumpinessor mental status schedule (MSS) for cognitive impairment. G Tension headachesThough not sensitive or specific enough to substitute for Autonomicassessment by interview, they can help to detect unsuspected G Shortness of breath, palpitations, lightheadedness, dizzinesscases, contribute to diagnostic assessment of probable cases, G Sweating, dry mouth, “lump in throat”and provide a baseline for monitoring progress. G Nausea, diarrhoea, urinary frequency Knowledge of previous personality and psychological state ishelpful in identifying high risk patients or those with evolvingsymptoms, and relatives’ observations of any recent changeshould be obtained. Symptoms and signs of delirium G Clouding of consciousness (reduced awareness of environment)Prevention and management G Impaired attention G Impaired memory, especially recent memoryGeneral guidelines for both prevention and management G Impaired abstract thinking and comprehensioninclude providing an explanation about the illness in the G Disorientation in time, place, or personcontext of ongoing supportive relationships with known and G Perceptual distortions—illusions and hallucinations, usually visual or tactiletrusted professionals. Patients should have the opportunity to G Transient delusions, usually paranoidexpress their feelings without fear of censure or abandonment. G Psychomotor disturbance—agitation or underactivityThis facilitates the process of adjustment, helping patients to G Disturbed cycle of sleeping and waking, nightmaresmove on towards accepting their situation and making the most G Emotional disturbance—depression, anxiety, fear, irritability,of their remaining life. euphoria, apathy, perplexity Visits from a specialist palliative care nurse or attendance ata palliative care day centre, combined with follow-up by theprimary healthcare team, often benefit both patients andfamilies. An opportunity to explore and express spiritualconcerns is often helpful for all those patients, including thosewith no specific religious belief. Psychiatric referral is indicatedwhen emotional disturbances are severe, atypical, or resistant to Why psychiatric disorders go unrecognisedtreatment; when there is concern about suicide; and on the G Patients are reluctant to voice emotional complaints—fear ofrare occasions when compulsory measures under the Mental seeming weak or ungrateful; stigmaHealth Act 1983 seem to be indicated. G Professionals are reluctant to inquire—lack of time, lack of skill, emotional self protection Non-pharmacological therapies increase a patient’s sense of G Attributing somatic symptoms to medical illnessparticipation and control. Usually delivered in regular planned G Assuming emotional distress is inevitable and untreatablesessions, they can also help in acute situations—for example,deep breathing, relaxation techniques, or massage for acuteanxiety or panic attacks. 37
  • ABC of palliative care For bedridden patients who are anxious or confused as well Principles of psychological managementas sick, it is important to provide nursing care from a fewtrusted people; a quiet, familiar, safe, and comfortable G Sensitive breaking of bad news G Providing information in accord with individual wishesenvironment; explanation of any practical procedure in G Permitting expression of emotionadvance; and an opportunity to discuss underlying fears. G Clarification of concerns and problems The relatives’ need for explanation and support must not G Patient involved in making decisions about treatmentbe forgotten. G Setting realistic goals G Appropriate package of medical, psychological, and social care G Continuity of care from named staffPsychotropic drugsFor more severe cases, drug treatment is indicated in additionto, not instead of, the general measures described above. Some psychological and practical therapies G Brief psychotherapy—cognitive-behavioural, cognitive-analytic,Depression problem solvingDrugs should be prescribed if a definite depressive syndrome is G Group discussions for information and supportpresent or if a depressive adjustment reaction fails to resolve G Music therapy G Art therapywithin a few weeks. The antidepressant effect of all these drugs G Creative writingtakes at least four to six weeks to become evident. G Relaxation techniques Tricyclic antidepressants produce a worthwhile response in G Meditationabout 80% of patients but have considerable anticholinergic side G Hypnotherapyeffects in the doses necessary for a therapeutic response and G Aromatherapytherefore are not routinely indicated in palliative care settings. G Practical activity—such as craft work, swimming Selective serotonin reuptake inhibitors such as sertraline (50 mgdaily) or paroxetine (20 mg daily) have few anticholinergiceffects, are non-sedative, and are safe in overdose. They may,however, cause nausea, diarrhoea, headache, or anxiety. Thenewer antidepressants, such as mirtazapine, seem to be bettertolerated. Other treatments—The use of drugs such as lithium orcombinations of antidepressants should be prescribed andmanaged in consultation with a psychiatrist. Psychostimulantscan be used but care needs to be taken regarding doses.AnxietyBenzodiazepines are best limited to short term or intermittentuse; prolonged use may lead to a decline in anxiolytic effectand cumulative psychomotor impairment. Low doseneuroleptic drugs such as haloperidol 1.5–5 mg daily are analternative. blockers are useful for autonomic overactivity.Chronic anxiety is often better treated with a course ofantidepressant drugs, especially if depression coexists. Acute severe anxiety can present as an emergency. It maymask a medical problem—such as pain, pulmonary embolism,internal haemorrhage, or drug or alcohol withdrawal—or it mayhave been provoked by psychological trauma such as seeinganother patient die. Whether or not the underlying cause isamenable to specific treatment, sedation is usually required.Lorazepam, a short acting benzodiazepine, can be given as 1 mgor 2.5 mg tablets orally or sublingually. Alternatively, midazolam5–10 mg can be given subcutaneously. An antipsychotic such ashaloperidol 5–10 mg may be more appropriate if the patient isalso psychotic or confused. Medical assessment needs to berepeated every few hours, and the continued presence of askilled and sympathetic companion is helpful.ConfusionIt is best to identify any treatable medical causes beforeprescribing further drugs, which may make the confusionworse. In practice, however, sedation maybe required. For mild Examples of art therapy—the painter of these figures is a man with cancernocturnal confusion, an antipsychotic such as haloperidol of the larynx. Having lost his voice, his partner, and his hobby of playing the1.5–5 mg at bedtime is often sufficient. For severe delirium, a trumpet, he was depressed, angry, and in pain. He likened himself to an aircraft being shot down in flames or to a frightened bird at the mercy of asingle dose of haloperidol 5–10 mg may be offered in tablet or larger bird of prey. He has since improved and wrote to tell his doctor howliquid form and a benzodiazepine can be added. much it helped to draw his “awful thoughts” (with permission from Camilla It may be possible to withdraw the drugs after one or two Connell, art therapist at Royal Marsden Hospital)days if reversible factors such as infection or dehydration have38
  • Depression, anxiety, and confusionbeen dealt with. Otherwise, sedation may need to be continueduntil death, preferably by continuous subcutaneous infusion,for which a suitable regimen might be as much as haloperidol10–30 mg with midazolam 30–60 mg every 24 hours. Thesedrugs can be mixed in the same syringe.OutcomeIt is vitally important to be as vigilant for symptoms of anxiety,depression, and confusion in these patients as it is for physical Further readingsymptoms. Symptoms such as anxiety or depression shouldnever be considered inevitable. Prompt assessment of such G Barraclough J. Cancer and emotion. Chichester: John Wiley, 1994. G Lloyd-Williams M, ed. Psychosocial issues in palliative care. Oxford:symptoms together with appropriate management can greatly Oxford University Press, 2003.improve the overall quality of life for all patients. 39
  • 10 EmergenciesStephen Falk, Colette ReidEmergencies in most medical specialties are immediate lifethreatening events and successful outcome is measured by Major emergencies in palliative careprolongation of life. While prolongation of life is rarely the G Hypercalcaemiamain goal in palliative care, some acute events have to be G Obstruction of superior vena cavatreated as an emergency if a favourable outcome is to be G Spinal cord compressionachieved. As in any emergency, the assessment must be as G Bone fracturesprompt and complete as possible. In patients with advanced G Other emergencies, such as haemorrhage and acute anxiety and depression, are discussed elsewhere in this seriesmalignancy, factors to consider include:G The nature of the emergencyG The general physical condition of the patientG Disease status and likely prognosis Questions to ask when considering management ofG Concomitant pathologies emergencies in patients with advanced diseaseG Symptoms G What is the problem?G The likely effectiveness and toxicity of available treatments G Can it be reversed?G Wishes of patient and carers. G What effect will reversal of the symptom have on a patient’s overall condition? While unnecessary hospital admission may cause distress for G What is your medical judgment?the patient and carers, missed emergency treatment of G What does the patient want?reversible symptoms can be disastrous. G What do the carers want? G Could active treatment maintain or improve this patient’s quality of life?HypercalcaemiaHypercalcaemia is the most common life threatening metabolicdisorder encountered in patients with cancer. The incidencevaries with the underlying malignancy, being most common inmultiple myeloma and breast cancer (40–50%), less so in non- Presenting features of hypercalcaemiasmall cell lung cancer, and rare in small cell lung cancer and Mild symptoms Severe symptoms and signscolorectal cancer. G Nausea G Gross dehydration G Anorexia and vomiting G Drowsiness It is important to remember the existence of non-malignant G Constipation G Confusion and comacauses of hypercalcaemia—particularly primary G Thirst and polyuria G Abnormal neurologyhyperparathyroidism, which is prevalent in the general G Cardiac arrhythmiaspopulation. The pathology of hypercalcaemia is mediated by factorssuch as parathyroid related protein, prostaglandins, and localinteraction by cytokines such as interleukin 1 and tumour Management of hypercalcaemianecrosis factor. Bone metastases are commonly but not G Check serum concentration of urea, electrolytes, albumin, andinvariably present. calciumManagement G Calculate corrected calcium concentration G Corrected Ca measured Ca (40–albumin) 0.02 mmol/1Mild hypercalcaemia (corrected serum calcium concentration G Corrected calcium value is used for decisions about treatment 3.00 mmol/1) is usually asymptomatic, and treatment is G Rehydrate with intravenous fluid (0.9% saline)required only if a patient has symptoms. For more severe G Amount and rate depends on clinical and cardiovascular statushypercalcaemia, however, treatment can markedly improve and concentrations of urea and electrolytessymptoms even when a patient has advanced disease and G After a minimum of 2 L of intravenous fluids give bisphosphonatelimited life expectancy to make the end stages less traumatic infusion Disodium pamidronate 90 mg over 2 hours orfor the patient and carers. Sodium clodronate 1500 mg over 4 hours or Treatment with bisphosphonate normalises the serum Zoledronic acid 4 mg over 15 minutescalcium concentration in 80% of patients within a week. G Measure concentrations of urea and electrolytes at daily intervalsTreatment with calcitonin or mithramycin is now largely and give intravenous fluids as necessaryobsolete. Corticosteroids are probably useful only when the Normalisation of serum calcium takes 3–5 daysunderlying tumour is responsive to this cytostatic agent—such Do not measure serum calcium for at least 48 hours afteras myeloma, lymphoma, and some carcinomas of the breast. rehydration as it may rise transiently immediately after treatment G Prevent recurrence of symptoms Some symptoms, particularly confusion, may be slow to Treat underlying malignancy if possible orimprove after treatment, despite normalisation of the serum Consider maintenance treatment with bisphosphonates andcalcium concentration. Always consider treating the underlying monitor serum calcium every three weeks ormalignancy to prevent recurrence of symptoms as the median Monitor serum calcium every three weeks or less if the patientduration of normocalcaemia after bisphosphonate infusion is has symptoms, and repeat bisphosphonate infusion asonly three weeks. If effective systemic therapy has been appropriateexhausted, or is deemed inappropriate, however, oralbisphosphonates (such as clodronate 800 mg twice daily) orparenteral infusions (every three to four weeks) should be40
  • Emergenciesconsidered. Maintenance intravenous bisphosphonates may beadministered at a day centre or outpatient department. Oralpreparations have the disadvantages of being poorly absorbedand have to be taken at least an hour before or after food. Arecent systematic review suggests there is more evidence tosupport the intravenous route.Obstruction of superior vena cavaThis may arise from occlusion by extrinsic pressure,intraluminal thrombosis, or direct invasion of the vessel wall.Most cases are due to tumour within the mediastinum, of whichup to 75% will be primary bronchial carcinomas. About 3% ofpatients with carcinoma of the bronchus and 8% of those withlymphoma will develop obstruction.Aetiology of obstruction of superior vena cavaCarcinoma of the bronchus 65–80%Lymphoma 2–10%Other cancers 3–13%Benign causes (now rare) Benign goiter, aortic aneurysm (syphilis), thrombotic syndromes, idiopathic sclerosing mediastinitisUnknown or undiagnosed 5%Management Patient with superior vena caval obstruction showing typical signs (reproduced with patient’s permission)Conventionally, obstruction of the superior vena cava has beenregarded as an oncological emergency requiring immediatetreatment. If it is the first presentation of malignancy, treatmentwill be tempered by the need to obtain an accurate histologicaldiagnosis to tailor treatment for potentially curable diseases,such as lymphomas or germ cell tumours, and for diseases such Clinical features of superior vena caval obstructionas small cell lung cancer that are better treated with Symptomschemotherapy at presentation. G Tracheal oedema and shortness of breath In advanced disease, patients need relief from acute G Cerebral oedema with headache worse on stoopingsymptoms—of which dyspnoea and a sensation of drowning can G Visual changesbe most frightening—and high dose corticosteroids and G Dizziness and syncoperadiotherapy or chemotherapy should be considered. In non- G Swelling of face, particularly periorbital oedema G Neck swellingsmall cell lung cancer palliative radiotherapy gives symptomatic G Oedema of arms and handsimprovement in 60% of patients, with a median duration ofpalliation of three months. Up to 17% of patients may survive Clinical signs G Rapid breathingfor a year. If radiotherapy is contraindicated or being awaited, G Periorbital oedemacorticosteroids alone (dexamethasone 16 mg/day) may give G Suffused injected conjunctivaerelief. Stenting (with or without thrombolysis) of the superior G Cyanosisvena cava should be considered for both small cell and non- G Non-pulsatile distension of neck veinssmall cell lung cancer either as initial treatment or for relapse. G Dilated collateral superficial veins of upper chest G Oedema of hands and arms Urgent initiation of pharmacological, practical, andpsychological management of dyspnoea is paramount and usuallyincludes opioids, with or without benzodiazepines. Opioid dosesare usually small—such as 5 mg oral morphine every four hours.It is important to review all prescriptions of corticosteroids in viewof their potential adverse effects. We recommend stoppingcorticosteroids after five days if no benefit is obtained and agradual reduction in dose for those who have responded.Spinal cord compressionCompression of the spinal cord occurs in up to 5% of patients Presentation of spinal cord compression can be subtlewith cancer. The main problem in clinical practice is failure of in the early stages. Any patient with back pain and subtlerecognition. It is not uncommon for a patient’s weak legs to be neurological symptoms or signs should have radiologicalattributed to general debility and urinary and bowel symptoms investigations, with magnetic resonance imaging whento be attributed to medication. Neurological symptoms and possiblesigns can vary from subtle to gross, from upper motor neurone 41
  • ABC of palliative careto lower motor neurone, and from minor sensory changes toclearly demarcated sensory loss. Prompt treatment is essential if function is to bemaintained: neurological status at the start of treatment is themost important factor to influence outcome. If treatment isstarted within 24–48 hours of onset of symptoms neurologicaldamage may be reversible.Reasons for delay in treatment of spinal cord compressionG Failure to recognise from early symptomsG Lack of clear referral pathwayG No investigation pathway Spinal cord compression can arise from intraduralmetastasis but is more commonly extradural in origin. In 85%of cases cord damage arises from extension of a vertebral bodymetastasis into the epidural space, but other mechanisms ofdamage include vertebral collapse, direct spread of tumourthrough the intervertebral foramen (usually in lymphoma ortesticular tumour), and interruption of the vascular supply. The frequency with which a particular spinal level isaffected reflects the number and volume of vertebral bodies ineach segment—about 10% of compressions are cervical, 70%thoracic, and 20% lumbosacral. It is important to rememberthat more than one site of compression may occur, and this isincreasingly recognised with improved imaging techniques. Magnetic resonance image showing patient with spinalDecisions on investigations performed and treatment given will cord compression at two different sites (arrows)depend on the patient’s wishes and the stage of the disease.Only in exceptional circumstances will corticosteroids not formpart of the treatment plan. The earliest symptom of spinal cord compression is backpain, sometimes with symptoms of root irritation, causing agirdle-like pain, which is often described as a “band” that tendsto be worse on coughing or straining. Most patients have painfor weeks or months before they start to detect weakness.Initially, stiffness rather than weakness may be a feature, andtingling and numbness usually starts in both feet and ascends Management of spinal cord compressionthe legs. In contrast with pain, the start of myelopathy isusually rapid. Urinary symptoms such as hesitancy or Main points G Except for unusual circumstances give oral dexamethasoneincontinence and perianal numbness are late features. 16 mg/dayIncreasing compression of the spinal cord is often marked by G Urgent treatment, definitely within 24 hours of start ofimprovement or resolution of the back pain but can be symptomsassociated with worsening of pain. G Interdisciplinary approach involving oncologists, Examination may reveal a defined area of sensory loss and neurosurgeons, radiologists, nurses, physiotherapists,brisk or absent reflexes, which may help to localise the lesion. occupational therapistsIn patients unfit to undergo more detailed investigations, plain Treatment options G Continue with dexamethasone 16 mg/day plusradiology can reveal erosion of the pedicles, vertebral collapse, G Radiation onlyand, occasionally, a large paravertebral mass. These may help in For most situationsthe application of palliative radiotherapy. In contrast with Radiosensitive tumour without spinal instabilitymyelography with localised computed tomographic x-rays for G Surgery and radiationsoft tissue detail, magnetic resonance imaging is now Spinal instability, such as fracture or compression by boneconsidered the investigation of choice: it is non-invasive and No tissue diagnosis (when needle biopsy guided by computedshows the whole spine, enabling detection of multiple areas of tomography is not possible) G Surgery onlycompression. Relapse at previously irradiated area Progression during radiotherapyManagement G ChemotherapyAfter palliative radiotherapy, 70% of patients who were Paediatric tumours responsive to chemotherapyambulatory at the start of treatment retain their ability to walk Adjuvant treatment for adult tumours responsive toand 35% of patients with paraparesis regain their ability to chemotherapywalk, while only 5% of completely paraplegic patients do so. Relapse of previously irradiated tumour responsive to chemotherapyThese figures underline the importance of early diagnosis, as G Corticosteroids alone75% of patients have substantial weakness at presentation to Final stages of terminal illness and patient either too unwell tooncology units. have radiotherapy or unlikely to live long enough to receive any Retrospective analysis has not shown an advantage for benefitspatients managed by laminectomy and radiotherapy overradiotherapy alone. A recent prospective study, however, has42
  • Emergenciesindicated that radiotherapy plus surgery obtained morefunctional benefit than radiotherapy alone, even in thosepatients with initial poor performance status. Surgical decompression is also indicated for cases when:G A tissue diagnosis is required (if biopsy guided by computed tomography is not possible)G Deterioration occurs during radiotherapyG There is bone destruction causing spinal cord compression. For a small number of fit patients with disease anterior tothe spinal canal, excellent results have been reported for ananterior approach for surgical decompression and vertebralstabilisation—80% of the patients became ambulant. For reliefof the mechanical problems due to bone collapse, laminectomydecompression has to be accompanied by spinal stabilisation.Such surgery is difficult and not always appropriate.Bone fractureBone metastases are a common feature of advanced cancer.Bone fracture may also be due to osteoporosis or trauma.Fractures can present in various forms, including as an acuteconfusional state.ManagementIf fracture of a long bone seems likely, as judged by the Radiograph showing pathological fracture of the femurpresence of cortical thinning, prophylactic internal fixationshould be considered. Once a fracture has occurred the Further readingavailable options include external or internal fixation; the site G Doyle D, Hanks G, Cherny N, Calman, K, eds. Oxford textbook ofof the fracture and the general condition of the patient palliative medicine. 3rd ed. Oxford: Oxford University Press, 2003.determines their relative merits. G Levack P, Graham J, Collie D, Grant R, Kidd J, Kunkler I, et al. Radiotherapy is usually given in an attempt to enhance Don’t wait for a sensory level—listen to the symptoms: ahealing and to prevent further progression of the bony prospective audit of the delays in diagnosis of malignant cordmetastasis and subsequent loosening of any fixation. compression. Clin Oncol (R Coll Radiol) 2002;14:472–80. Evidence exists that, when combined with oncolytic therapy G Ross JR, Saunders Y, Edmonds PM, Patel S, Broadley KE, Johnston SRD. Systematic review of role of bisphosphonates onin most solid tumours, oral bisphosphonates can reduce skeletal morbidity in metastatic cancer. BMJ 2003;327:469–74.skeletal morbidity (hypercalcaemia, vertebral fracture, and G Rowell NP, Gleeson FV. Steroids, radiotherapy, chemotherapyneed for palliative radiotherapy). and stents for superior vena caval obstruction in carcinoma of the bronchus. Cochrane Database Syst Rev 2005;(2):CD001316. 43
  • 11 The last 48 hoursJames AdamDuring the last 48 hours of life, patients experience increasing Principles of managing the last 48 hoursweakness and immobility, loss of interest in food and drink, G Problem solving approach to symptom controldifficulty in swallowing, and drowsiness. Signs may include a G Avoid unnecessary interventionsnew gauntness, changes in breathing pattern, cool and G Review all drugs and symptoms regularlysometimes oedematous peripheries, and cognitive impairment. G Maintain effective communicationWith an incurable and progressive illness, this phase can usually G Ensure support for family and carersbe anticipated, but sometimes the deterioration can be suddenand distressing. Control of the symptoms and support of thefamily take priority, and the nature of the primary illnessbecomes less important. This is a time when levels of anxiety,stress, and emotion can be high for patients, families, and other Routes of administration for drugs used in last 48 hourscarers. It is important that the healthcare team adopts asensitive yet structured approach. Route Drug OralThe Liverpool care pathway (LCP) All drug typesThis pathway provides multidisciplinary documentation and Sublingualprompted guidelines towards achieving important goals for Antiemetic Hyoscine hydrobromide 0.3 mg/6 hours (Kwells)patients with cancer and their families in the dying phase. Sedative or Lorazepam 0.5–2.5 mg/6 hours (fast acting)Although it was developed in a hospice, there are adaptations anxiolyticfor acute and community settings that encourage discussion Transdermalaround the diagnosis of dying and reduction of unnecessary or Opioid Fentanyl or buprenorphine (only if patientfutile interventions (including CPR) at this stage. It also already on patches)provides a means to measure symptom control in the dying Antiemetic Hyoscine hydrobromide 1 mg/72 hourspatient and, through analysis of variance, identify educational (Scopaderm)and resource needs. Subcutaneous*Identifying when death seems imminent Opioids Diamorphine (individual dose titration)(from the Liverpool care pathway) Oxycodone and alfentanil may be alternatives where there is morphineThe multiprofessional team has agreed that the patient is dying, intoleranceand two of the following may apply: NSAIDs Diclofenac (infusion) 150 mg/24 hoursG Bed bound Antiemetics Cyclizine 25–50 mg/8 hours: up toG Semicomatose 150 mg/24 hoursG Only able to take sips of fluid Metoclopramide 10 mg/6 hours: 40–80 mg/G No longer able to take tablets 24 hours Levomepromazine 6.25–25 mg bolus: 6.25 mg titrated up to 250 mg/24 hours via syringe driver (sedating at higher doses)Principles Haloperidol (also useful for confusion with altered sensorium associated with opioidAn analytical approach to symptom control continues but toxicity) 2.5–5 mg bolus: 5–30 mg/24 hoursusually relies on clinical findings rather than investigation. This Sedative, anxiolytic, Midazolam 2.5–10 mg bolus: 5–60 mg/24approach spans all causes of terminal illness and applies to care anticonvulsant hours (anticonvulsant starting doseat home, hospital, or hospice. 30 mg/24 hours) Drugs are reviewed with regard to need and route of Phenobarbitone (for refractory cases) Antisecretory Hyoscine hydrobromide 0.4–0.6 mgadministration. Previously “essential” drugs such as bolus; 2.4 mg/24 hoursantihypertensives, corticosteroids, antidepressants, and Glycopyrronium and hyoscine butylbromidehypoglycaemics are often no longer needed and analgesic, (non-sedating alternatives)antiemetic, sedative, and anticonvulsant drugs form the new Somatostatin Octreotide (for large volume vomit“essential” list to work from. The route of administration analogue associated with bowel obstruction)depends on the clinical situation and characteristics of the 300–600 g/24 hoursdrugs used. Some patients manage to take oral drugs until near Rectalto death, but many require an alternative route. Any change in Opioids Morphine 15–30 mg/4 hoursmedication relies on information from the patient, family, and Oxycodone 30–60 mg/8 hours (named patient only)carers (both lay and professional) and regular medical review NSAIDs Diclofenac 100 mg once dailyto monitor the level of symptom control and side effects. Antiemetic Domperidone 30–60 mg/6 hours This review should include an assessment of how the family Prochlorperazine 25 mg twice dailyand carers are coping; effective communication with all Cyclizine 50 mg three times a dayinvolved should be maintained and lines of communication Sedative and Diazepam rectal tubes (also anticonvulsant)made clear and open and documented if appropriate. The anxiolytic 5–10 mg/2.5 ml tubesknowledge that help is available is often a reassurance and can *All preparations diluted in sterile water except diclofenac (0.9%influence the place of death. saline)44
  • The last 48 hoursSymptom control Opioid treatment for pain controlPain G Starting dose—Immediate release morphine 5 mg every four hours by mouthPain control is achievable in 80% of patients by following the G Increments—A third of current dose (but varies according toWHO guidelines for use of analgesic drugs, as outlined in “breakthrough analgesia” required in previous 24 hours). Forchapter 2. A patient’s history and examination are used to example, immediate release morphine 15 mg every four hours byassess all likely causes of pain, both benign and malignant. mouth is increased to 20 mg every four hoursTreatment (usually with an opioid) is individually tailored, the G Breakthrough analgesia—A sixth of 24 hour dose. For example,effect reviewed, and doses titrated accordingly. Acute episodes with diamorphine 60 mg delivered subcutaneously by syringe driver over 24 hours, give diamorphine 10 mg subcutaneously asof pain are dealt with urgently in the same analytical fashion needed for breakthrough painbut require more frequent review and provision of appropriate G Conversion ratio—Morphine by mouth (or rectum) to“breakthrough” analgesia. If a patient is already receiving subcutaneous diamorphine is 3:1. For example, sustained releaseanalgesia then this is continued through the final stages; pain morphine 30 mg every 12 hours by mouth plus three doses ofmay disturb an unconscious patient as the original cause of the immediate release morphine 10 mg by mouth gives total dose ofpain still exists. oral morphine 90 mg every 24 hours; convert to diamorphine If oral administration is no longer possible the 30 mg/24 hours delivered subcutaneouslysubcutaneous route provides a simple and effective alternative.Diamorphine is the strong opioid of choice because of itssolubility and is delivered through an infusion device to avoidrepeated injections every four hours. It can be mixed withother “essential” drugs in the syringe driver. Oxycodone andalfentanil can be infused subcutaneously in cases of genuinemorphine intolerance. Rectal administration is another Oral oxycodone mg/24 hoursalternative, but the need for suppositories every four hours in Divide by 2the case of morphine limits its usefulness. Oxycodonesuppositories (repeated every eight hours) may be more Oral morphine mg/24 hours = Rectal morphine mg/24 hourspracticable. Divide by 3 Longer acting opioid preparations (transdermal fentanyland sustained release opioids) should not be started in a Subcutaneous diamorphine Transdermal fentanylpatient close to death; there is a variable delay in reaching x mg/24 hours = x µg/houreffective levels, and, as speedy dose titration is difficult, theyare unsuitable for situations where a rapid effect is required, Divide by 6 Divide by 5such as uncontrolled pain. If a patient is already prescribed Breakthrough doses of subcutaneous diamorphine mgfentanyl patches these should be continued as baselineanalgesia; if pain escalates additional quick acting analgesia(immediate release morphine or diamorphine) should A guide to equivalent doses and appropriate breakthrough doses in opioid analgesicsbe titrated against the pain with appropriatebreakthrough doses. Not all pains are best dealt with by opioids. For example, anon-steroidal anti-inflammatory drug may help in bone pain,while muscle spasm may be eased by diazepam. It is alsoimportant to remember all the non-cancer pains, new and old,that may be present. Non-drug measures for pain Type of pain MeasureBreathlessness Dry mouth Mouth careThe scope for correcting “reversible” causes of breathlessness Pressure sore Change of positionbecomes limited. A notable exception is cardiac failure, for Comfort dressingwhich diuresis may be effective. In most cases the priority is to Local anaesthetic geladdress the symptom of breathlessness and the fear and anxiety Appropriate mattressthat may accompany it. Distended bladder Catheterisation Loaded rectum Rectal evacuation General supportive measures should be considered in allcases. Face masks may be uncomfortable or intrusive at thistime, but oxygen therapy may help some patients (even inthe absence of hypoxia) who are breathless at rest.Nebulised 0.9% saline is useful if a patient has a drycough or sticky secretions but should be avoided ifbronchospasm is present. Management of breathlessness Opioids and benzodiazepines can be helpful and should be G Reverse what is reversibleinitiated at low doses. Immediate release morphine can be G General supportive measures—explanation, position, breathing exercises, fan or cool airflow, relaxation techniquestitrated to effect in the same way as for pain. If a patient is G Oxygen therapyusing morphine for pain control then a dose slightly higher G Opioidthan the appropriate breakthrough dose (oral or parenteral) is G Benzodiazepineusually required for treating acute breathlessness. The choice G Hyoscineof anxiolytic is often determined by what is the most suitable G Nebulised saline (if there is no bronchospasm and the patient isroute of administration, but the speed and duration of action able to expectorate)are also important. 45
  • ABC of palliative care Noisy respiration may be helped by repositioning the Causes of restlessness and confusionpatient and, if substantial secretions are present, use ofhyoscine hydrobromide (0.4–0.6 mg subcutaneous bolus or up G Drugs—such as opioids, corticosteroids, neuroleptics, alcohol (intoxication and withdrawal)to 2.4 mg/24 hours via infusion device). Hyoscine G Physical—unrelieved pain, distended bladder or bowel,butylbromide (20 mg subcutaneous bolus; up to 120 mg/24 immobility or exhaustion, cerebral lesions, infection,hrs) and glycopyrronium (0.4 mg subcutaneous bolus; up to haematological abnormalities, major organ failure1.2 mg/24 hrs) are non-sedating alternatives. Occasionally, G Metabolic upset—urea, calcium, sodium, glucose, hypoxiagentle suction may be required. End stage stridor is managed G Anxiety and distresswith opioids and anxiolytics, as it is usually too late forcorticosteroids.Restlessness and confusionThese may be distinct entities or they may overlap. A problemsolving approach is essential. The threshold for discomfort and Management of restlessness and confusiondisorientation is often lowered in cachectic or anxious patients. G Treat the acute state and deal with the causeAttention to a patient’s surroundings is therefore important—a G General supportive measures—light, reassurance, company G Choice of drug treatment relates to likely causestable, comfortable, and safe environment should be fostered;soft light, quiet, explanation, and familiar faces are reassuring. Drugs G Haloperidol The key to treatment lies in calming the acute state while Indications—Drug toxicity, altered sensorium, metabolic upsetdealing with the cause, if it is apparent and appropriate. A Dose—Oral drug 1.5–3 mg, repeat after one hour and review;notable example is the mental clouding, hallucinations, subcutaneous bolus 2.5–10 mg; subcutaneous infusion 5–30 mgconfusion, and restlessness associated with opioid toxicity, over 24 hours G Midazolamwhich can be eased with haloperidol while the opioid dose isreviewed. In general, choice of drug treatment depends on the Indications—Anxiety and distress, risk of seizure Dose—Subcutaneous bolus 2.5–10 mg; subcutaneous infusionlikely cause. Doses are titrated up or down to achieve the 5–100 mg over 24 hoursdesired effect, and the situation should be reviewed regularly G Levomepromazineand often until the acute episode settles. Highly agitated Indications—Need for alternative or additional sedationpatients may need a large dose, and continuous infusion may Dose—Subcutaneous bolus 25 mg; subcutaneous infusion up tobe needed. Rectally administered drugs are possible 250 mg over 24 hours (lowers seizure threshold, use with care) G For altered sensorium plus anxiety, combine haloperidol andalternatives. Explanation and support for the relatives and midazolamcarers are paramount at this time. G Avoid “slippery slope” of inappropriate sedation in patient who If a patient is experiencing distressing twitching or jerks needs to talk; so called “terminal agitation” can result from thethen major organ failure and metabolic disorders are possible, inappropriate use of drugsbut opioid toxicity, drugs that lower seizure threshold, andwithdrawal of anticonvulsants should be considered. A review ofmedication and treatment with a benzodiazepine oranticonvulsant (such as clonazepam orally, diazepam rectally, ormidazolam subcutaneously) is indicated. Anxiety or distress thatdoes not respond to general supportive measures may behelped by diazepam or midazolam, but it should always be Causes and treatment of nausea and vomitingremembered that a patient may be suffering from emotional orspiritual anguish that cannot be relieved by drugs. Site of effect Treatment Drugs or biochemical upsetNausea and vomiting Chemoreceptor trigger zone HaloperidolIf antiemetics have been needed within the previous 24 hours (area postrema) via dopaminethen continuation is advisable. Nausea and vomiting may rarely receptorsoccur as a new symptom at this time ( 10% of cases), and Raised intracranial pressuretreatment of the likely cause is preferred if this is practical in the Vomiting centre via histamine Cyclizine receptorsclinical situation, otherwise an appropriate antiemetic should beselected. If the aetiology is unclear then choose a centrally acting Multifactorial or uncertain aetiology Various Levomepromazineor broad spectrum antiemetic in the first instance. Gastrointestinal stasis Occasionally, more than one antiemetic is required if resistant Gastrokinetic Metoclopramidevomiting of a multifactorial cause exists. Subcutaneous Bowel obstructionadministration of antiemetics is preferable, but suppositories (such Vomiting centre via vagus nerve Cyclizine (or levomepromazine)as prochlorperazine, cyclizine, or domperidone) may be useful if Gastrointestinal secretions Octreotide (or hyoscine)subcutaneous infusion is not possible. Antiemetic treatment that butylbromidehas been initiated for bowel obstruction should be continued.Emergency situationsAppropriate and timely action has an important immediateeffect on patients and families. It can also influencebereavement and future coping mechanisms of both lay andprofessional carers. Emergencies can sometimes be anticipated:previous haemoptysis may predict haemorrhage, bone46
  • The last 48 hoursmetastases predict pathological fracture, enlarging upper Emergenciesairway tumour predicts stridor, and previous hypercalcaemiapredict confusion. G Stridor G Pain G Seizure G Confusion Some emergencies may be preventable. For example, a G Haemorrhagepatient with a brain tumour who can no longer takecorticosteroids with or without an anticonvulsant may have aseizure unless anticonvulsant treatment is maintained:subcutaneous infusion of midazolam (starting at 30 mg/24hours) and rectally administered diazepam (10 mg) may be thestrategy required. Phenobarbitone may be useful in refractorycases. Most emergencies in the last 48 hours, however, areirreversible, and treatment should be aimed at the urgent reliefof distress and concomitant symptoms. Drugs should be madeavailable for immediate administration by nursing staff withoutfurther consultation with a doctor. Directions regarding useshould be written clearly in unambiguous language. Usefuldrugs are injections of midazolam (5–10 mg if the patient hasno previous exposure to benzodiazepine, otherwise titrate asappropriate) and diamorphine (5–10 mg if no previousexposure to opioid, otherwise a sixth to a third of the 24 hourdose). Haemorrhage is distressing and unforgettable for bothpatients and carers. Haemoptysis, haematemesis, and erosion ofa major artery such as the carotid are visually traumatic. Theprompt use of drugs, dark coloured towels to make the view Patient with ulcerated neck tumour at risk of erosion of the carotid arteryless distressing (green surgical towels in hospital), and warmth and massive bleedwill aid comfort. In these situations death may occur quickly. Asupportive presence is helpful, and explanations to patientsand their carers of what is being done will help to minimisedistress in a crisis. Factors that can make bereavement more difficult G Patient—youngSupport G Illness—short, protracted, disfiguring, distressing G Death—sudden, traumatic (such as haemorrhage)Support means recognising and addressing the physical and G Relationship—ambivalent, hostile, dependentemotional issues that may face patients, families, and carers G Main carer—young, other dependants, physical or mental illness,during this time. Patients and carers value honesty, listening, concurrent crises, little or no supportavailability, and assurance that symptom control will continue.Fears or religious concerns should be acknowledged andaddressed appropriately, and respect for cultural differencesshould be assured. Explain what is happening, what is likely to Further readinghappen, the drugs being used, the support available, and how G Doyle D, Hanks G, Cherney NI, Calman K, eds. Oxford textbook ofthe family can help with care. palliative medicine. 3rd ed. Oxford: Oxford University Press, 2002. G Ellershaw J, Wilkinson S, eds. Care of the dying—a pathway to Lack of practical support is one of the most common excellence. Oxford: Oxford University Press, 2003.reasons for admission to hospital or hospice at this time, and, G Twycross RG, Wilcock A, Charlesworth S, Dickman A. Palliativetherefore, consideration should be given to extra help—such as care formulary. 2nd ed. Abingdon, Oxon: Radcliffe Medical Press,Marie Curie nurses (organised through the district nursing 2002.service)—to give carers rest and support. An assessment of therisk of bereavement allows care to be planned for the familyafter the patient’s death. Professional carers may also needsupport, particularly if the last 48 hours have been difficult, and The table entitled “Identifying when death seems imminent” is reproducedthis requires an open line of communication. with permission of Dr John Ellershaw. 47
  • 12 Palliative care for childrenAnn GoldmanThe death of a child has long been acknowledged as one of the Numbers of children with life limiting illnessgreatest tragedies that can happen to a family, and care forseriously ill children and their families is central to paediatrics. Annual mortality from life limiting illnesses G 1.5–1.9 per 10 000 children aged 1–19 yearsThe needs for palliative care for children with life limiting G Prevalence of life limiting illnessesillnesses and their families are now formally recognised within G 12 per 10 000 children aged 0–19 yearspaediatrics in the UK. The most suitable approaches to care, In a health district of 250 000 people, with a child population ofhowever, are still evolving, and the training and provision of the about 50 000 in one year:necessary multidisciplinary workforce is being developed to G Eight children are likely to die from a life limiting illness–threeprovide a fully comprehensive national service in the UK. from cancer, two from heart disease, three others In the US excellent research has provided us with a better G 60–85 children are likely to have a life limiting illness, about halfunderstanding of management of symptoms, especially pain. of whom will need active palliative care at any timeAspects of care vary greatly between countries but remain basedwith the attending physician. Groups of life limiting disease in childrenWhich children need care? Group Examples Diseases for which curative treatment CancerFortunately, deaths in childhood that can be anticipated and may be feasible but may failfor which palliative care can be planned are rare. A report by Diseases in which premature death is Cystic fibrosisACT (Association for Children with Life Threatening or inevitable but where intensive treatment HIV/AIDSTerminal Conditions and their Families) and the Royal College may prolong good quality lifeof Paediatrics and Child Health has recently been updated and Progressive diseases for which treatment Batten diseaseoffers the currently available information about epidemiology. is exclusively palliative and may extend MucopolysaccharidosesIt suggests that the number of children who would benefit from over many yearspalliative care is higher than was previously thought. Irreversible but non-progressive Severe cerebral palsy Palliative care for children is offered for a wide range of life conditions leading to vulnerability andlimiting conditions, which differ from adult diseases. Many of health complications likely to cause premature deaththese are rare and familial. The diagnosis influences the type ofcare that a child and family will need, and four broad groupshave been identified. Palliative care may be needed from infancy and for manyyears for some children, while others may not need it until theyare older and only for a short time. Also the transition fromaggressive treatments aimed at curing the condition orprolonging good quality life to palliative care may not be clear.Both approaches may be needed in conjunction, eachbecoming dominant at different times.Aspects of care in childrenChild developmentChildhood is a time of continuing physical, emotional, andcognitive development. This influences all aspects of the care ofchildren, from pharmacodynamics and pharmacokinetics ofdrugs to the communication skills of the children and theirunderstanding of their disease and death.Care at homeMost children with a life limiting disease are cared for at home. Diagnosis DeathParents are at the same time part of the team caring for thesick child and part of the family, needing care themselves. As Palliative care (shaded) and treatments aiming to cure or prolong life (not shaded) vary in different situations and with timetheir child’s primary carers, they must be included fully in thecare team—provided with information, able to negotiatetreatment plans, taught appropriate skills, and assured thatadvice and support is accessible 24 hours a day.Assessing symptomsAssessing symptoms is an essential step in developing a plan of Methods of assessing pain in childrenmanagement. Often a picture must be built up through G Body charts G Diariesdiscussion with the child, if possible, combined with careful G Faces scales G Colour toolsobservations by parents and staff. It is also important to G Numeric scales G Visual analogue scales48
  • Palliative care for childrenconsider the contribution of psychological and social factors for Paediatric pain profilea child and family and to inquire about their coping strategies,relevant past experiences, and their levels of anxiety and Items used by families and professionals in assessing pain in children with severe developmental delay. The child’s own baselineemotional distress. There are formal assessment tools for levels are scored and compared with changes occurring with painassessing severity of pain in children that are appropriate for G Was cheerfuldifferent ages and developmental levels, but assessment is more G Was sociable or responsivedifficult for other symptoms and for preverbal and G Appeared withdrawn or depressed G Cried/moaned/groaned/screamed or whimpereddevelopmentally delayed children. G Was hard to console or comfort G Self harmed—for example, bit self or banged headManaging symptoms G Was reluctant to eat/difficult to feedIn all situations the management plan should consider both G Had disturbed sleeppharmacological and psychological approaches along with G Grimaced/screwed up face/screwed up eyespractical help. G Frowned/had furrowed brow/looked worried Children often find it difficult to take large amounts of drugs, G Looked frightened (with eyes wide open)and complex regimens may not be possible. Doses should be G Ground teeth or made mouthing movementscalculated according to a child’s weight. Oral drugs should be G Was restless/agitated or distressed G Tensed/stiffened or spasmedused if possible, and children should be offered the choice G Flexed inwards or drew leg up towards chestbetween tablets, whole or crushed, and liquids. Long acting G Tended to touch or rub particular areastransdermal and buccal preparations can be helpful, reducing the G Resisted being movednumber of tablets needed and simplifying care at home. Some G Pulled away or flinched when touchedchildren find rectal drugs acceptable; they can be particularly G Twisted and turned/tossed head/writhed or arched backuseful in the last few days of life. Otherwise, a subcutaneous G Had involuntary or stereotypical movements/was jumpy/startledinfusion can be established or, if one is in situ, a central or had seizuresintravenous line can be used. Parents are usually willing and ableto learn to refill and load syringes and even to resite needles. Many of the drug doses and routes used in palliative care are not licensed for children,Specific problems and this places an additional burden ofPain responsibility with the clinician prescribingThe myths perpetuating the undertreatment of pain in children themhave now been rejected. Most doctors, however, lack experiencein using strong opioids in children, which often results inexcessive caution. Also the difficulties of assessing pain,especially in preverbal and developmentally delayed children,can still result in lack of recognition and undertreatment ofpain. After identifying the source of pain in a child appropriateanalgesics and non-pharmacological approaches to painmanagement can be chosen. The WHO’s three step ladder ofanalgesia is equally relevant for children, with paracetamol,codeine, and morphine forming the standard steps. 0 1 2 No hurt Hurts little bit Hurts little more Opioids—Laxatives need to be prescribed regularly withopioids, but children rarely need antiemetics. With opioids,itching in the first few days is quite common and usuallyresponds to antihistamines if necessary. Many children aresleepy initially, and parents should be warned of this lest theyfear that their child’s disease has suddenly progressed.Respiratory depression with strong opioids used in standard 3 4 5doses is not a problem in children over 1 year, but in younger Hurts even more Hurts whole lot Hurts worstchildren starting doses should be reduced. The Wong-Baker faces scale (adapted from Wong DL et al., eds. Whaley and Adjuvant analgesics—Non-steroidal anti-inflammatory drugs Wong’s essentials of pediatric nursing. 5th ed. St Louis, MO: Mosby, 2001)are often helpful for musculoskeletal pain in children with non-malignant disease. Caution is needed in children with cancerand infiltration of the bone marrow because of an increasedrisk of bleeding. Neuropathic pain may be helped byantiepileptic and antidepressant drugs. Pain from musclespasms can be a major problem for children withneurodegenerative diseases and may be helped bybenzodiazepines and baclofen. Children and pain Headaches from raised intracranial pressure associated with G Children’s nervous systems do perceive painbrain tumours are best managed with analgesic drugs used as G Children do experience pain G Children do remember paindescribed in the WHO guidelines. Although corticosteroids are G Children are not more easily addicted to opioidsoften helpful initially, the symptoms soon recur and increasing G There is no correct amount of pain or analgesiadoses are needed. The considerable side effects of for a given injurycorticosteroids in children—rapid weight gain, changed bodyimage, and mood swings—usually outweigh the benefits.Headaches from leukaemic deposits in the central nervous 49
  • ABC of palliative caresystem respond well to intrathecal methotrexate. Analgesic doses in childrenFeeding Paracetamol G Oral dose 15 mg/kg every four to six hoursBeing unable to nourish their child causes parents great G Rectal dose 20 mg/kg every six hoursdistress and often makes them feel that they are failing as G Maximum dose 90 mg/kg/24 hours; 60 mg/kg/24 hours inparents. Sucking and eating are part of children’s development neonatesand provide comfort, pleasure, and stimulation. These aspects Dihydrocodeineshould be considered alongside a child’s medical and practical G Age 4 years 500 g/kg orally every four to six hoursproblems with eating. Children with neurodegenerative G Age 4–12 years 500–1000 g/kg orally every four to six hoursdisorders or brain tumours are particularly affected. In general, Morphinenutritional goals aimed at restoring health are secondary to Immediate release preparationscomfort and enjoyment, although assisted feeding, via a G Age 1 year 150 g/kg orally every four hoursnasogastric tube or gastrostomy, may be appropriate for those G Age 1–12 years 200–400 g/kg orally every four hours G Age 12 years 10–15 mg orally every four hourswith slowly progressive disease. G Titrate according to analgesic effect and provide laxativesNausea and vomiting 12 hourly preparations G Age 1 year 500 g/kg orally every 12 hoursThese are common problems. Antiemetics can be selected G Age 1–12 years 1 mg/kg orally every 12 hoursaccording to their site of action and the presumed cause of the G Age 12 years 30 mg orally every 12 hoursnausea (see chapter 7). In resistant cases combining a number G These are guidelines to starting doses, but many patients mayof drugs that act in different ways can be helpful. Vomiting start at higher doses after titration with immediate releasefrom raised intracranial pressure should be managed with morphine preparations every four hourscyclizine in the first instance. Diamorphine G A third of total 24 hour doses of oral morphineNeurological problems G Subcutaneous 24 hour infusionA grand mal fit in a child is extremely frightening for parents,and they should always be warned if it is a possibility andadvised about management. A supply of buccal midazolam or Support that every child and family should expectrectal diazepam at home is valuable for managing seizures.Subcutaneous midazolam can enable parents to keep a child G To receive a flexible service according to a care plan based on individual assessment of needs, with reviews at appropriatewith severe repeated seizures at home. Maintenance intervalsantiepileptic medications for children with neurodegenerative G To have a named key worker to coordinate their care anddisease may need adjusting as the illness progresses. provide access to appropriate professionals Agitation and anxiety may reflect a child’s need to express G To be included in the caseload of a paediatrician in their homehis or her fears and distress. Drugs such as benzodiazepines, area and have access to local clinicians, nurses, and therapistsmethotrimeprazine, and haloperidol may help to provide relief, skilled in children’s palliative care and knowledgeable about services provided by agencies outside the NHSespecially in the final stages of life. G To be in the care of an identified lead consultant paediatrician expert in the individual child’s conditionSupport for the family G To be supported in day to day management of child’s physical and emotional symptoms and to have access to 24 hour care inThe needs of children and young people with a life threatening the terminal stage G To receive help in meeting the needs of parents and siblings,illness and their families are summarised in the report by ACT both during child’s illness and during death and bereavementand the Royal College of Paediatrics and Child Health. Families G To be offered flexible respite and short term respite breaksneed support from the time of diagnosis and throughout including nursing care and symptom management both at hometreatment, as well as when the disease is far advanced. or in a children’s hospiceProfessionals must be flexible in their efforts to help. Each G To be provided with drugs, oxygen, specialised feeds, and allfamily and individual within a family is unique, with different disposable items such as feeding tubes, suction catheters, and stoma products through a single sourcestrengths and coping skills. The needs of siblings and G To be provided with adaptations to housing and specialistgrandparents should be included. The family of a child with an equipment for use at home and school in an efficient and timelyinherited condition have additional difficulties. They may have manner without recourse to several agenciesfeelings of guilt and blame, and they will need genetic G To be helped in procuring benefits, grants, and other financialcounselling and information about prenatal diagnosis in the assistancefuture. When an illness does not present until some years afterbirth, several children in the same family may be affected. Families who maintain open communication cope mosteffectively, but this is not everyone’s pattern. Children almostalways know more than their parents think, and parents shouldbe encouraged to be as honest as they can. Play material,books, and other resources can be supplied to help withcommunication, and parents can be helped to recognise theirchildren’s non-verbal cues. Sick children need the opportunity to maintain theirinterests and to have short term goals for as long as possible.Play and education is an essential part of this, as they representthe normal pattern and help children to continuerelationships with their peers. Providing information and Play and education enable children to pursue short term goalssupport to teachers facilitates this. (photos.com)50
  • Palliative care for childrenBereavement Communicating with children about deathGrief after the death of a child is described as the most painful Factors to consider G Child’s level of understanding; of illness; of death; of ownand enduring. Parents suffer multiple losses. Siblings suffer tooand may have difficulty adjusting; they often feel isolated and situation G Child’s experienceneglected, as their parents can spare little energy or emotion G Family’s communication patternfor them. Methods of communication Helping the bereaved family involves: G Verbal G Art G Play G School workG Support and assessment through the tasks of normal G Drama G Stories mourning—most families do not need specialist counselling but benefit from general support and reassurance, supplied if possible by those who have known the family through illnessG Information—such as support groups and the Child Death Helpline. Many parents value the opportunity of talking with The loss of a child others who have also experienced the death of a child G Multiple losses for parents:G Referral for specialist bereavement counselling if needed The child who has died Their dreams and hopesG Gradual withdrawal of contact. Their own immortality Their role as parents G Stress on marriageFurther reading G Change in family structureG ACT, Royal College of Paediatrics and Child Health. A guide to the G Grief of siblings and grandparents development of children’s palliative care services. 2nd ed. Bristol: ACT, 2003 (Tel 0117 922 1556, Fax 0117 930 4707).G ACT, Royal College of Paediatrics and Child Health. Palliative care for young people aged 13–14. Bristol: ACT, 2003.G Carson D, ed. Medicines for children. London: Royal College of Paediatrics and Child Health, 2003.G Hunt A, Goldman A, Devine T, Phillips M, Fen-GBR-14 Study Group. Transdermal fentanyl for pain relief in a paediatric palliative care population. Palliat Med 2001;15:405–12.G Hunt A, Goldman A, Seers K, Masstroyannopolou K, Crighton N, Moffat V. Clinical validation of the paediatric pain profile, a behavioural rating scale to assess pain in children with severe neurological and learning impairment. Dev Child Neurol 2004;46:9–18.G Scott RC, Besag FM, Neville BG. Buccal midazolam and rectal diazepam for treatment of prolonged seizures in childhood and adolescence: a randomised trial. Lancet 1999;353:623–6.G Wong DC, Hockenberry-Eaton M, Wilson D, Winkelstein ML, Schwartz P. Wong’s essentials of pediatric nursing. 6th ed. St Louis, MO: Mosby, 2001:1301. Publications from the Association for Children with Life Threatening or Terminal Conditions and their Families can be obtained from ACT, Orchard House, Orchard Lane, Bristol BS1 5DT (tel 0117 922 1556; fax 0117 930 4707) or online at www.act.org.uk 51
  • 13 CommunicationDavid JeffreyWhy is good communicationnecessary?Effective communication is essential in all clinical care. Inpalliative care, professionals need good communication skills tobe aware of the patient’s unspoken concerns. They also need toexchange information between members of the multidisciplinaryteam. Patients and their carers consistently identify a need forgood communication with professionals, poor communicationbeing the most common reason for complaints about doctors.Why is communication difficult?If communication between healthcare professionals and Good communication between doctor and patient is vital (photos.com)patients is to be improved, the reasons why communication inpalliative care may be difficult must be understood. Death remains a taboo subject and nowadays is unfamiliar Good communication is necessary to:to the public as most people die in hospital. Patients may havemany concerns; it may not be simply the prospect of premature G Provide patients with information about their diagnosis, prognosis, and treatment choices to plan realistically for thedeath but the likelihood of an undignified painful process of futuredying that is frightening. Doctors may feel a sense of failure as G Make patients aware of the services that might be available forthere is a tendency to blame the bearer of the bad news. them and their carersFurthermore, some professionals feel unprepared to deal with G Clarify the patient’s prioritiesthe patient’s emotional reactions or to admit to uncertainty. G Enable a trusting relationship between the healthcare professional, patient, and family G Reduce uncertainty and prevent unrealistic expectations whileChallenges in communication G maintaining realistic hope Achieve informed consentThe time of diagnosis, treatment, and recurrence of disease G Resolve ethical dilemmas G Promote effective multidisciplinary teamworkmay be associated with considerable social and psychologicalmorbidity, much of which remains unrecognised by healthcareprofessionals. It is not surprising that collusion and conspiraciesof silence can develop when everyone is trying to protect the Concerns of patientspatient. G Will the cancer come back? Fear of recurrence G How long have I got? Fear for the future G Why me? The search for meaningBarriers to good communication G G Am I still lovable? Body image and sexual concerns What can I do? Fear of loss of controlAn understanding of the factors that prevent good G Why won’t they talk to me? Need for honestycommunication may lead to initiatives to improve it. G Will I be a burden to others? Fear of becoming dependent G Where is the doctor? Need for medical supportLack of timeLack of time is commonly used as a justification for inadequatecommunication as most clinicians have to work with unrealisticcaseloads. Patients value extra time spent with them and canbecome more involved in decision making. Spending moretime may be more efficient because it takes longer to resolvemisunderstandings than to avoid them in the first instance.Lack of privacyMaintaining confidentiality is one way of respecting a person’sautonomy and forms an essential part of a trusting relationship.In practice absolute confidentiality is hard to achieve andbreaches occur in hospital and community settings. The presence or absence of relatives can create problems ofconfidentiality; professionals should not assume that the patientwants the relatives to be informed. If information is judged tobe highly sensitive, the patient’s permission should be sought toshare information with members of the multidisciplinary teamon a “need to know basis.”52
  • CommunicationUncertainty Communication challenges in palliative careCommunication is particularly difficult for patients, relatives,and professionals at a time of uncertainty. Patients need to have G Breaking bad news G Coping with emotional responsesa sense of control over their life plans. Restoring a sense of G Stopping or withholding active treatmentscontrol may enable patients to feel “safe” even in a life G Avoiding collusion and promoting openness among patients,threatening situation. Doctors should feel able to acknowledge relatives, and professionalsuncertainty, be prepared to discuss patients’ fears of death and G Discussing “Do not attempt resuscitation” ordersdying, and assist them in setting goals for a limited future. G Responding appropriately to a request for euthanasia G Discussing death and dying G Talking to childrenEmbarrassment G Communicating with colleaguesA general reluctance in society to discuss death and dyingcombined with a desire not to cause patients further distressmakes communication difficult. Listening is a key skill. Theprofessional needs to convey to the patient that he or she isapproachable and empathises with their suffering. Patients donot expect professionals to have answers to existential questionsbut they do need to have contact with another human beingwho is prepared to be with them and to listen to their fears.CollusionCollusion may arise when relatives feel that the patient wouldnot be able to cope with bad news. This form of paternalism,which may spring from good motives, ultimately threatenspatients’ autonomy. It is a serious breach of confidentiality todiscuss details of a case with relatives before the patient has hadan opportunity to absorb the information. If collusion existsthen time is needed for the healthcare professional to explorethe relative’s motives and feelings in a supportive way. Relativesalso need to know that often the patient is fully aware of thegravity of the situation and is trying to protect them. Patients may give mixed messages—reading a holiday brochure does not necessarily mean that the patient is unaware of the prognosisMaintaining hopeWhen patients become upset on hearing that their disease is nolonger curable, their distress should be acknowledged. Giventime, the patient can be encouraged to set goals other thancure—for example, relief of pain. Here healthcareprofessionals need to be alert for signs of clinical depression.AngerThe doctor needs to listen to the patient’s story, eliciting alltheir concerns. Anger should be acknowledged and notdismissed as a part of a coping process. It is therapeutic for thepatient to be allowed to vent their anger without interruption.Professionals should feel free to empathise and to expressfeelings of regret without necessarily accepting blame.DenialInitially, it is common for a patient to deny the bad news andthis should be expected because it is an effective copingstrategy. In dealing with persisting denial, it is important to givepatients an opportunity to talk as they may wish furtherinformation at a later stage. Although most patients do want tobe fully informed, it is important to respect the view of thesmall minority who don’t want further information about theirdiagnosis or prognosis. Patients in denial are frightened; theyneed patience and sensitive communication.Not in front of the childrenChildren often demand information in a direct way. Olderchildren have the same information needs as adults but requireit in a form that is easily understood. Young children may needto assimilate information through the use of play, painting,videos, and books. Children need to tell their story andhealthcare professionals have to be imaginative and uninhibited Information given to childrenin helping them to articulate their distress. The natural feelings needs to be presented in anof protection should not generate situations of collusion. appropriate way (photos.com) 53
  • ABC of palliative careDistancing tacticsFaced with all these challenges, it is not surprising thathealthcare professionals commonly adopt distancing tactics inan effort to avoid some of the stress of communicating withpatients and their families. There is a fine balance betweenbecoming too emotionally involved with the patient’s situationand adopting overt distancing tactics such as avoiding eyecontact or standing at the end of the bed. Inappropriate reassurance or cheerfulness can also inhibit apatient from raising concerns. Generally patients will want totest whether this is a doctor or nurse they can trust to discusstheir fears. If their psychological cues are ignored patientsquickly give up trying once they sense that the professional isnot comfortable to discuss their concerns in this area. Distancing tactics, such as avoiding eye contact or standing at the end of aInterprofessional communication patient’s bed, can prevent a patient discussing concerns. Reproduced with permission from Will and Deni McIntyre/Science Photo LibraryIn professional training there is an emphasis on improvingcommunication between professionals and patients, butcommunication between the healthcare professionals is oftenpoor; this wastes time, threatens care of the patients, and is asource of staff stress.Problems in interprofessional communicationReferral—Specialist palliative care services are often involved too The use of medical terms can distance professionals yetlate because of a desire to protect patients from the anticipated allow them to feel that they have been truthful. For“distress” of referral to specialist palliative care. example, words such as “response,” “progression,” and Discharge planning—The provision of carefully planned care “positive” may have differing connotations in the medicalin the community requires effective communication across the and public domainshospital community interface. Terminal care and bereavement support—Interprofessionalcommunication may break down after the death of the patient.In one study, when deaths occurred in hospital the generalpractitioner was informed within 24 hours in only 16% of cases. Organisational problems—Communication problems are acommon cause of preventable disability or death in hospitalpatients. Research of communication systems is driven largely by Specific problems in interprofessionaltechnology rather than by an understanding of clinical needs. communication Multidisciplinary team working—The diversity that gives a G Referralmultidisciplinary team its potential for effectiveness can also G Discharge planningmake that team vulnerable if there is insufficient G Terminal care and bereavement supportcommunication. For example, general practitioners may lose G Organisational problemstouch with patients who are being followed up in hospital G Multidisciplinary team workingclinics and feel marginalised in their care. G Communication and stress Communication and stress—Unsatisfactory communicationlies at the heart of many of the stresses experienced byprofessionals working in palliative care. Such care is oftenuncertain; decisions have to be made with inadequateinformation or when advice from colleagues is conflicting. Kaye’s ten steps to breaking bad newsMany of the stresses reported by professionals who are caring G Preparationfor the dying arise from difficulties with colleagues and G What does the patient know?institutional hierarchies. G Is more information wanted? G Give a warning G Allow denialImproving communication G Explain G Listen to concernsBreaking bad news G Encourage feelingsBreaking bad news is a process, not a single event. Kaye’s steps G Summary and planprovide a good model that can be applied to many situations of G Offer availabilityuncertainty or difficult communication.Appropriate referral to specialist palliative careThe general practitioner is in an ideal position both to initiatethe multidisciplinary team approach and to share knowledgeand insights with other members of the team.54
  • CommunicationAssessment Honest communication is central to effective palliative careGeneral practitioners need to encourage multiprofessional and involves more than giving information about theprimary care team working as well as enlisting the skills and illness. It is concerned also with support of the patient,knowledge of the specialist palliative care team. Role blurring is family, and colleagues. Information must be accurate butan inevitable feature of interprofessional teamwork, which can the manner of communication is fundamental to goodresult in either competitive or collaborative relationships. practiceContinuity of careIt is in the patient’s best interest for one doctor, usually ageneral practitioner, to be fully informed and responsible forcontinuity of the patient’s medical care. The nursing care cansimilarly be best coordinated by the district nurse, although onoccasions it may be appropriate for another member of theteam to be designated the key worker.Record keepingDocumentation is an important part of communication; thenotes from the district nurses, records held by patients, andintegrated care pathways are documents that can remain withthe patient and facilitate interprofessional communication.Discharge planningGeneral practitioners and district nurses are the keyprofessionals responsible for medical and nursing care athome; they should be the first professionals consulted whenplanning a discharge from hospital.Terminal care and bereavement supportThere needs to be an efficient means of notifying the generalpractitioner and the primary care team of the patient’s death.The team needs to identify an appropriate key worker who willbe responsible for offering the family bereavement support.Communication, conflict, and stressMutual respect and trust between team members leads to their Communication between patient and professional is tailored to the individualcorporate and individual skills being used in an optimal way. It situationis never helpful to be critical of colleagues in front of patientsor relatives; such behaviour serves only to reduce the patient’sconfidence in the team. Clinical supervision, mentoring, andpeer appraisal can be methods of supporting and encouragingcolleagues.Communication facilitiesTeam members need instruction in appropriate use ofcommunication facilities. Voicemail, email, and mobilecommunication can improve support, but healthcare Further readingprofessionals need to think about the consequences of G Buckman R. Communication in palliative care: a practical guide.interrupting their colleagues and to reflect on the use of In: Doyle D, Hanks GWC, Macdonald N, eds. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993:47–61.alternative approaches. G Jeffrey D. Cancer from cure to care. Manchester: Hochland & Hochland, 2000.EducationA major objective of interprofessional education is fostering ofmutual respect and an understanding of each other’s roles. The cartoons in this chapter are courtesy of Malcolm Willett. 55
  • 14 The carersJulia Addington-Hall, Amanda RamirezMost people need some care in their last months of life. Cancerpatients usually experience a relatively short period ofaccelerating physical deterioration, while people with chronicprogressive conditions such as heart failure deteriorate over alonger time frame, with unpredictable episodes of furtherdecline. Hospitals are important providers of end of life care:more than half of all deaths take place in hospital, and 90% ofall people who die have had hospital care in the last year of life.One in five deaths from causes other than cancer occurs in carehomes, and many people live in these homes but die in hospital.Healthcare professionals working in institutions therefore playan important part in the care of people at the end of life. But up to a quarter of deaths take place at home, and mostpeople spend most of their last year of life there. Healthcareprofessionals have an important role here too, but supportfrom family and friends makes all the difference to the qualityof home care and to the likelihood of hospital care beingavoided. These supporters are usually referred to as “informalcarers,” although they themselves often do not see themselvesas “carers,” instead seeing the care they provide as a normal “The death of Theodore Gericault (1791–1824), with his friends Colonelpart of familial relationships. Bro de Comeres and the painter” by Ary Scheffer (1795–1858). Until the start of the 20th century, most people died at home while being cared for by family and friendsSupport from family and friendsThree quarters of patients receive care at home from informalcarers in the last months of life. Patients without cancer are lesslikely than those with cancer to have someone to care for them, Informal carersreflecting their older average age at death. For people with G More patients want to die at home than currently do socancer, care may be needed for weeks or months; for G Informal carers are vital to the support of patients at homeconditions other than cancer it may be needed for years. G Many informal carers are elderly and have their own health Informal carers often have high levels of anxiety and needsdepression. Lack of sleep and fatigue are common problems, and G A third of caregivers provide all the informal care themselvesthe carer’s own health may suffer. Psychological morbidity while G Carers provide care without specialist knowledge and training, 24 hours a day, seven days a weekcaring may be related to subsequent poor bereavement outcomes. G Fatigue, anxiety, and depression are common among informal The degree of psychological distress is related to the carersamount of care patients need; the impact on carers’ lives; howwell the family functions under stress; the availability of socialsupport for the carer; the carer’s health status and their copingstyles. Providing support for depressed, demented, or deliriouspatients is particularly difficult. Needs of informal carers Carers are individuals and will respond in different ways to Information and education aboutcaregiving; there is no substitute for asking them directly about G The patient’s diagnosistheir experiences, fears, and needs. Not all the consequences of G Causes, importance, and management of symptomscaregiving are negative: many carers report getting pleasure G How to care for the patient G Likely prognosis and how the patient may diefrom being able to help someone they love. They—and the G Sudden changes in patient’s condition, particularly those whichpatient—will resent suggestions that the experience is wholly may signal that death is approachingnegative or, indeed, negative at all. G What services are available and how to access them (including in Fewer people die at home than would like to do so. Carers’ emergencies)views on home deaths are largely unknown. One reason for Support during the patient’s illnessadmissions is that informal caregivers are unable to continue G Practical and domesticbecause of deteriorations in their own health, fatigue and G Respitepsychological distress, patient’s increasing level of dependency, G Night sitterslack of confidence in their caring abilities, and the failure of G Psychosocial G Financialhealth and social services to deliver appropriate care. G Spiritual It is important to provide good support to informalcaregivers to protect them from adverse health consequences Bereavement careboth before and after bereavement, and to enable patients to (see later article on bereavement)stay at home for as long as they want. Health professionalsshould address carers’ needs for information, practical supportand advice, and psychosocial support.56
  • The carersInformation Failing to meet informal carers’ needsInformation about the illness, its likely course, and what toexpect as the patient deteriorates enables patients and carers to G Carers are often reluctant to disclose their needs to health professionalsmake informed decisions and reduces anxiety. It is not good Reasons for this include:practice to inform only the relatives about the patient’s disease, Not wanting to focus on their own needs while the patient is stillits management, and prognosis. Exceptional circumstances may alivearise when patients (not relatives) clearly indicate they do not Not wanting to be judged inadequate as a carerwish to discuss their illness or when patients are unable to Believing concerns and distress are inevitable and cannot beunderstand the necessary information. Informing only relatives improved Not being asked relevant questions by health professionalcan lead to mistrust and impaired communication between G Attention to carers’ needs will often benefit patientspatients and their relatives at a time when mutual support is G Some—perhaps many—dying patients admitted to hospital couldmost needed. Patients may choose to consult with their doctor remain at home if carers were given better supportalone, but joint consultations with both the patient andrelatives avoid the problems that can arise when one or otherparty is informed first. Many carers report not having receivedall the information they wanted about the patient’s illness. Sources of support to enable informal carers to look after dying patients at home in the UKPractical support and advice Symptom control—General practitioners, palliative medicineMost informal carers benefit from practical instructions on how domiciliary visits, district nurses, clinical nurse specialists such asto care for patients—for example, how to lift them safely. District Macmillan nursesand palliative care nurses have an important role here, as well as Nursing—Community nursesin providing information on and arranging financial benefits, Night sitting services—Marie Curie nurses, hospice at home services,practical support in the home, and respite and overnight care. district nursing servicesAvailability of these resources varies widely across the UK and Respite care—Hospices, community hospitals Domestic support—Social servicesother countries, which places an additional burden on carers. Information—General practitioners, district nurses, clinical nurse specialists, voluntary organisations such as BACUPPsychosocial support Psychosocial support—General practitioners, district nurses,Mild psychological distress usually responds to emotional Macmillan nurses, counsellors, specific interventions for carerssupport from frontline health workers with effective of dying patientscommunication skills. This involves listening to carers’ Aids and appliances—Occupational therapistsconcerns and fears, explaining physical and psychological Financial assistance—Social workers, benefit officerssymptoms, challenging false beliefs about death and dying, andhelping carers reframe their experiences more positively. Moresevere psychological distress may benefit from specialistpsychological assessment and treatment. Risk factors for psychiatric morbidity among palliative care professionalsHealthcare professionals G For senior professionals, young age or fewer years in post G High job stressMany different health professionals care for patients in their G Low job satisfactionlast year of life—in the community, in hospitals, and in hospices G Inadequate training in communication and management skillsand other institutions. Some health professionals devote the G Stress from other aspects of lifewhole of their working time to palliative care, while for many G Previous psychological difficulties or family history of psychiatricothers it forms only a small part of their formal workload. problemsPsychiatric morbidity and burnoutWorking in palliative care is widely believed to barrage staff withsuffering and tragedy. The stress associated with caring for dyingpeople, however, may be counterbalanced by the satisfaction ofdealing well with patients and relatives. Psychiatric morbidityamong palliative physicians and palliative care nurses is lower Strategies for improving mental health of professionalsthan among many other healthcare professionals. providing palliative care G Maintenance of a culture of palliative care despite the shiftJob stress and satisfaction within health care from service to business, including:Palliative physicians and nurses report similar sources of stress Autonomyas other healthcare professionals, with overload and its effect Good management Adequate resources, particularly with regard to workforce, so thaton home life being predominant. Poor management, resource high levels of care of patients can be maintainedlimitations, and issues around care of the patients are also G Provision of more effective training in:major sources of job stress. Palliative care nurses find Communicationdifficulties in their relationships with other healthcare Management skillsprofessionals a particular source of stress, often because their G Provision of effective clinical supervision that addresses theroles are poorly understood and sometimes poorly defined. physical, psychological, social, spiritual, and communication dimensions of care of patientsGood relationships can, however, be a source of job satisfaction. G Provision of a confidential mental health service that isDeath and dying do not seem to be a major source of job stress. independent of management and covers both personal and work Palliative physicians have significantly higher levels of job related problemssatisfaction compared with consultants working in other 57
  • ABC of palliative carespecialties, and palliative care nurses have significantly higherlevels than most other nurses. Good relationships with patients,relatives, and staff, controlling pain and other symptoms, andimproving patients’ quality of life are common sources ofsatisfaction.Improving the mental health of professional carersMaintaining and improving professional carers’ mental healthis essential for their own wellbeing and for the quality of carethat they provide for patients.Identifying mental health problemsSome workers—particularly those with less severe mental healthproblems—seek advice and care from their generalpractitioner, a mental health colleague, or a national service.Others do not refer themselves. Often they are identified bycolleagues and should be referred to a mental health specialistand to the service manager if there are concerns that care ofpatients may be jeopardised.AssessmentAssessment services may be provided either within thehealthcare professional’s institution or, to maintainconfidentiality, elsewhere by arrangement with otherinstitutions. Such external arrangements may be particularlyimportant for independent hospices. Assessments should beconducted by skilled mental health professionals and shouldinclude an assessment of risk to patients as well as the needs ofthe affected professional. Confidentiality and its limits shouldbe discussed. It can be tempting to collude in self management,but this is a disservice to the professionals, who should berelieved of the burden of providing their own care. “Grandfather’s little nurse” by James Hayllar (1829–1920)TreatmentTreatment should ideally be provided outside the institution inwhich the professional works. The cornerstone of treatment ispsychological therapy, either alone or in conjunction withpsychotropic drugs. Professionals’ preferences for types of Further readingtreatment and their interest in exploring and understanding G Faulkner A, Maguire P. Talking to cancer patients and their relatives.their problems need to be considered in the selection of the Oxford: Oxford Medical Publications, 1994.appropriate treatment(s). Psychological treatments delivered by G Graham J, Ramirez AJ, Cull A, Finlay I, Hoy A, Richards MA. Jobtrained staff are effective and include grief work, cognitive stress and satisfaction among palliative physicians. Palliat Medbehaviour therapy, and behavioural and interpersonal therapy. 1996;10:185–94. G Harding R, Higginson IJ. What is the best way to help caregiversNon-specific “counselling” and “support” are of limited benefit in cancer and palliative care? A systematic literature review ofin managing complex severe psychological problems. Many interventions and their effectiveness. Palliat Med 2003;17:63–74.with less severe problems report that counselling was helpful, G Payne S, Ellis-Hill C, eds. Chronic and terminal illness: newbut further evaluation is needed. perspectives on caring and carers. Oxford: Oxford University Press, 2001.The painting by Ary Scheffer is reproduced with permission of Peter G Thomas C, Morris SM. Informal carers in cancer contexts. Eur JWilli and the Bridgeman Art Library, and the painting by James Hayllar Cancer Care 2002;11:178–82.is reproduced with permission of the Bridgeman Art Library. G Vachon MLS. Burnout and symptoms of stress in staff working in palliative care. In: Cochinov HM, Breitbart W, eds. Handbook of psychiatry in palliative medicine. Oxford: Oxford University Press, 2000:303–19.58
  • 15 Chronic non-malignant diseaseMarie Fallon, Joanna Chambers, Francis Dunn, Raymond Voltz, Gian Borasio, Rob George, Roger WoodruffIntroductionAll patients are entitled to good palliative care, and it is anecessary part of any practitioner’s armamentarium. Generalclinicians and specialists therefore need a flexible and effectiveunderstanding of symptom control that can be applied diversely. There are three main problem issues in chronic disease:G The impact of the disease on an individual’s daily living and, conversely, the possibility of improving quality of life by attending to social and practical issuesG The uncertainty of the progression of the disease and often its punctuation with exacerbations of potentially fatal complicationsG Ways to modify pathology and manage symptoms. These three issues translate into:G Optimisation of the external environmentG Optimisation of the internal environmentG Optimisation of function and control of symptoms. Marked muscle wasting in the arms (left) combined with oedema of the legs (right) in a patient with advanced heart failure Key to the optimum way ahead for effective palliation inchronic non-malignant disease has to be effectivecommunication between the relevant specialities. Some of theknowledge we have from working in cancer care can betransferred, though it is naive to think it is just a simple transfer Causes of postural hypotension in advanced cardiac failureof knowledge. In addition, specialists such as cardiologists, and cancerneurologists, renal physicians, and respiratory physicians will Cardiac related Cancer relatedalways have a key role in the palliation of most of their patients G Diuretics G Antidepressants G ACE inhibitors, angiotensin G Adrenal insufficiency due tofor obvious reasons. receptor blockers, and other metastasis vasodilatorsAdvanced cardiac disease Common to both G Bed rest G Reduced fluid intake andAt all stages the management of cardiac disease has a G Coexistent disease vomitingsubstantial palliative component, and, unlike management of G Muscle wasting and poor G Opioidscancer, there are few opportunities for cure. This section venous tonefocuses on palliative care in cardiac failure, as this is the finalcommon pathway in most patients with advanced cardiacdisease who do not die suddenly. The challenge of effectively applying palliative care rests inthe unpredictable course in advanced heart failure, the way inwhich the healthcare system is organised, and the doctor’sunderstanding of their roles and responsibilities.PrevalenceCardiac failure affects 1–2% of the adult population, and the Clinical aspects of cardiac failure compared with cancerprevalence rises steeply with age (to more than 10% of those Similaritiesaged over 70). It is a disabling and lethal condition that also G Breathlessness, lethargy, cachexia G Nausea, anorexia, abnormal tastehas a detrimental effect on quality of life. Up to 30% of G Weight loss (loss of muscle mass countered by fluid retention)affected patients require admission to hospital in any year G Pain(120 000 admissions annually in the UK). Mortality is higher G Constipationthan in many forms of cancer, with a 60% annual mortality G Poor mobilitywith in patients with grade 4 heart failure and an overall G Insomnia, confusion, depressionfive year mortality of 80% in men. G Dizziness, postural hypotension, cough G Jaundice, susceptibility to infectionClinical aspects G PolypharmacyThere are several important similarities to and differences from G Anaemia G Abnormal liver function testscancer. One key difference, previously suspected and now G Fear of the futureconfirmed, is the more linear and predictable course in cancer.In addition, it is now recognised that anaemia and pain can be Differences G Predicting life expectancy is less easyregarded more as similarities than differences, and this may G Oedema is a more dominant feature with differing mechanismhave implications for quality of life for patients with advanced G Patients mistakenly perceive it as a more benign conditionheart failure. 59
  • ABC of palliative careManagement Home care for patients with advanced cardiac failurePatients will be faced with frequent admissions to hospital. Thepatient’s preference for management at home must be G Enlist help of heart failure liaison service if available G Assess appropriateness of the home—such as comfortable bed oracknowledged and addressed. The heart failure liaison nurse recliner chair, easy access to toilet, family supportprogramme pioneered in Glasgow has been shown to reduce G Establish need for oxygen therapy—balance benefits and risksthe number of admissions by early detection and management G Monitor fluid status and appropriateness of diuretic treatmentof worsening heart failure and by ensuring that the patient’s G Consider normal release opioid at night (for example, oralhome meets all the necessary requirements for optimal home morphine 5 mg) to ease dyspnoea but use with caution andcare. The patients have uniformly appreciated the support appropriate adjustment of dose in patients with associated renal or respiratory diseaseprovided by this system. G For night sedation consider temazepam 10–20 mg, or Examples of requirement for hospital admission related to thioridazine 10 mg or haloperidol 0.5 mg in elderly peoplethe home circumstances and support are: G Assess need for dietary advice, particularly to ensure adequate energy intakeG Need for intravenous therapy G Ensure optimum treatment of heart failure with emphasis onG Persistent paroxysmal nocturnal breathlessness and symptomatic rather than prognostic benefit orthopnoea G Regularly consider need for hospital admissionG Refractory oedema and fluid leakage from lower limbsG Symptomatic postural hypotensionG Development of dysrhythmias. Management of symptoms of advanced heart failure Dietary advice is important and complex in that the patientmay be obese or cachectic. Frequent small meals are preferable, Breathlessness G Oxygenwhich should be tailored to the patient’s tastes. Tumour G Opioids—regular, normal release oral morphine 5 mg, ornecrosis factor and interleukins are implicated in the aetiology intravenous diamorphine 2.5 mg if patient is acutely distressedof cachexia, and fish oils may reduce their levels. Supplements G Non-drug measures such as fan, positioning, explanation,of fat soluble and water soluble vitamins may also be necessary reassurance G Diuretics, digoxinto counteract the increased urinary loss and reduced G ACE inhibitors, angiotensin receptor blockers, and otherabsorption. A small amount of alcohol may help as an appetite vasodilatorsstimulant and anxiolytic. G Cycle of breathlessness and panic may require an anxiolytic Reduction of fluid intake to 1500 ml a day and avoidance of Muscle wastingexcessively salty foods (but not to the extent of making food G Physiotherapytasteless) will help to control oedema. Exercise may reduce G Assess diet and energy intakebreathlessness and improve both quality of life and psychological Fatiguewellbeing. This must be tailored to each patient’s needs. G Reassess drug therapy LightheadednessDrug treatment G Check for postural hypotensionThe main emphasis is relief from symptoms: drugs being given G Check for drug induced hypotensionto improve prognosis should be reviewed. G Exclude arrhythmia as a cause Opioids, combined with antiemetic drugs if necessary, are Painuseful for control of nocturnal breathlessness. Awareness of G Analgesics—avoid NSAIDs, consider opioids as abovetoxicity because of associated respiratory and renal G Reassess anti-anginal regimen G Non-drug measures —relaxation, TENS, hot packs, dorsalinsufficiency is paramount. The role of alternative opioids such column stimulator, device therapyas oxycodone has not been established for the easing ofdyspnoea. In clinical practice, alternative opioids may be tried Nausea, abnormal taste, anorexia G Check drug treatmentsif side effects limit the use of morphine. Anxiolytics also have G Check liver functionan important role, and achieving the correct balance requires G Frequent small meals and appetite stimulants such as alcoholindividual tailoring of therapy. G Consider metoclopramide Diuretics also have a key role—orally, intravenously, or in Oedemacombination depending on the severity of fluid retention. G Early detection is importantHowever, awareness of the clinical (fatigue, nausea, and G Loop diuretics—frusemide remains first choicelightheadedness from postural hypotension) and biochemical G Spironolactone 25 mg if tolerated. Increasing doses may helpfeatures of overdiuresis is essential. with control of oedema but watch for hyperkalaemia and painful Digoxin can relieve symptoms in patients with advanced breasts G Restrict fluid intake to 1500–2000 ml a dayheart failure, but it is vital that symptoms of toxicity are G Mild salt restriction if toleratedavoided. G Bed rest in early stages; when patient is out of bed, raise lower Angiotensin converting enzyme (ACE) inhibitors and limbs in a recliner chairangiotensin receptor blocking agents are beneficial, and the G Aim for weight loss of 0.5–1 kg a day G Additional diuretic treatments may be needed, such asdose should be titrated to ensure maximum benefit withoutadverse effects. As many patients are volume depleted and bendrofluazide 5 mg or metolazone 2.5 mg/day G Monitor electrolyteshypotensive, small supervised test doses should be given—suchas 6.25 mg of captopril or 2.5 mg of ramapril after 12–24 hourswithout diuretics or equivalent doses of angiotensin receptorblocking agents (definite indication for this group is coughsecondary to ACE inhibitors). In patients unable to take ACEinhibitors and angiotensin receptor blocking agents, othervasodilators (such as hydralazine) might be considered,although in this situation they are of marginal value.60
  • Chronic non-malignant disease Sublingual glyceryl trinitrate may be helpful during The future of palliation in advanced cardiac diseaseepisodes of breathlessness. Influenza and pneumococcalvaccination are worth considering despite the advanced nature G Adaptation of the role of heart failure liaison nurses to include palliative careof the disease. G Combined care from both palliative care specialists and cardiologistsCounselling and psychological support G Improved understanding of mechanisms and treatment ofUnlike for those with cancer, there is no highly developed support nausea and cachexianetwork for patients with end stage cardiac disease. Counselling is G Improved understanding of the role of opioids and anxiolyticcertainly challenging in this setting because of the high incidence agents G Improved recognition of the need for psychological support andof sudden death (up to 50%), as is the misconception of patients, counsellingwho often underestimate the seriousness of the situation.Application of many of the principles of palliative care is neededto optimise this aspect of management. Common comorbidities in patients with ESRF G Diabetic gastroenteropathy G Decubitus ulcersEnd stage renal disease G Diabetic neuropathy G Calciphylaxis G Peripheral vascular disease G FallsDefinitions, incidence, and prevalence G AnginaEnd stage renal disease or failure (ESRF) occurs when theglomerular filtration rate is insufficient to maintain health,usually when the rate is 10 ml/min. Renal replacement therapy(RRT), dialysis, or transplantation has transformed the lives ofpatients with ESRF, though the disease remains incurable with Causes of pain in renal failure10–20% of affected patients dying each year. In the past 20 yearsa fivefold increase in the number of patients accepted on to RRT Concurrent comorbidity Pain related to dialysis G Peripheral vascular disease G Arteriovenous fistula leadingprogrammes has led to a prevalence of 530 patients per million G Diabetic neuropathy to steal syndromepopulation. The median age of patients undergoing dialysis has G Abdominal pain fromincreased from 45 to 65 in a similar time, and diabetes, once Disease consequent on renal failure peritoneal dialysispresent in just 2% of patients having dialysis, is now the most G Amyloid related to dialysis G Cramps and headachescommon cause of ESRF in RRT programmes. This means G Renal osteodystrophy Primary renal diseaseconsiderable comorbidity for many patients. G Calciphylaxis G Adult polycystic kidney diseasePrognosis and causes of deathAge and diabetes are the key factors determining prognosis.The overall one year survival in patients with ESRF on dialysis is84%, but the five year survival of a young person who does not Barriers to good pain controlhave diabetes is 74% while that of someone aged 65 with G Multiple comorbidity and G Adverse effects of drugsdiabetes is 21%. The most common cause of death is multiple drug regimens G Limb preservation despite G Many causes of pain limb ischaemiacardiovascular disease. A considerable number of patients G More than one type of pain G Pain management not achoose to stop dialysis, and a further group opts for initial G Under-reporting of pain focus of training for renalconservative management (without dialysis). Patients who G Altered response to drugs in physicianschoose to stop dialysis have obvious and urgent needs for renal failure G Lack of research intoterminal care; the average time to death is 10 days. A planned G Requirement for close pharmacology of drugs inmultidisciplinary palliative care pathway, available in some monitoring renal failureareas, will help patients who opt for conservative management,who have a less well defined time course with an averageprognosis of seven months. Management of other symptoms related to dialysisManagement of pain and other symptomsAt least 50% of patients undergoing dialysis experience pain, Optimisation of the prescription for dialysis and correction of anaemia may improve many of these symptomswhich is severe for nearly half of them. Pain is often intermittentbut occurs over many years and the diverse causes lead to a high Pruritus Cramps G Emollient cream G Quinineincidence of neuropathic pain. Numerous factors impede good G Antihistaminepain control. A similar approach to that used to manage cancer Lethargy G Phototherapy G Review medicationpain can be taken with the WHO analgesic ladder, including G Naltrexone G Manage insomniaadjuvants where indicated. Careful monitoring for toxicity is G 5HT antagonist 3 G Exclude depressionessential because of the retention of drugs or their metabolites Restless legs G Optimise nutritionin patients with renal failure. The active morphine metabolite, G Avoidance of aggravating G Erythropoietinmorphine 6 glucuronide, is retained in patients with ESRF and medication Hypotension G Clonazepamwhen morphine is taken for chronic pain its retention can lead G Review prescription for dialysis G Levodopato toxicity, including cognitive impairment and myoclonus. G Pergolide NauseaAlternative strong opioids—such as oral hydromorphone and G Investigate cause and treat G Gabapentinsubcutaneous fentanyl or alfentanil and transdermal appropriatelybuprenorphine—are being explored. Clearance of fentanylmay be altered in patients with ESRF, though it does nothave known active metabolites. Other symptoms are also 61
  • ABC of palliative carecommon, occur over many years, and can be difficult to manage Modified WHO analgesic ladder for patients with ESRFas the evidence is scarce or the remedies toxic. All steps G Adjuvants* as indicated by type of painRecognising the preterminal phase and end of life care G NSAIDs†Increasing admissions to hospital and severity of pain and othersymptoms with decreasing performance status often presage Step 1 G Paracetamol 1 g four times a daythe terminal phase of the disease. For example, the pain ofcalciphylaxis, or peripheral vascular disease, with consequent Step 2‡ G Tramadol up to 50 mg four times a dayamputations is known to be associated with a poor prognosis.Introducing palliative care at this stage not only enables better Step 3§symptom control but can help the passage into end of life care Oral route: G Hydromorphone 1.3 mg every four to six hours and as neededif a decision to stop dialysis is taken. Discussion earlier in the G Morphine 5–10 mg every four to six hours and as neededcourse of disease about a person’s wishes for end of life care G If patient is on sufficient regular strong opioid, considerwill greatly aid decision making. “offloading” background dose to fentanyl patch or Most patients dying with ESRF die from their comorbid buprenorphine patch; always titrate to patch and watch forconditions, and their symptoms at the end of life are a change in pain or clinical conditioncontinuation of those already present. Stopping dialysis does G Subcutaneous route: fentanyl, alfentanil, or hydromorphonenot cause pain, but pains already present are likely to continue, * Clonazepam is a useful adjuvant for neuropathic pain in ESRF, titrateand joint, muscle, and skin pains may occur from reduced against toxicity.mobility. Shortness of breath from fluid overload may be † NSAIDs should not be used in a patient who is not receiving dialysis.distressing, and in the preterminal phase ultrafiltration may ‡ Tramadol is preferable to codeine for step 2 as there may beprovide rapid relief. idiosyncratic occurrence of respiratory depression with codeine. Maximum 24 hour dose of tramadol is 200 mg. Dihydrocodeine should be avoided. § All strong opioids should be monitored carefully; remember that painPalliative care needs of patient with ESRF and the patient’s clinical condition often change rapidly.PhysicalG Pain End of life careG Other symptom management G General considerationsG Loss of sexual functioning Acknowledgement and agreement of goals of careG Dietary restrictions Discontinuation of unnecessary investigations, monitoring, andG Body image changes non-palliative medication Haemodialysis (arteriovenous fistulae; vascular access lines) G Continue regular medication for symptom relief Peritoneal dialysis (abdominal distension; catheters) G When parenteral drugs are requiredSocial Psychological Analgesia: use subcutaneous fentanyl or alfentanil* as strongG Loss of employment G Depression opioid of choiceG Change in role G Guilt Antiemesis: can continue cyclizine †, haloperidol, metoclopramide‡,G Dependence on carers and G Anxiety or levomepromazine§ if they are already successful machines G Uncertainty Sedation: midazolam¶G Time spent on dialysis G Anticipatory prescribing with as needed subcutaneousG Loss of freedom for travel medication, which can be put in a 24 hour syringe driver asSpiritual clinically indicated:G Facing own and others death Pain: fentanyl 12.5–25 g as needed or alfentanil 0.1–0.2 mg up toG Cultural: ESRF is more common in Afro-Caribbean people hourlyG Finding meaning out of the experience Retained respiratory secretions: hyoscine butylbromide 20 mg immediately and up to every four hours Terminal agitation distress: midazolam 2.5–5 mg up to hourly Nausea and vomiting: levomepromazine 5 mg up to every eightRespiratory disease hoursWhile formal lung function tests are useful, with palliation the *In patients who have never taken opioids, successful pain relief can beobjective is to make the patient feel better. Therefore, the most achieved with low doses—for example, 150–200 g fentanyl/24practical and pragmatic way of measuring the effectiveness of hours—without excess sedation.treatment is to score breathlessness or cough on a digital or †Avoid if possible because patients with renal failure tend to have dry mouth.analogue scale or by measuring walking distance. An importantexception is hypoxaemia. This is the final common path of ‡Do not exceed 40 mg/24 hours.respiratory failure and on the way leads to several debilitating §Increased sensitivity, very low doses usually suffice.compensatory mechanisms. The objective should be to ¶Increased sensitivity, use 50–75% of normal dose.maintain oxygen saturation above 90%, which will minimise thelikelihood of developing cor pulmonale. Difficulties may arise Optimising lung functionin patients with impaired ventilatory drive who depend in part G Physiological assessment (tests according to pathology)on their hypoxia rather than hypercapnia. Apart from the G Go by measures of breathlessness or exercise toleranceapocryphal “blue bloater” with COPD, impaired drive is a G Measures of lung function are only guidelines as to palliativecommon feature of the neuromuscular diseases. efficacy G Manage hypoxaemia (maintain O2 saturation above 90%):Good care Long term O2 therapyGood general care is central to maintaining quality of life, Exercise O2 G Minimise infectionsocial productivity, and a sense of self. Nutrition is often an G Specific interventions on specialist advice—for example:early casualty of breathlessness as eating requires a lot of effort. Nocturnal ventilatory supportIn turn, this compounds muscle weakness together with falling Surgical volume reduction in COPD62
  • Chronic non-malignant diseasefitness. Equally, bowel care matters: constipation means more Non-medical support and careeffort in defecation and diaphragmatic splinting, both of whichworsen symptoms unnecessarily. General G Explanation G NutritionRehabilitation G Practical aids in the homeFear in any form reduces a patient’s tolerance to distress fromsymptoms. Explanations about the mechanisms of breathing Rehabilitation (specialist help from respiratory physiotherapists or nurses necessary)and how to control and “ride” an episode of breathlessness, G Exercise programmes for fitness and respiratory muscletogether with the assurance that they will not suffocate, help conditioningpatients to control breathlessness. G Effective cough (huffing) when secretions are excessive Practically speaking, exercise programmes for muscle Effective breathing patterns—for example:conditioning generally, and the respiratory muscles in G Purse lip in obstructionparticular, may be beneficial. Training in certain types of G Slow expiratory phase to help abort panic attacks G Breath control during exercisebreathing and developing efficient and effective patterns G Cold air on the face from a hand fan reduces ventilationduring exercise and recovery are important. Techniques suchas breathing with pursed lips and the use of accessory musclesand posture to relieve distress in diseases with obstructivecomponents help to reduce lung volume and the sensation ofbreathlessness. Interestingly, cold air on the face, by activatingthe primitive diving reflex, reduces ventilation andbreathlessness. A hand held fan may be a useful emergencymeasure and can be kept in a pocket or handbag. Effective cough (huffing) is important for patients withexcessive secretions (such as in cystic fibrosis, bronchiectasis,etc) as is the use of postural drainage as a prophylaxis againstthe chronic bronchial damage of recurrent infections. Thesedimensions of care are best delivered by respiratoryphysiotherapists or nurse specialists in specific clinics as part ofa multidisciplinary team.Medical interventionsRespiratory diseases usually affect several parts of therespiratory system and control axis. One should always considereach element in turn to ensure that patients have the bestchance of maintained function.Airways obstructionBronchodilators—Anticholinergics and agonists remain themainstay of treatment and should be used as long as patients A spacer device can facilitate the use of inhalers in breathless patientsare able to take them. Spacer devices are just as good if not in any setting. Reproduced from Rees J, Kanabar D. ABC of asthma.better than nebulisers as drugs can penetrate to the smaller 5th ed. Blackwell Publishing: Oxford, 2006airways. Sustained release theophyllines may benefit some. Steroids—If patients have not had trials of steroid, theyshould be given prednisolone 30 mg for two weeks with review.If there is no substantial improvement in symptoms or exercisetolerance, they should be stopped. If there is benefit, thenweaning to inhaled steroids is preferable to minimise theeffects on muscle strength. Steroids are also likely to boost theappetite and may break an anorexic cycle if that is in process. Managing cough and secretions Anti-inflammatories and antibiotics—Nebulised or oral NSAIDs G Improving effectivenesssuch as ibuprofen may be effective in reducing airways damage G Reducing viscosity of secretions to aid the mucociliary escalatorfrom chronic infection. In patients with bronchiectasis or cystic G Nebulised salinefibrosis, however, control may justify long term use of G Antibiotics if appropriate G N-acetyl cysteine, etc (seek specialist advice)antibiotics or rotations either orally or via nebuliser. This G Effective physiotherapyshould be managed by specialists. Steroids should not be used, G Training in forced expiratory “huffing”except in patients with bronchopulmonary aspergillosis. G Postural drainage G Mini-tracheostomy for suction should be considered withManaging cough specialist adviceIt is as important to promote effective expectoration as to G Treat any bronchospasm or infection G Opioidsreduce irritating or excessive cough. Conventionally in G Anticholinergics by inhalation, mouth, or injectionpalliative care the priority is to reduce secretions and cough aspatients are entering the phase of active dying. This is entirelyright, but in chronic respiratory diseases persisting cough maybe down to ineffectiveness in clearing secretions. 63
  • ABC of palliative careOpioidsIt is almost axiomatic in general training that, because there isa known dose dependent reduction in ventilation with opioids,they are dangerous and potentially life threatening. It is not assimple as this in patients with chronic disease. The only way to be sure that either opioids or sedatives are unsuitable is to conduct a closely monitored therapeuticG Firstly, the reduction in respiratory drive in breathless trial, and if there is serious concern that respiratory drive patients is a potent source of symptom relief and may allow may be compromised, then it is justified to admit the slower and deeper breaths that reduce dead space ventilation patient to monitor the introduction and make breathing more efficient.G Secondly, studies at the end of life show that there is no shortening of expected survival time in patients in whom opioids or sedatives are being titrated up for optimum symptom relief.G Opioids remain the most effective antitussives and should not be withheld for the above reasons either. Though it has not Symptoms due to ALS (either as a direct consequence of been proved, there is a general view that normal release motoneuronal degeneration or indirectly as a consequence opioids such as Oramorph or Sevredol are better for of the primary symptoms) breathlessness, and doses should start at 2.5 mg every four Directly: Indirectly: hours titrated against breathlessness or cough. G Weakness and atrophy G Psychological disturbancesG Finally, as with most chronic disease, pain is present in about G Fasciculations and muscle G Sleep disturbances two thirds of patients and should be managed as in any other cramps G Constipation condition, and opioids if indicated must not be withheld. If G Spasticity G Drooling this is a source of anxiety, then specialist palliative care G Dysarthria G Thick mucous secretions G Dysphagia G Symptoms of chronic physicians or nurses should be involved. G Dyspnoea hypoventilation G Pathological laughing/crying G PainSedativesSedatives have a mixed press in the management ofbreathlessness and results of studies are inconclusive. Somepatients, however, may benefit, and consideration should alwaysbe given to a therapeutic trial. Benzodiazepines in low dose—for example, diazepam 2 mg or lorazepam 0.5 mg every eighthours or buspirone 20 mg a day—will be suitable. When anxietyor panic attacks are a prominent feature, sedative should beused without hesitation.Amyotrophic lateral sclerosis/motorneurone diseaseNeurological disorders are among the leading causes of deathin the Western world and require specific knowledge inpalliative care. As an example, we will concentrate on palliativecare for people with amyotrophic lateral sclerosis (ALS) ormotor neurone disease. ALS is the most common degenerative motoneurone disorderin adults. The mean age at onset is 58 years and the averageduration of disease is three to four years. There is no curativetreatment; the only approved drug (riluzole) prolongs life by Man with motor neurone disease on a ventilator (reproduced withabout three months. The main symptoms are directly or indirectly permission of Dr P Marazzi/Science Photo Library)due to the condition. Palliative care starts with the communicationof the diagnosis and goes all the way to bereavement counselling,involving a large number of different professionals. In the UK,around three quarters of inpatient palliative care/hospice unitsare involved in the care of patients with ALS.Control of symptomsMuscle weakness should be managed by regular exercise, neverto the point of fatigue, and by the use of appropriate aids tomaintain independence and mobility (such as ankle-footorthosis, wheelchair, aids for dressing and eating, etc). Dysphagia should first be treated by an adjustment in diet(recipe books are available from several associations). Specificswallowing techniques can help to prevent aspiration. A PEG isusually well tolerated, provided the forced vital capacity is 50%at the time of introduction. At later stages, PEG insertion shouldbe performed under non-invasive ventilation.64
  • Chronic non-malignant disease Dysarthria can lead to a complete loss of oral Symptoms of chronic nocturnal hypoventilationcommunication. Speech therapy is helpful at the beginning.Modern computer technology offers several options for G Daytime fatigue and sleepiness, concentration problems G Difficulty falling asleep, disturbed sleep, nightmarescommunication even in advanced stages. G Morning headache Dyspnoea is the most severe symptom in ALS. At the onset of G Nervousness, tremor, increased sweating, tachycardiadyspnoea, chest physiotherapy is helpful. Dyspnoeic attacks with G Depression, anxietypronounced anxiety can be treated with sublingual lorazepam G Tachypnoea, dyspnoea, phonation difficulties(0.5–1 mg). Chronic dyspnoea may require morphine G Visible efforts of auxiliary respiratory muscles(2.5–5 mg orally or 1–2 mg subcutaneously or intravenously G Reduced appetite, weight loss, recurrent gastritis G Recurrent or chronic upper respiratory tract infectionsevery four hours). Titration of the dose of morphine against G Cyanosis, oedemathe clinical effect will rarely lead to a life threatening G Vision disturbances, dizziness, syncoperespiratory depression. Months to years before terminal G Diffuse pain in head, neck, and extremitiesrespiratory failure, symptoms of chronic nocturnalhypoventilation ensue, which may considerably hamper thepatient’s quality of life. Non-invasive intermittent ventilation viaa mask is efficient and cost effective in alleviating thesesymptoms. Thick mucous secretions result from a combination of Drugs to treat symptoms in ALS (in order ofdiminished fluid intake and reduced coughing pressure. N- recommendation)acetylcysteine may help. Suction is usually not fully effectiveunless performed via a tracheostomy. Physical therapy with Drug Dose*vibration massage may help initially. Both manually assisted Fasciculations and muscle crampscoughing techniques and mechanical insufflation-exsufflation Mild:can assist in extracting excess mucus from the airway. Magnesium 5 mmol 3–4 times/day Pathological laughing or crying occurs in up to 50% of patients Vitamin E 400 IE twice/dayand can be disturbing in social situations. Physicians should ask Severe:about it and point out that it responds well to medication. Quinine sulphate 200 mg twice/day Pain is common in advanced stages, is often musculoskeletal Carbamazepine 200 mg twice/dayin origin, and should be treated according to the WHO Phenytoin 100 mg 3–4 times/dayanalgesic ladder. Other symptoms can also be relieved by Spasticityappropriate medication. For antispasticity drugs, the patient Baclofen 10–80 mg per 24 hourshas to titrate the dose against the clinical effect as a moderate Tizanidine 6–24 mg per 24 hoursdegree of spasticity is usually better for mobility than a fully Tetrazepam 100–200 mg per 24 hoursflaccid paresis. DroolingInformation on the terminal phase Glycopyrrolate 0.1–0.2 mg subcutaneous/intramuscularAt the onset of dyspnoea or symptoms of chronic times/dayhypoventilation or when the forced vital capacity drops below Transdermal hyoscine 1–2 patches/72 hours50%, patients should be offered information about the terminal patchesphase as at this point they fear that they will “choke to death.” Amitriptyline 10–150 mg/72 hoursDescribing the mechanism of terminal hypercapnic coma and Botulinum toxin injections (for refractory cases)the resulting peaceful death during sleep can relieve this fear. Pathological laughing/crying Amitriptyline 10–150 mg/24 hoursTerminal phase Fluvoxamine 100–200 mg/24 hoursMore than 90% of patients die peacefully, mostly in their sleep. *Usual range of adult daily dose; some patients may require higherThe death process usually begins with the patients slipping from doses of, for example, antispastic medication.sleep into coma due to increasing hypercapnia. If signs ofdyspnoea develop, morphine should be administered beginningwith 2.5–5 mg (oral, subcutaneous, or intravenous) every fourhours. If restlessness or anxiety is present, sublingual lorazepam(start with 1–2.5 mg) or oral or subcutaneous midazolam (startwith 1–2 mg) should be given. Most patients with ALS want todie at home. This can best be achieved through early enrolmentin a hospice or palliative care programme. UNAIDS estimates of the HIV/AIDS epidemic (December A list of associations for patients with ALS can be found at 2005) www.alsmndalliance.org; a list of ALS centres is at People newly infected in 2005 4.9 million www.wfnals.org Total number of people with HIV/AIDS 40.3 million AIDS deaths in 2005 3.1 millionHIV/AIDS Total deaths from AIDS since 1981 25 millionThe natural course of infection with HIV is that it evolves over www.unaids.orga period of years into AIDS, which is uniformly fatal. Theestimates published by UNAIDS show the enormity of thepandemic, reflecting mortality and morbidity of catastrophicproportions. 65
  • ABC of palliative care In developed countries, the introduction of combination Clinical course of AIDStherapies with reverse transcriptase and protease inhibitors(referred to as highly active antiretroviral therapy or HAART) Early stage G Recent diagnosis of AIDSduring the mid-1990s had profound effects on the clinical G Good response to antiretroviral therapy and treatment offeatures and outlook for patients with HIV/AIDS. HAART led infectionsto a lengthening of the time to the development of AIDS and G Normal activities, worksignificantly improved survival after the diagnosis of AIDS. Progressive stage The clinical course of AIDS is characterised by the G Increasing number and frequency of infectionsoccurrence of opportunistic infections and constitutional G Progressive weight loss, increasing fatiguesymptoms related to AIDS (weight loss, fever, and diarrhoea). G Capable of partial activity, workSome patients will develop related malignancy or related Advanced stageneurological disease. Patients suffer increasingly frequent G Increasing or constant infections with poor response toinfections that may become less responsive to therapy and from treatment G Fatigue and debility seriously affect daily functionwhich they recover progressively less well. The clinical course of G Stop active treatment; the goal of treatment is now comfortAIDS can be broadly grouped into four phases that show thegradual shift in the goals of treatment with progression of the Terminal stage G Totally dependentdisease. G Death can be anticipated within days to a few months G Care is entirely comfort orientatedPalliative care and AIDSPalliative care for patients with AIDS is about quality of life andis directed at the alleviation of pain and physical symptoms as Prevalence of symptom in patients with AIDSwell as the assessment and management of psychosocialproblems. It also involves care and support of family members Symptom Prevalence (%)or partners, including bereavement follow-up. It requires a Anorexia/weight loss 91holistic approach to care and is best provided by a well Fatigue/weakness 77coordinated multidisciplinary team. It must be provided in a Pain 63manner that shows respect for the individual patient—their Incontinence (urine/stool) 55dignity, their culture, their choices and wishes regardingtreatment, and their goals and unfinished business. Shortness of breath 48 The timing and delivery of palliative care to patients with Confusion 43AIDS is complicated by the occurrence of clinical episodes Nausea/GI upset 35requiring acute interventions. There should be palliative care Cough 34involvement long before the terminal phase of the illness, Anxiety/depression 32complementary to other medical care and not sequential to it. Loss of vision 25Even though HIV infection is incurable and ultimately fatal, its Skin breakdown 24various manifestations are eminently treatable, and it is Constipation 24appropriate to provide pain relief, symptom control, and Oedema 23psychosocial support to patients with advanced disease while Psychological issues 18they continue to pursue treatment to control the disease. Skin problems 17Pain and symptom control Seizures 16Management involves identifying and treating the underlying Fever 13cause of symptoms, when possible and clinically appropriate. In Potential for skin breakdown 4AIDS, this may include the use of several different methods of Agitation 1treatment, including treatments to control disease. All palliative From Casey House Hospice, Toronto.treatment should be appropriate to the stage of the patient’sdisease and the prognosis, although the fluctuating course ofthe condition can make decisions about appropriate therapyquite difficult. Treatment of pain and symptoms related to AIDS The high incidence of cognitive impairment and dementia Disease specific therapyin the later stages makes advance care planning important, and G Treatment of opportunistic infections: antimicrobial drugsmatters of guardianship and wills should be dealt with as early G Anticancer therapy for related cancer: radiotherapy,as possible. chemotherapy G HAARTPsychosocial problems Symptomatic therapy G Analgesics, antiemeticsIn developed countries, most patients with AIDS arehomosexual men, injecting drug users (IDUs), or from Psychosocial interventions G Non-pharmacological therapies—for example, relaxation,immigrant or other minority groups. In addition to dealing meditationwith a life threatening illness, they bring with them myriad G Management of anxiety, depression: medications,psychosocial problems. Treatment includes support and supportive psychotherapycounselling and the provision of appropriate services, all of G Supportive counsellingwhich need to be done in a culturally appropriate and sensitivemanner.66
  • Chronic non-malignant disease Patients from the male homosexual community, IDUs, and Examples of psychosocial problemsimmigrants from areas where HIV is heterosexually endemicmay have experienced many previous bereavements as friends Psychological Social G Fear, anxiety G Separation from biological familyand family members died from AIDS, which will heighten their G Depression (homosexual men)distress as their disease progresses. G Demoralisation G Poor social networks (IDUs) G Cognitive impairment, G Poor housing, homelessnessTerminal care dementia G Poor financial resources G Alcohol or substance abuse G ConfidentialityThe clinical features of terminal AIDS are not very different to G Multiple bereavementsthose of cancer, although the duration of the terminal phase Cultural G Physical disfigurementmay be more variable. The last few days of life involve debility G Homosexual men G Suicidal ideation G IDUsand dependency, semiconsciousness, and poor oral intake and Spiritual or existential G Immigrants’ attitudes to diseasemay feature generalised pain, restlessness, and rattling G Questions of meaning and and health carerespiration. These symptoms respond to standard measures, purposeincluding subcutaneous analgesics, anxiolytics, and G Questions about religionanticholinergics.Further readingG O’Neill JF, Selwyn PA, Schietinger H, eds. A clinical guide to supportive and palliative care for HIV/AIDS. Washington DC: HIV/AIDS Bureau, US Department of Health and Human Services, 2003.G Pratt RJ. HIV and AIDS. 5th ed. London: Edward Arnold, 2002.G Woodruff R, Glare P. HIV/AIDS in adults. In: Doyle D, ed. Oxford textbook of palliative medicine. 3rd ed. Oxford: Oxford University Press, 2003. 67
  • 16 Community palliative careKeri ThomasFew things in general practice are more important and more Key facts around palliative care in the communityrewarding than enabling a patient to die peacefully at home. ForGPs, district nurses, and others in the primary health care team G 90% of the final year of life is spent at home G Most people prefer to die at home, but the number who choose(PHCT), this is an important and intrinsic part of their work. a hospice is increasingThey deliver most palliative care to patients and generally do this G The home death rate is low (23% for patients with cancer, 19%in a sound and effective way, especially when they are backed by for all deaths)appropriate specialist support. People now live longer with G The hospital death rate is high (55% for patients with cancer,serious illness, with most of the time spent living “normally” at 66% of all deaths)home, so providing good community based care is vital. G 21% of those aged over 65 years in care homes (nursing and residential homes)Sensitively facing the reality of dying and making a plan for the G Death in hospital is more likely if patients are poor, elderly, havefinal stage of life is as important in end of life care as planning for no carers, are female, or have a long illnesspregnancy and labour are in antenatal or early life care. Yet this G Each GP has about 30–40 patients with cancer at one timepre-emptive planning is often omitted, resulting in a tendency G District nurses coordinate most palliative care in the hometowards reactive, crisis led care that does not always meet the G Primary palliative care is optimised by formalised specialistneeds of dying patients. The paradox is that although most of the supportfinal year of life is spent at home, and most people would choose G Less support is available for patients with illnesses other than cancer and their carers and GPsto die there, increasingly most people still die in hospital. The G Gaps in community care include control of symptoms, support ofexcessive numbers of hospital admissions are due mainly to: carers, 24 hour nursing care, night sitters, access to equipment, out of hours supportG Unresolved symptom control G Improving community palliative care services (including careG A breakdown in provision of home care services—for homes) has an impact on hospitals and hospices example, lack of nursing/night sitters G The average length of stay in a hospice is now two weeks, 98% ofG Lack of support for carers. patients have cancer and 50% of patients in hospices will be discharged Many more patients would prefer to die at home than are G Enabling patients to die in the place of their choice can have acurrently able to do so, and a hospital death is more likely to positive effect on the family’s bereavementoccur in particular groups of patients, such as the poor, theelderly, solitary women, and those with a long illness. Manychoose to die in hospices (although currently only about 17%of patients with cancer and 4% of all patients die there), andmany hospice outreach teams extend specialist support to the Other Hospital Homehome, working closely with community teams. Nursing home Hospice Increased advanced care planning—supporting more Percentage 100people to cope well at home and improving the quality ofpalliative care provided by generalists in the community, in 80hospital, and in care homes—would increase the numbers ofpeople who are able to die where they choose and prevent 60some unnecessary hospital admissions, thereby increasinginpatient bed capacity. 40 The most important challenge we face in service provision,therefore, is to enable more people to live well and die well in 20the place and in the manner of their choosing. Practically thismeans to optimise the quality and reliability of palliative careservices provided by all and to reduce crises and unnecessary 0 Preference for Where people Where people diehospital admissions. place of death with cancer die - all causes Priorities for end of life care in England, Wales, and Scotland (data fromHome care Cecily Saunders Foundation and National Council for Palliative Care)Ninety percent of the final year of life is spent at home, nomatter where the patient eventually dies. Home is a special place,a state of mind, a place to be ourselves most fully. It representslife, activity, self determination, and retaining control, ratherthan illness, passivity, and the “patient mode” of inpatient care.The preferred place of care may seem to change nearer death;this may be by default—for example, when patients or theircarers feel unable to cope, for relief of symptoms, the fear ofbeing a burden, and sometimes conflict between the patient andthe carer’s choice. But it has to be questioned whether this is real“choice” or a response to practicalities by default—with betterplanning and support can a change sometimes be averted? Manypeople would choose to spend most time at home but to die in a68
  • Community palliative carehospice, an appropriate choice for many—yet many of our Needs and requests of patients and carershospice services would struggle currently to meet thispreference, especially for patients without cancer. Requirements of patients and carers at home G Nursing and medical care With the increase in advanced directives or living wills, it is G Good symptom controlmore important than ever to have these difficult discussions G Information—for example, what to expect/who to phone in a crisiswith patients and their families early on and together form an G Practical advice/help/equipmentadvanced care plan including decisions about their G Good liaison across boundariespreferences, such as place of care, which should be noted and G Continuity of relationship with clinicianscommunicated to others. Other areas to cover include a G Social care—for example, continuous care funding, etc G Support for carers—night sitters, Marie Curie nurses, etcnominated proxy, do not resuscitate (DNR) decisions, what G Carers’ needs assessedpatients would or would not like to happen, what to do in a G Preparing families for a deathcrisis, and special requests—for example, organ donation. This G Information on what to do after deathenables a greater sense of self determination and control and What patients especially appreciate from their GPsbetter planning of care based on the needs of the patient. G Continuity of relationship Time is short for the dying. Towards the end of life the pace G Being listened toof change may be rapid, and without good planning and G Opportunity to ventilate feelingsproactive management, the speed of events can catch out the G Being accessiblebest of us. Enabling dying patients to remain at home involves a G Effective symptom controlclose collaboration of many people, services, and agencies,both generalist and specialist and, at best, an agreed system ormanaged plan of care (such as the gold standards framework).A bewildering number of people can become involved,sometimes causing a confusing mismatch of services andadding to the trauma of the dying process. Patients and carers Key components of best practice in community palliativeappreciate the continuity, coordination, and ongoing carerelationship with their primary care team or specialist provider. Use of the gold standards framework, NICE Guidance on So within community palliative care there is a pressing need Supportive and Palliative Care, Generalist Palliative Carefor active anticipatory management, coordination, and www.nice.org.uk G Patients with needs for palliative care are identified according to“orchestration” of services to enable good home care for thedying. Although GPs may feel pressurised by time constraints, agreed criteria and a management plan discussed within the multidisciplinary teamthe primary care team, particularly the district nurses, are in a G These patients and their carers are regularly assessed with agreedkey role to perform this function, and often they are the assessment toolsmainstay of care at this most crucial time. This is in line with G Anticipated needs are noted, planned for, and addressedthe “cradle to grave” concepts inherent in primary care; G Needs of patients and carers are communicated within the teamknowledge of context and community and of continuing and to specialist colleagues, as appropriate G Preferred place of care and place of death are discussed andsupportive relationship and care of the dying is close to the noted, and measures taken to comply when possibleheart of most people working in primary care. As Gomas G A named person in the practice team orchestrates coordination(1993) said “Palliative care at home embraces what is most of carenoble in medicine: sometimes curing, always relieving, G Relevant information is passed to those providing care out ofsupporting right to the end.” hours, and drugs that may be needed left in the home G A protocol for care in the dying phase is followed, such as the Liverpool care pathway for the dying patientThe needs of dying patients G Carers are educated, enabled, and supported, which includes the provision of specific information, financial advice, andPalliative care services should respond to the needs of patients bereavement care G Audit, reflective practice, development of practice protocols, andand carers and deliver to their agenda. This requires a holistic targeted learning are encouraged as part of personal, practice,assessment, including non-medical psychosocial issues. In and primary care organisation/NHS trust development plansgeneral, patients want to remain as free from symptoms aspossible and to feel secure and supported, with goodinformation and proactive planning. This allows thecontinued journeying to other important and deeper levelsinvolved in the dying process—for example, lovingrelationships, retaining dignity, self worth, spiritual peace.Various studies confirm what is required of healthcareprofessionals by dying patients and their carers. Good The term “psychosocial” care includes the psychological,communication and information figure largely—for example, social, spiritual, and practical needs of the patient andclear advice on what to do in an emergency, what to expect— carers, all of which need to be assessed and addressedand also the steadfast continuity of relationships, the “being where possiblethere,” as “companions on the journey” with our patients.This trusted relationship and supportive role should never beunderestimated. Support from councillors or psychologists is sometimesavailable, which may smooth the transition and mentaladaptation required in coming to terms with dying. Socialservices need to be involved for advice on financial benefits,continuing care services, respite, and social care. The DS1500 69
  • ABC of palliative careattendance allowance form should be used by primary care A protocol for out of hours (OOH) palliative careteams to enable speedy additional funding for those in the lastsix months of life. Spiritual needs may be hard to assess and G Communication: Handover form to OOH providerpersonally challenging but vital to enable people to move Inform others—for example, hospicetowards a peaceful conclusion of their lives. Referral to the Does the carer know what to do in a crisis?appropriate spiritual advisor and awareness of ethnic G Carer support:differences in this diverse multicultural nation is all part of Coordinate pre-emptive care—for example, night sittersgood care. Practical needs include equipment such as Give written information to carersmattresses, wheelchairs, commodes, syringe driver, and home Emergency support—for example, rapid response team G Medical support:modifications such as external key boxes and handrails, etc. Anticipated management in handover form Crisis pack, guidelines, etc, and ongoing teachingPrimary care team response 24 hour specialist advice available—for example, from hospiceWorking as a team, the PHCT can provide continuous and G Drugs/equipment:coordinated supportive care in the community. Early referral to Leave anticipated drugs in homethe district nursing service is preferred, allowing time for a full Palliative care bags availableassessment of the needs of the patient and carer, early referral On-call stocked pharmaciststo other services, ordering of equipment, and time to develop a Improve access to palliative care drugsrelationship with the patient and carer as advocate and “key Suggested list of drugs to be left in the home of every palliative care patientworker”’ before later deterioration. G Diamorphine G Cyclizine/haloperidolOut of hours care G MidazolamParticular attention should be paid to improving the continuity G Hyoscine butylbromide/hydrobromide/glycopyrroniumof care out of hours, which accounts for about 75% of the Adapted from Thomas K, Eur J Pall Care 2000;7:22–5.week. Without this vital aspect, all the good work of primarycare can be instantly dismantled, and the patient can beadmitted to hospital in crisis, possibly to remain there untildeath. In the UK, changes in the contracted out of hours covermight threaten the continuity of care for dying patients. Withbetter proactive management and the use of an agreed Carer breakdown is a crucial and sometimes unrecognised issue, and carers have their own separateprotocol, a handover form, and good access to drugs, however, needs for assessment and support. This importantthese situations could be avoided. factor must be addressed if any impact is to be made on home based palliative care (see chapter 14)Support for family and carersSupport for the family and carer can be one of the mostimportant aspects of the holistic care provided by primary careteams, backed up by hospice support if available. Carerbreakdown is often the key factor in prompting institutionalisedcare for dying patients. Carers should be included as fullmembers of the team, enabled, forewarned, informed, andtaught to care for the dying patient to the level desired. This has Supporting carers—what primary care can doconsequences for the carer in bereavement, with a greater G Acknowledge carers, what they do, and the problems they havesatisfaction that the patient’s final wishes were fulfilled and fewer G Assess health and welfare of the carer as well as the patient“if only . . .” regrets later. The toll of caring for a dying person G Treat carers as you would other team members and listen to theircan be considerable in both physical and emotional terms; many opinionscarers are elderly and infirm themselves and there is an G Include them in discussions about the patientincreased morbidity and mortality of carers in bereavement. G Flag informal carer’s notes, so other health workers are aware of their circumstances In some surveys of both patients and families, the carer’s G Give carers a choice about which tasks they undertakeanxiety is rated alongside the patient’s symptoms as the most G Provide information about the conditionsevere problem. There is resounding evidence that without G Provide information about being a carer and support andsupport from family and friends it would be impossible for benefits availablemany patients to remain at home. G Provide information about local services available for patient and This is one issue where evidence confirms that primary care carer G Ensure that services and equipment providedcan make a real and valued difference. Many carers, however, G Liaise with other services—be an advocate for the carerfeel that GPs do not understand their needs, and in turn many G Ensure staff are informed about the needs and problems ofGPs and district nurses feel they lack the relevant time, informal carersresources, and training to take a more proactive role. The G Respond quickly and sympathetically to crisis situationsprimary care team, however, is in a key position to help, both G Give or arrange training—for example, in lifting and moving,personally and in coordinating services. Separate assessment giving medication, etc G Confide in and listen to patients/carers—let them expressand practical support for carers is therefore required and, with their needs and support themsupport from social services and self help groups, carers are G Suggest coping strategies, both internal (faith, positive attitude,then more likely to be able to withstand the pressure. Those etc) and external (social networks)without carers may struggle even more, and they present G Development of a bereavement protocol and raising awareness ofparticular difficulties for primary care in an age of increasing bereaved patients in practice teamssolitary living. G Assemble a list of local contacts for bereavement support Carers need time to ask questions, to discuss decisions, tohelp relieve their anxiety, and to create a better understanding70
  • Community palliative careof what is happening. It is often helpful to rehearse with thecarer what to do in certain situations, such as if the patient hasuncontrolled symptoms or when the patient dies. Together with the provision of back up 24 hour contactdetails, this will enhance a sense of security and confidence andreduce the chance of crisis calls. Management plans, advanceddirectives, and do not resuscitate decisions need to be discussedand communicated to others—for example, ambulance staff—to prevent the sad situation of inappropriate and failedresuscitation attempts. Supporting carers in bereavement is akey role of primary care, with planned visits, consultation alertsby tagging of notes, pre-emptive supportive care, and referral tolocal bereavement support groups. End of life care is important (reproduced with permission of Samuel Ashfield/Science Photo Library)Other settings and patients withoutcancer Care needs for different disease trajectories Predictable trajectory—for example, for patients with cancerIn assessing comprehensive palliative care services in a locality, G Family supportother care settings must be considered. About 20% of people G Symptom controldie in care homes and the end of life care provided for such G Continuity of relationshippeople is important, though sometimes of variable quality. G Life closure G Adaptability to rapid changesThere are specific issues about care homes, such as theirindependent ownership, clinical governance, staff needs, Erratic trajectory—for example, for patients with organ systemmultiple pathology of these patients, variable primary care failure, heart failure, COPD, renal failure G Preplanning for urgent situationsarrangements, etc, which make this issue complex, and, despite G Life closurebest efforts, too often patients may be given suboptimal care G Prevention of exacerbationsand admitted to hospital in the final stages. Some care homes G Decision making about benefits of low yield treatmentsdevelop educational initiatives and specialist inreach and local G Support at homeguidelines, such as the use of pathways and frameworks, but G Prepare family for “sudden death”this is an issue requiring further work to produce a more Long term gradual decline—for example, for patients withconsistent high quality standard of care. Patients in private dementia and frailty G Endurancehospitals and community hospitals can sometimes be excluded G Long term home care service and supervisionfrom generalist and specialist palliative care services and G Helping carer to find meaningprovision may be suboptimal. Practices and procedures need to G Avoiding unnecessary lingeringbe agreed with the relevant staff and authorities to maintain G Keeping skin intacthigh quality care for dying patients, such as symptom guidance, G Finding moments of joy and meaning for the patientreferral criteria, accessing specialist drugs, and support, etc. The current provision of palliative care services in the UKstill largely favours patients with cancer. Meanwhile, those withother common end stage diagnoses such as heart failure,COPD, renal failure, neurological disease, and dementia, whohave equally severe symptoms with similarly poor prognoses,may have reduced access to services or specialist advice,especially in the community—for example, lack of specialist Cancersupport, Marie Curie or Macmillan nurses, reduced access to Function Highadvice or equipment etc. “Do I have to have cancer to get thiskind of care?” is a natural response from patients with non-malignant but equally serious conditions. The improvements in Deathmanagement for patients with cancer by community providers Low Timeneed to be transferred to patients with other conditions. As an Organ system failureapproximation, each year every GP has about 20 patients who Function 5-7 Organ High 5 Cancerdie, of whom about five have cancer, five to seven have organ failure 1-2 Suddenfailure such as heart failure or COPD, and six to seven have old deathage comorbidities, frailty, and dementia, with one to two 6-7 Dementia, frailty Death and declinesudden deaths. The less predictable trajectories of illness in the Low Timegroup with organ failure mean greater hospital involvement Dementia/frailtyand more difficulty predicting the terminal stages and Function Highintroducing supportive care. For all patients with end stageillnesses, irrespective of the diagnosis, it is still important toapply palliative care principles, to recognise deterioration, and Deathto include such patients in service provision—for example, Low Timespecialist advice on accurate assessment and control ofsymptoms, respite care, access to equipment, information Workload of general practitioners, with illness trajectories for patients withtransfer, and handover forms. cancer, organ failure, and old age, frailty, dementia, and decline 71
  • ABC of palliative careMultiprofessional teamworkSpecialist palliative care services, largely funded by the voluntarysector, have enhanced the quality of care given to dying patientsthroughout the world and improved our level of knowledge andunderstanding of the art and science of palliative care. Themultiprofessional specialist palliative care team adds expertiseand support to the generalist professionals in the communityand to the patient and carer. Such support includes hospiceoutreach and hospice at home, respite admissions, clinical nursespecialists or Macmillan nurses, Marie Curie nurses providinghands-on nursing in patients’ houses often overnight in the lastdays of life, day centres offering social support and activities andalso complementary therapies, and much more.Clinical challengesControl of symptoms, particularly pain management, can be Marie Curie nurses provide hands-on care within the patient’s home duringdifficult in the community and is often poor, and better the last days of life (with permission of Marie Curie Cancer Care)assessment, use of guidelines, and coworking with specialists canimprove this. Education must be targeted and accessible andshould include care of non-malignant conditions. For those in The gold standards frameworkprimary care, there may be some clinical conditions they rarely The gold standards framework aims to develop a practice basedmeet and may feel less confident to manage. Seeking specialist system to improve and optimise the organisation and quality ofadvice and reassurance that the best care is being provided can care for patients and their carers in their last year of life. It can be summarised as follows:be invaluable, while maintaining the continuity of relationship G One gold standard for all patients nearing the end of lifeprovided by the primary care team. Some drugs often used in G Three processes: identify, assess, and planpalliative care are not specifically licensed for that use and may G Five goals of the gold standard to enable patients to die well:be unfamiliar to GPs, so advice should be sought. Symptoms controlled as much as possible For many patients, including those with diagnoses other Living and dying where they choosethan cancer, development of “self care” and maximising of Better advanced care planning information, feeling safe and supported with fewer crisesinternal resources can be helpful, and the use of psychological Carers feeling supported, involved, empowered, and satisfiedor psycho-oncology services can help people to cope better. with care Staff feeling confident, satisfied with good communication, andLegal issues team working with specialistsThe responsibility for notifying a death to the registrar lies with G Seven key tasks—the seven Cs:the relative or other person present at the death. A doctor who Communicationattended the patient during the last illness will normally issue a Coordinationdeath certificate or report the case to the coroner. In the light Control of symptomsof the Shipman inquiry, however, these procedures are Continuity and out of hours Continued learningcurrently being re-examined and some radical changes made. Cover supportFor more details consult the BMA website on www.bma.org.uk Care in the dying phaseor your local primary care organisation. For more details and resources, see www.goldstandardsframework.nhs.ukOptimising home care—some modelsof good practiceSo how can the best quality of care in the community and thebest collaboration between generalist and specialists beensured? Two complementary models are in current use in the The three central processes of GSF all involve improvedUK to improve community palliative care—the gold standards communicationframework for the last months/year of life and the Liverpool G Identify the key group of patients—for instance, using a registercare pathway for the dying used in the last days of life. and agreed criteria G Assess their main needs, both physical and psychosocial, andThe gold standards framework (GSF) those of the carersThe GSF is a common sense, primary care based approach to G Plan ahead for problems, including out of hours—move fromformalising best practice, so that good care becomes standard reactive to proactive care by anticipation and preventionfor all patients every time. GSF users find it affirms their goodpractice, improves consistency of care so that “fewer patientsslip through the net,” and improves the experience of care forpatients, carers, and staff. This work is underpinned by bestavailable evidence, fully evaluated (recommended in NICEGuidance and by the Royal College of General Practitioners),and is extensively used by primary care teams across the UK. The framework is easily used for patients without cancernearing the end of life, and adaptations are developing for carehomes, hospitals, and other settings.72
  • Community palliative careThe Liverpool care pathway (LCP) Best practice in the last hours and days of lifeThe LCP was developed as a framework to enable generaliststaff on hospital wards to care better for uncomplicated dying (See for example, the Liverpool care pathway, www.lcp- mariecurie.org.uk)patients and later extended to the community, care homes, and G Current medications are assessed and non-essentialshospice. An abbreviated form is integrated into the GSF as discontinued“C7.” It allows standardisation and benchmarking of care to G “As required” subcutaneous medication is prescribed accordingensure consistency of care in the last few days of life. It is to an agreed protocol to manage pain, agitation, nausea andrecommended that new areas in the community begin with GSF vomiting, and respiratory tract secretions G Decisions are taken to discontinue inappropriate interventions,but later add LCP, while hospices and hospitals use LCP first. including blood tests, intravenous fluids, and observation of vital Within England, the NHS Modernisation Agency and more signsrecently the NHS End of Life Care Programme G The insights of the patient, family, and carers into the patient’s(www.modern.nhs.uk/cancer/endoflife) support these two condition are identifiedestablished models of generalist care for patients with and G Religious and spiritual needs of the patient, family, and carers arewithout cancer. Advanced care planning tools are also assessed G Means of informing family and carers of the patient’s impendingrecommended to promote choice and early planning death are identifieddiscussions with patients, communicate decisions to others via a G The family and carers are given appropriate written informationpatient held record, and ensure more care focused on the G The GP’s practice is made aware of the patient’s conditionpatient. One example is the preferred place of care document G A plan of care is explained and discussed with the patient, family,that is in the early stages of use in England. Together, it is and carershoped that use of these tools will enable a better quality ofpalliative care to become mainstream within the NHS, with the“skilling up” of generalists, with fewer hospital admissions andmore patients being enabled to die where they choose.Conclusion A death dominated by fear, crises, inappropriateGood home care is vital. We now have the new situation of a admissions, overmedicalisation, and poor communicationpopulation growing old and unwell more slowly than in can be a tragedy and a failure of our medical system;previous generations—this is a new “epidemic” that we have not enabling a peaceful death at home can be a greatpreviously met or dealt with. With the demographic changes of accomplishment for all concernedageing populations, better treatments and chronicity of endstage illnesses, fewer inpatient beds, and rising costs, there is agrowing imperative to provide good home care for all seriouslyill patients. Key issues include enablement of generalists,advanced care planning to determine need and preference,application of successful developments to patients with diseasesother than cancer and in other settings, enhanced carersupport and self care, high quality 24 hour clinicalmanagement and service provision, and good communicationacross boundaries. As we rethink our palliative and supportive care services inresponse to this burgeoning need, the holistic approach ofprimary care is well placed to meet the challenge, if it is Further readingenabled to do so. Primary care teams in the community can G Gomas J-M. Palliative care at home: A reality or missiondeliver excellent palliative care for their dying patients and impossible? Pall Med 1993;7:45–59.enable patients to die well where they choose when G Piercy J. The plight of the informal carer. In: Charlton R, ed.complemented by good access to specialist services, support, Primary palliative care. Oxford: Radcliffe Medical Press, 2002. G Simon C. Informal carers and the primary care team. Br J Genand expertise. As demand for community care increases infuture, it is important to maximise the potential of primary Pract 2001;51:920–3. G Thomas K. Out of hours palliative care—bridging the gap. Eur Jpalliative care and the use of frameworks or protocols with Pall Care 2000;7:22–5.good collaboration with specialists. 73
  • 17 BereavementMarilyn RelfBereavement is a universal human experience. The way it isexperienced and expressed varies, reflecting such factors as themeaning of the lost relationship, personality, and ways ofcoping. The loss of an important relationship is a personalcrisis, and, like other stressful life events, bereavement hasserious health consequences for a substantial minority ofpeople. It is associated with high mortality for some groups andup to a third of bereaved people develop a depressive illness.Help targeted at those most at risk has been shown to beeffective and to make the most efficient use of scarce resources.Grief Courtesy of photos.comGrief is multidimensional. It has an impact on behaviour,emotions, cognitive processes, physical health, social Dimensions of loss and common expressions of grieffunctioning, and spiritual beliefs. A major loss forces people toadapt their assumptions about the world and about themselves, Dimension Expressionand grief is a transitional process by which people assimilate Emotionsthe reality of their loss and find a way of living without the Depression Episodic waves of dejection, sadness, sorrow,external presence of the person who died. Traditionally, this despairprocess has been described as consisting of overlapping phases. Anxiety Fear of breaking down, going crazy, dying,While it is more useful to think of grief as characterised by not coping Guilt About events surrounding loss or pastsimultaneous change and adjustment, such models provide behaviouruseful descriptions of the major themes of grief. Anger Anger/irritation with deceased, family, The initial reaction is shock and disbelief accompanied by a professionals, Godsense of unreality. This occurs even when death is expected but Loneliness Feeling alone, bouts of intense lonelinessmay last longer and be more intense after an unexpected loss. Loss of enjoyment Nothing can be pleasurable without the Numbness is replaced with waves of intense pining and deceased Relief Relief now the suffering of the deceased hasdistress. The desire to recover a loved one is strong and endedpreoccupation with memories, restless searching, dreams, and Behavioursauditory and sensory awareness of the deceased are common. Agitation Tension, restlessness, overactivity, searchingBereavement affects the immune system, and physical symptoms for deceasedmay also be caused by anxiety and changes in behaviour such as Fatigue Cognitive impairment, lassitude, poorloss of sleep or altered nutrition, or may mimic the symptoms of concentrationthe deceased. A crucial factor is the meaning of the loss, and Crying Tears, sad expressionbereaved people search for an understanding of why and how Attitudesthe death occurred. The events surrounding the death may be Self reproach Regrets about past behaviour toward deceasedobsessively reviewed. For some, there may be questioning of Low self esteem Inadequacy, failure, incompetence, worthlessnesspreviously deeply held beliefs, while others find great support Hopelessness Loss of purpose, apathy, no desire to go onfrom their faith, the rituals associated with it, and the social livingcontact with others that religious affiliation often brings. Sense of unreality Feeling removed from current eventsSymptoms of depression such as despair, poor concentration, Suspicion Doubting othersapathy, social withdrawal, lack of purpose, and sadness are Social withdrawal Difficulty in maintaining relationshipscommon for more than a year after an important bereavement. Toward deceased Yearning/pining, preoccupation,This reflects the multidimensional impact of loss. hallucinations, idealisation To carry on without what they have lost, bereaved people Physiologicalmay need to rebuild their identities, find new purpose, acquire Appetite Loss of appetite, weight change Sleep Insomnia, early morning wakingnew skills, and take on new roles. Gradually people manage these Physical complaints Such as, headaches, muscular pains,adjustments more effectively and more positive feelings emerge indigestion, shortness of breath, blurredaccompanied by renewed energy and hope for the future. vision, lump in throat, sighing, dry mouth,Eventually most bereaved people can remember the deceased palpitations, hair losswithout feeling overwhelmed. The deceased continue to be part Substance use Increased use of psychotropic medicines,of their lives, however, and family events and anniversaries may alcohol, tobacco Illness Particularly infections and stress relatedreawaken painful memories and feelings. In this sense there is illnessno definite end point that marks “recovery” from grief. Spiritual A central notion of traditional models of grief is that it must Search for meaning Questioning beliefs and purpose of life.be confronted and expressed, otherwise it may manifest in and purpose Finding comfort in faith, beliefs, ritualssome other way, such as depression or anxiety. Throughout the Identityperiod of mourning, however, most people cope by oscillating Identity Changes to self concept, self esteem74
  • Bereavementbetween confronting grief (for example, thinking about thedeceased, pining, holding on to memories, expressing feelings)and seeking distraction to manage everyday life (for example,suppressing memories and taking “time off” from grief bykeeping busy, regulating emotions). Neither pattern of copingis problematic and difficulties are likely only if the balance ofbehaviour is oriented exclusively on loss (chronic grief) oravoidance (absent grief). Although grief is universal, socialnorms vary and what is viewed as “normal” differs both withinand across cultures. Personality factors, sex, and culturalbackground will influence the degree of individual oscillation—for example, women may be more emotional and loss focusedwhile men may be more inclined to cope by seekinginformation, thinking through problems, taking action, andseeking diversion.Factors associated with poor adjustment “The death of Madame Bovary” by Albert-Auguste Fourie (b 1854).Research has identified several factors that influence the course Reproduced with permission from Musée des Beaux-Arts, Rouen, France/of grief and are associated with ongoing poor health. There are Lauros / Giraudon/ The Bridgeman Art Librarythree groups of factors: situational, individual, andenvironmental. Situational is the circumstances surrounding the death andthe impact of concurrent life events. Deaths that are untimely,unexpected, stigmatised, or unduly disturbing cause moresevere and more prolonged grief. The death of someone withterminal illness can still be unexpected and distressing, and thestrain of caring for a terminally ill person for more than sixmonths also increases risk. People from minority cultural or Factors to consider when assessing riskethnic groups may experience problems if they are not able tofollow the rituals and customs they think are appropriate. Situational G How distressing was the illness and death?Concurrent crises such as multiple losses and financial G Concurrent stressdifficulties also strain coping resources. Individual Individual factors concern the meaning of the lost G Meaning and nature of the lost relationshiprelationship and personal factors. The subjective meaning of G Previous physical and psychological healththe loss is more important than kinship, and the closer the G Personality and coping stylerelationship, the greater the risk. The more necessary the Socialdeceased was for the bereaved person’s sense of wellbeing and G Quality of supportself esteem, the more all pervading the sense of loss. The lossof a child is particularly difficult. Highly ambivalentrelationships are associated with continuing high levels ofdistress, particularly guilt. Studies that compare the health ofwidows and widowers with married people show that widowersare at greater risk, particularly younger men. Pre-existinghealth problems may be exacerbated by bereavement, and therisk of suicide is greater among those who have had a previouspsychiatric illness. Environmental is the social and cultural context of risk. Aperceived lack of support is the common factor. Bereavementmay deprive people of their main source of support and sharedsuffering, and differential grieving patterns within socialnetworks may compound this. Family discord is a source ofadditional stress. Among elderly people, poor health, reducedmobility, and sensory losses may make it more difficult to copeand reduce the capacity to develop new interests orrelationships. A bereavement can take away a person’s main source of supportAssessing complicated grief (photos.com)As grief and its expression are influenced by the society in whicha bereaved individual lives, and by attitudes and expectations inthe immediate family, assessing grief is complex. The focusshould be on understanding the individual and on recognisingtheir strengths and resources as well as potential difficulties. Thefollowing should be taken into account: Intensity and duration of feelings and behaviour—A woman whocries every day in the first few weeks after the loss of herhusband or partner is within the normal range; if she is doing 75
  • ABC of palliative careso 12 months later there is cause for concern. Prolongedintense pining, self reproach, and anger are danger signals, asis prolonged withdrawal from social contact. Failure to showany grief may also be problematic, but people cope in differentways and some recover quickly, especially if they were wellprepared for the death. Culturally determined mourning practices—A mother whomaintains the room of her young son, who died four years ago,as a shrine would be unusual in the UK. In Japan, however, awidow might talk to her dead husband for the rest of her life asshe makes offerings at the household shrine. In the UK, thenorm is to keep feelings private, and men in particular mayexperience social pressure to suppress emotion. Risk factors described above that may make grief moreintense and prolonged. Personality—It is important to understand how individualsusually cope with challenges. Do they normally express emotiondramatically or are they self contained and private? Howcharacteristic is the behaviour? What aspects of their situation It would be unusual in the UK for a mother to maintain the room of a dead child as a shrineare particularly distressing for them?Vulnerable groups Books for children to read or use G Varley S. Badger’s parting gifts. London: Pictures Lions, 1994.Children Available in other languages.Well meaning adults often wish to protect children from G Crossley D. Muddles, puddles and sunshine. Gloucester: Winston’spainful events but by doing so often leave children feeling Wish, 2000.excluded from events that are important to them. Children G Couldrick A. When your mum or dad has cancer. Oxford: Sobell Publications, 1991.begin to develop an understanding of some aspects of death G Heegard M. When someone very special dies. Minneapolis: Woodlandand bereavement as early as 2 or 3 years. By the age of 5, over Press, 1988. (Workbook)half of children have full understanding, and virtually all G Stickney D. Waterbugs and dragonflies. London: Mowbray, 1982.children will by the age of 8. How early a child develops such Organisations such as Winston’s Wish and the Child Bereavement Trustunderstanding depends primarily on whether adults have given offer a wide range of publications and resources for children and theirtruthful and sensitive explanations of any experiences of loss familiesthat the child may have had, such as the death of pets, and onlysecondarily on the level of cognitive development. When a death is about to occur, or has occurred, it ishelpful to discuss with parents what experience of death theirchildren have and what they have been told, and understand,about the current situation. It is important to encouragechildren to ask questions. Parents are the best people to talk totheir children, but they may need support and advice fromprofessionals. Families often find it helpful to create memoryboxes to store treasured photos and keepsakes, to readstorybooks, or to use the workbooks on death and bereavementthat are now available. Parents may be preoccupied with the practical challenges ofcaring for someone who is dying or overwhelmed with theirown grief. It may be useful to involve family friends or teachers.Adolescents struggling to develop their individuality andindependence may find members of their peer group to behelpful, particularly if they know someone who has alsoexperienced bereavement. Support and information is available from national andlocal organisations concerned with the needs of childrenexperiencing bereavement. Information on bereavement is available from a number of sources — local and nationalConfused elderly people and those with learning difficultiesThe needs of these groups for help in dealing with bereavementhave often been ignored. Repeated explanations and supportedinvolvement in the important events, such as the funeral andvisiting the grave, have been shown to reduce the repetitiousquestions about the whereabouts of the dead person byconfused elderly people or difficult and withdrawn behaviour inpeople with learning disabilities. This makes their continuingcare less demanding for both family and professional groups.76
  • BereavementWhat helps? Useful organisationsIdentifying people whose grief may be more complex—Many difficulties Childhood Bereavement Networkcan be avoided by work before the death to minimise the effect 8 Wakley Street, London EC1V 7QE (tel 020 7843 6309)of factors that increase the risks to health and wellbeing A national network of service providers. Contact for information about resources for bereaved childrenassociated with bereavement. It is helpful to involve familymembers in decision making, provide information, check out Child Bereavement Trust Aston House, High Street, West Wycombe, Bucks HP14 3AG (telwhat people understand, encourage questions, and offer 01494 446648, helpline 0845 357 1000)opportunities after bereavement to talk to those who provided www.childbereavement.org.ukcare at the end of life. If misunderstandings or disagreements Resources and information for bereaved families and forabout the care of the patient are ignored, family members may professionalsremain angry and distressed and find it harder to make sense Child Death Helplineof their situation. Bereavement Services Department, Great Ormond Street Hospital, Being present at the death, seeing the body afterwards, and Great Ormond Street, London WC1N 3JH (tel 020 7813 8551,attending funerals and memorial services—These are helpful helpline: 0800 282986) Befriending and emotional support from volunteer bereavedprovided the bereaved person wishes to participate. It may be parents for those affected by the death of a childthe first time an adult has seen a dead person, and information Compassionate Friendsshould be given about what to expect. Children and young 53 North Street, Bristol BS3 1EN (tel 0117 966 5202, helpline 0845people should be offered the choice to see the body and attend 123 2304) www.tcf.org.ukfunerals provided they are given appropriate explanations National organisation with local branches. Offers befriending toabout what to expect and support. bereaved parents after loss of child of any age Providing information—Information about how to register a Cruse Bereavement Caredeath, common aspects of grief, and local and national support Cruse House, 126 Sheen Road, Richmond TW9 1UR (tel 020 8939services should be provided through empathetic personal 9530, helpline 0870 167 1677) www.crusebereavement.org.ukcontact and easy to read leaflets. National organisation with local branches. Offers bereavement Bereavement support and counselling—While grief is a normal support, counselling, advice, and informationreaction to loss, the general lack of understanding combined Jewish Bereavement Counselling Servicewith social pressure to keep feelings private means that 8–10 Forty Avenue, Wembley, Middlesex (tel 020 8385 1874) www.jvisit.org.ukbereaved people may feel isolated and find it hard to seek help. Counselling by trained volunteers. Telephone helplineOne advantage of palliative care is that support can be offered Lesbian and Gay Bereavement Projectto bereaved people without them having to seek help. Healthy Gay Living Centre, 40 Borough High Street, London SE1Therapeutic counselling is unlikely to be needed by most 1XW (tel 020 7403 5969 restricted hours)bereaved people. A substantial minority, however, benefit from Trained volunteers offer support and information to bereavedservices that provide sensitive listening, reassurance, and help lesbians and gay men and their families and friends; education;with managing all the changes posed by bereavement. It is telephone helpline (evenings)good practice to assess the need for ongoing support and to SANDS (Stillbirth and Neonatal Death Society)offer support proactively, particularly to those who lack social 28 Portland Place, London W1B 1LY (tel 020 7436 7940, helplinesupport, where the events surrounding the death have been 020 7436 5881) Support for parents after stillbirth or neonatal deathparticularly distressing, or whose history or personality mayincrease the risk of prolonged grief. It is also important to give Winston’s Wish Clara Burgess Centre, Bayshill Road, Cheltenham GL50 3AW (telinformation about how to access bereavement services to those 01242 515157, helpline 0845 20 30 40 5) www.winstonswish.org.ukwho are not being contacted proactively. Support from Offers a range of services for bereaved children and young peoplevolunteers, provided with training, supervision, and back up including national helpline, information for family members,from suitably qualified professionals, has been shown to reduce resources, publications, and training for professionalsthe use of general practitioners’ services. Counselling tounselected groups shows little benefit. Opportunities to meet other bereaved people—Informal socialevents or more formal groups enable bereaved people to safelytest out the often disturbing feelings, questions, and thoughts Further readingthat they have with others facing similar circumstances. G Abrams R. When parents die. London: Routledge, 1999. There is no single intervention that meets the needs of all G Blackman N. Loss and learning disability. London: Worth Publishing, 2003.bereaved people, but there is an increasing range of resources G Couldrick A. Grief and bereavement: understanding children. Oxford:for them to draw on. Most hospices offer bereavement services. Sobell House Publications, 1988.Individual and telephone support provided by volunteers is the G Dyregrov A. Grief in children. London: Jessica Kingsley, 1990.main support strategy but groups and memorial services are G Klass D, Silverman PR, Nickman SL. Continuing bonds.also common. Many areas have branches of national self help Washington: Taylor and Francis, 1996. G Martin TL, Doka KJ. Men don’t cry . . . women do. Philadelphia:organisations. In addition counsellors, psychologists, social Taylor and Francis, 2000.workers, and community psychiatric nurses have the skills to G Parkes CM, Laungani P, Young B. Death and bereavement acrosswork with the minority of bereaved people whose grief is more cultures. London: Routledge, 1997.complicated by their personality or history of psychological or G Parkes CM, Relf M, Couldrick A. Counselling in terminal care andsocial problems. bereavement. Leicester: BPS Books, 1996. G Payne S, Horn S, Relf M. Loss and bereavement. Buckingham: Open University Press, 1999. G Stroebe MS, Stroebe W, Hansson RO. Handbook of bereavement: theory, research and intervention. Cambridge: Cambridge University Press, 1993. 77
  • 18 Complementary therapiesMichelle Kohn, Jane MaherDefinition of terms Disciplines in complementary and alternative medicine (as grouped by the House of Lords Science and TechnologyIn the past complementary therapies were described as Select Committee 6th Report, November 2000)“unconventional therapies” rarely used by orthodox medicalprofessionals. Now, with increased use and understanding of Group 1— Group 2— Group 3—alternativethese therapies, the term “complementary” has been adopted to professionally complementary disciplines organised therapiesindicate therapies that can work alongside and in conjunction alternativewith orthodox medical treatment. The term “integrated health therapiescare” is also used to describe the provision of orthodox and Acupuncture* Alexander technique 3a: Long establishedcomplementary treatments side by side as a package of care. Chiropractic Aromatherapy* traditional systems of The term “alternative therapies” indicates therapies used Herbal medicine Bach and other flower health care (includes essiac*) remedies Anthroposophicalinstead of orthodox medical treatments (BMA, 1993). In the Homoeopathy* Bodywork therapies medicine (includesUS, the former office of alternative medicine of the National Osteopathy including massage* iscador*)Institutes of Health coined the term “complementary and Counselling stress Ayurvedic medicinealternative medicine,” or CAM, to encompass both approaches. therapy* Chinese herbal medicine* Hypnotherapy* Eastern medicineThis term includes a much broader spectrum of medical and Reflexology* Traditional Chinese medicinetherapeutic approaches to those used in palliative care. Meditation* Naturopathy medicine In the context of palliative care, we have used the term Shiatsu* Healing* 3b: Other alternative“complementary” to refer to those therapies that are used Marharishi ayurvedic disciplinesalongside conventional health care. medicine Crystal therapy Nutritional medicine* DowsingClassification Yoga* IridologyTherapies can be classified in various ways. They may be grouped Kinesiologyby whether they have a direct physical application (such as *Therapies commonly used in palliative care.massage), a primarily psychological effect (such as visualisation),or whether they purport to have a pharmacological basis (such asdietary supplements). They can also be classified by application—that is, they can be thought of as a complete system of care (suchas homoeopathy), as useful techniques (such as aromatherapy),or as approaches to self help (such as meditation). More recently,the House of Lords select committee report provided aclassification, grouping therapies according to their professionalregulation and evidence base. In palliative care, patterns of provision vary widely.Therapies may be offered by individual practitioners based inthe hospital or community or in a designated setting whereseveral practitioners offer a wider range of therapies with amore comprehensive package of care. This may be within ahospital or hospice or in a separate location often set up byvoluntary organisations or self help and support groups.Patterns of useThe use of complementary therapies in palliative care isconsiderable and growing. Use by adults with cancer has beenestimated as between 7% and 64%. Users are likely to beyounger, female, and have higher education levels, income, and The Lynda Jackson Macmillan Centre at the Mount Vernon Cancer Centresocial class. Use is also associated with progression of the provides a drop-in information and support service. Appointments can bedisease, attendance at support groups, and previous use. made for complementary therapies, counselling, relaxation sessions, Provision of therapies is mainly in hospices and hospitals. educational sessions, and advice on benefits (photo reproduced with permission)Those most commonly on offer to patients are:G Touch therapies, such as aromatherapy, reflexology, and massageG Mind-body therapies such as relaxation and visualisationG AcupunctureG Healing and energy work, such as reiki, spiritual healing, and therapeutic touchG Nutritional and medicinal therapies, such as vitamins and dietary supplements, homoeopathy, and herbal remedies.78
  • Complementary therapies These services are often extended to both carers and staffand, encouragingly, most are free of charge. 350 No of services Cancer patients 300The role of complementary therapies CarersThe role of complementary therapies in palliative care is 250 Staffpresently undefined. Three basic models of how therapies 200might be used have been proposed. These are the 150G Humanistic model, where the aim is to provide a supportive 100 role by relieving symptoms, side effects of treatment, and improving quality of life 50G Holistic model, where the aim is to empower the user by giving 0 patients greater control over their health and quality of life ap nd ies rk es em apie nd es es wo pi pi pi er a ies r a s ap ra ra ra Radical holistic model, where self healing is the proposed th uch he alG er gy l t in he he he th na dic ive o er et tt rt at T aim and patients seek increased survival and possible cure. dy en en he tio e tiv tri M bo d Ot ea an d/ Cr ov in ul ng Considerable overlap may exist between the models—for M M ip ali nu an He mexample, patients may be given a treatment as a support and findit empowering. The radical model is usually advocated outside Number of services in the UK offering various complementary therapies tothe NHS setting as an alternative to orthodox treatment. patients with cancer, their carers, and staff (Macmillan Directory 2002)Why do patients seek complementary Why do people use/want complementary therapies?therapies? Orthodox medicine—“push” factors: G Failure to produce curative treatmentsKnowing why patients seek therapies is fundamental in G Adverse effects of orthodox medicine—for example, side effectsevaluating their use. Possible factors “pushing” patients away of chemotherapyfrom orthodox medicine and those “pulling” them towards G Lack of time with practitioner, loss of bedside skillscomplementary therapies can be identified. The provision of G Dissatisfaction with the technical approach G Fragmentation of care due to specialization“touch, talk, and time” and a “healing” environment seem to beparticularly important. Complementary therapies—“pull” factors: G Media reports of dramatic improvements produced by In 2002 the Department of Health commissioned further complementary therapiesresearch into the use of therapies from diagnosis through to G Belief that complementary therapies are naturalpalliative and terminal care. Drivers for use, perceived benefits, G Empowerment of patient through lifestyle and psychologicaland comparisons with orthodox medical care are also being equilibriumevaluated. G Focus on spiritual and emotional wellbeing G Provision by therapist of “touch, talk, and time” G Provision of a non-clinical “healing” environmentReferral and assessmentReferral Criteria for referral based on current evidencePatients and carers should be able to self refer or have a family G Relaxation G Insomniamember or health professional refer them for assessment for G To improve quality of life and G Paincomplementary therapies. wellbeing G Breathlessness All healthcare professionals working in palliative care are G For support G Nausea and vomitingadvised to be familiar with complementary therapies and, when G Tension, stress G Constipationappropriate, refer patients to further sources of information G Anxiety, fear, panic attacks G Hot flushesand services. Referral criteria are useful if health professionals G Low mood, depression G Muscular skeletal problems G Fatigue G Altered body imageare making referrals. They may also help to guide patientswhen they are self referring. When possible, it is recommendedthat there is a designated facilitator or coordinator to ensurecontinuity of care and to offer patients information to make Discussion should include:their own informed choice of treatment. G What the therapies are G What they meanAssessment G What is involved in the treatmentThe assessment G What side effects might occurAssessment ranges in different settings from screening for G What outcome can be hoped forcontraindications to a full assessment of physical, psychological,emotional, and spiritual factors affecting the patient.Contraindications and precautions for use of individual Clinical issues fall into three main groupstherapies should also be discussed.Contraindications and precautions 1. General contra- 2. Issues, which patients 3. Issues specific toMany questions arise in the treatment of patients with serious indications and with cancer may be facing patients with other illnesses precautions such as respiratory orillness and widespread disease. For example, a question often cardiac disease or thoseasked, and an issue where confusion arises, is whether massage with neurological conditionsspreads cancer. Based on current evidence, cancer is not acontraindication to receiving gentle massage, though massagetherapists are advised to be cautious over tumour sites. Contraindications to use of complementary therapies 79
  • ABC of palliative careDeep massage to any part of the body is not advisable for thosewith active cancer to avoid trauma and activation of theimmune response. The National Guidelines for the Use ofComplementary Therapies in Supportive and Palliative Care(produced by the Prince of Wales’s Foundation for IntegratedHealth and National Council for Hospice and SpecialistPalliative Care Services) detail contraindications andprecautions for the therapies most used in palliative care, inaddition to a wealth of information relevant to those setting upor maintaining services. Issues such as development andmanagement of the service, practice development, and theevidence base for therapies are examined.The therapiesThe table on page 81 outlines those therapies most commonly Acupuncture for pain around mastectomy scarused by patients in palliative care. The list is not exhaustive andexcludes the more peripheral therapies—for example, crystaltherapy. The choice of therapies depends on what the patienthopes to gain. Some may prefer to learn a relaxation techniqueto have a tool for further self care, some may enjoy a yoga classwith the camaraderie of a group activity, and others mightenjoy a more passive “one on one” approach and select a touchtherapy such as aromatherapy.Types of evidenceAlthough the scientific evidence for complementary therapies issparse, this does not mean they are ineffective. Rather it reflectsthe limited resources that have been committed to research andthat many clinical trials have been of poor methodologicalquality. The factors that have hindered research into theeffectiveness of complementary therapies are well documented,as are the difficulties of conducting research on people with alife threatening condition or advanced and progressive illness. Evidence has been gathered from randomised controlledtrials, prospective studies with a comparison group, comparisongroup studies, cross sectional studies, professional consensus,and anecdotes from patients. It is clear from numerous surveysand service evaluations that patients do value complementarytherapies as an integral part of their care. More research fromvarious perspectives and methodological approaches is needed.Evaluating complementary therapiesAlthough the randomised controlled trial is the method ofchoice for evaluating a simple intervention, it may beinappropriate for researching certain complex therapies as thenon-specific effects may be integral to the therapies rather thana confounding factor. Where randomisation is involved, there isevidence that “non-specific effects” are reduced if theintervention is not thought to be effective, either by thepractitioner or the patient. Finding an appropriate placebo ischallenging for many of these interventions—for example,using a “control” for massage. A therapeutic relationship? “The consultation, or last hope” by Thomas In designing trials, methodologists need a clear objective of Rowlandson, 1808. Reproduced from Emery A, Emery M. Medicine and art.what the trial aims to achieve—appropriate questions must be RSM Press: London, 2002asked, which depend on shared language and understandingthe nature of the therapy. Defining realistic outcomes andusing appropriate measuring tools are key in achieving results.For example, patients may still experience pain but feel better The two cartoons in this chapter are courtesy of Quack.able to cope. Thus symptoms alone may miss the perceivedvalue of the intervention. There may also be additionalbenefits, such as enjoying a greater sense of “wellness,” whichtraditional outcome measures might miss. Study design shouldappropriately reflect the benefits expressed by patients, using amixture of qualitative and quantitative methods.80
  • Complementary therapiesComplementary therapiesTouch therapies The evidence base for use of the touch therapies isAromatherapy growing. A wide range of uses includes helping toMany plant species contain essential oils, which give them their distinctive smell. promote relaxation, alleviate anxiety, reduceThese oils can be condensed by a distillation process to create a concentrated depression, reduce pain, reduce nausea, alleviatearomatic solution. Practitioners believe that essential oils can have particular symptoms such as breathlessness, alleviate side effectsphysiological or psychological effects of chemotherapy, improve sleep pattern, reduce stress and tension, reduce psychological distress, provideReflexology emotional support, improve wellbeing and quality ofReflexology has its roots in traditional Chinese medicine. Practitioners apply life, encourage acceptance of altered body imagepressure to specific zones on the soles and tops of the feet to assess the diseasestate of the patient and also to improve health. Massaging the points is thought tounblock energy pathways and restore normal energy flowMassageMassage is a generic term for various techniques that involve touching, pressing,or kneading the surfaces of the body to promote mental and physical relaxationNutritional and medicinalHerbal remedies Hundreds of herbal remedies are purported to havePlant products have been used for centuries and many Western allopathic benefits in palliative care, including anticancermedicines, including oncology drugs, are derived from plants. Plants contain benefits as well as more general immune enhancingmany potentially effective compounds and determining which are beneficial effects. Most of them do not have proven specificand which are harmful is a challenge. Moreover, the constituents may work benefits but this could be due to the quality of thesynergistically to provide the effects trials conducted. Possible interactions with activeHomoeopathy treatment and side effects necessitate caution inHomoeopathy is based on the ancient principle that “like can treat like.” recommending their use. Careful discussion with aHomoeopathic remedies are prepared from a mother tincture, which is diluted knowledgeable health professional is recommended.down in successive steps. At each step the solution is given a vigorous shake, The evidence of clinical effectiveness of homoeopathyand homoeopaths believe that the power of the diluted solution to heal is is mixed and scientific research into homoeopathy inconferred during these successive shakes. cancer is in its infancy. Nevertheless, homoeopathy is used by patients in palliative care, and there is evidence that they find the approach helpful. The best available evidence suggests effectiveness of use for fatigue, hot flushes, pain including joint pain and muscle spasm, anxiety and stress, depression, quality of life including mood disturbance, radiotherapy, skin reactions, and ileus after surgeryHealing and energy workReiki The best available evidence suggests that reiki andReiki is a method of healing that was rediscovered in Japan in the 1800s. spiritual healing may contribute to pain relief,The energy is known as qi and can be channelled from its originating promote relaxation, to improve sleep patterns, reducesource by the reiki practitioner and passed on to a recipient tension, stress and anxiety, to provide emotionalSpiritual healing and/or spiritual support, contribute to a sense ofSpiritual healing, often referred to simply as healing, involves channeling wellbeing, reduce side effects of chemotherapy andof healing energies through the healer to the patient. It is a supportive radiotherapy, and support the patient in the dyingapproach, which may involve light touch or no touch at all, depending processon the recipient’s conditions and wishesMind-body therapiesHypnotherapy/hypnosis A large body of evidence exists for the use of clinicalThe aim of these therapies is to alter the quality of an individual’s thoughts hypnosis in supportive and palliative care. It may beand thought processes. This could lead to psychological and possibly useful to enhance the immune response, as anphysiological change. As well as simple relaxation there is classical meditation adjunct to more conventional forms of psychotherapy,involving various techniques to enhance coping ability, to enhance recovery fromVisualisation surgery, to reduce nausea related to chemotherapy, toPatients are said to be able to overcome physical and emotional problems by increase tolerance of scanning and radiotherapyimagining positive images and desired outcomes to specific situations, either procedures, to reduce pain, in mood disturbance andalone or helped by a practitioner in a process known as guided imagery emotional and psychological distress, to enhance quality of life, to reduce anxiety and depressionOthers Current evidence supports the use of acupuncture andAcupuncture acupressure in palliative care for the treatment ofAcupuncture has its roots in traditional Chinese medicine and is therefore part nausea and vomiting induced by chemotherapy andof a system involving multiple therapeutic interventions such as diet, after surgery, with high level evidence emerging formanipulation, meditation, and herbal medicine. The aim is to restore the acute pain and xerostomia. Despite limited scientificenergy balance and health. The therapeutic technique involves the insertion evidence, there are also data to support its use inof fine needles under the skin and underlying tissues at specific points for palliative care for pain associated with diseases othertherapeutic or preventative purposes than cancer, breathlessness, radiation induced rectitis, hiccups, hot flushes, angina, and AIDS 81
  • ABC of palliative careRegulation and training of therapists Do’s and don’ts—a checklist for patientsMany health professionals are choosing to train as Do . . .complementary therapists. They most commonly train in G Establish what the therapy is intended to achieveacupuncture and the touch therapies. Many complementary G Use a therapist who has a recognised qualification, belongs to atherapists, however, do not have any biomedical training professional body, and has insurance. Ask if the person isbeyond their therapies. experienced and/or trained in treating patients with your condition With the exception of osteopaths and chiropractors, who are G Ask for an informal chat with the therapist and/or for anyregulated by law, most complementary therapy practice is either leaflets or literature supplied by them G Find out what the fees are (if any) and what these covervoluntarily self regulated or unregulated. In general, therapists G Talk to family, friends, and health professionals about your plansrecognise the need for self regulation, both to enhance their G Consult any relevant fact sheets/telephone helplines provided byprofessional credibility and to protect the public. The therapies reputable support organisations for patientsused mostly by patients in palliative care—aromatherapy, G Find out what is available on the NHS, in treatment centres youreflexology, and massage—are not statutorily regulated and are may already be using or through your family doctor at thefragmented. Many of the complementary professions are working medical centre. Wherever you are, ask about the availability oftowards common standards of education and training and the the full range of complementary therapy servicesaccreditation of professional courses. In 2001 the Department of Don’t . . . G Abandon proved conventional treatmentsHealth recommended that any accreditation board is completely G Be misled by promises or suggestions of cures or respond to aindependent of the institutions to be accredited. “hard sell” that offers simple solutions The Qualifications and Curriculum Authority (QCA) in G Rely on a single source of information as it may be inaccurateEngland provides details of external awarding bodies on its G Use a therapist who cannot refer you to the relevant researchwebsite (www.qca.org.uk). G Feel pressured to buy expensive books, videos, nutritional supplements, or herbal preparations as part of a therapy G Be afraid to ask for references and credentialsSources of information G Accept treatment from someone who makes you feel uncomfortable in any wayMost research in the UK has focused on touch and mind-bodytherapies. Cancer organisations and charities have informationon these therapies. There is little information available,however, on medicinal and nutritional approaches such asvitamin use and dietary supplements. Patients do use theseproducts, often without the knowledge of their healthprofessionals. Their use may be intended as complementarybut the effects may not be. Further attention needs to be givento this issue with consideration of possible drug interactionsand interference with orthodox treatment and educatingpatients to make informed decisions about their use. There is an overwhelming amount of information available,much of which is inaccurate. Health professionals and patientswanting information about individual therapies and localresources are advised to consult reliable sources of informationsuch as: Other useful sources of informationG The Research Council for Complementary Medicine—a CAM Publications and cancer database is in development (sponsored by the G Kohn M. Complementary therapies in cancer care—abridged report of a DoH). This will be available both for professionals and study produced for Macmillan Cancer Relief. London: Macmillan patients with clinical appraisals for each therapy Cancer Relief (UK), 1999. G Directory of complementary therapy services in UK cancer care. London:G Websites/helplines/brochures from cancer organisations Macmillan Cancer Relief (UK), 2002. such as the NCRI, Cancerbackup, Cancer Research UK, or G National guidelines for the use of complementary therapies in supportive Macmillan Cancer Relief and palliative care. London: Prince of Wales’s Foundation forG International websites—for example, the NIH’s NCCAM and Integrated Health, National Council for Hospice and Specialist the NCI’s OCCAM in the US Palliative Care Services, 2003. G House of Lords Select Committee on Science and Technology.G Voluntary sector organisations and self help and support Complementary and alternative medicine. London: Stationery Office, groups 2000. (HL Paper 123)G Health professionals such as general practitioners and Websites Macmillan and Marie Curie nurses G National Cancer Institute’s Office of Cancer Complementary andG Local cancer units/centres and hospices Alternative Medicine (OCCAM), USA. www3.cancer.gov/occamG Cancer information and support centres G National Center for Complementary and Alternative MedicineG The National Institute for Clinical Excellence (NICE); as part (NCCAM), at the National Institutes of Health, USA. of the Guidance on Cancer Services—Improving Supportive http://nccam.nih.gov G American Cancer Society. and Palliative Care for Adults with Cancer (2004), NICE have recommended that information on complementary therapy www.cancer.org/docroot/home/index.asp G CancerHelp UK. www.cancerhelp.org.uk resources be made available for each local cancer network. G Macmillan Cancer Relief. www.macmillan.org.uk G Bristol Cancer Help Centre. www.bristolcancerhelp.org For the future, it is hoped that with appropriate sources of G National Cancer Research Institute (NCRI), Complementaryinformation and provision of services, backed up by appropriate Therapies Clinical Studies Development Group. www.ncri.org.ukresearch, complementary therapies will become an integral part G The Prince’s Foundation for Integrated Health. www.fihealth.org.ukof palliative care.82
  • Indexaciclovir 20 antifungal drugs 19acupressure 26 anti-inflammatories 63acupuncture 9, 16, 25, 81 see also non-steroidal anti-inflammatory drugs (NSAIDs) nausea and vomiting control 26 antimuscarinics 16 pain control 80 antipsychotics 38addiction, opioid risk 6–7 antitussives 15, 64adjuvant drugs 5, 8, 9 antiviral treatment 20adolescents 76 anxiety 36–9advance directives 69 bereavement 74advanced care planning 68, 73 carers 56, 70advice for carers 57 children 50agitation 50 clinical features 36, 37airway obstruction 16, 63 coping with 14alfentanil 6, 45, 61 dyspnoea 65allodynia 8 outcome 39alternative therapies 78 psychotropic drugs 38 see also complementary therapies anxiolytics 38, 45, 60amitriptyline 8, 9 appetite stimulants 23amphotericin B 19 aromatherapy 81amputations 62 arterial erosion 47amyotrophic lateral sclerosis 64–5 aspergillosis 63anabolic steroids 23 assessment, thoughtful 1anaemia 59 attendance allowance form 69–70anaesthetic block 7 autonomic failure 26analgesia/analgesics 4 autonomy 52 adjuvant 5, 8, 9, 49, 61 administration route 44, 45 baclofen 49 chest wall pain 16 bacterial infections, oral 19–20 children 49–50 bacterial toxin absorption 27 complications 12 -agonists 63 invasive techniques 10–11 -blockers 38 last 48 hours 44, 45 behavioural therapy 58 multimodal 11 benzodiazepines 38 pleural pain 16 breathlessness management 14, 45 topical 18 children 50analgesic ladder (WHO) 4 haemoptysis 16 childhood pain 49 last 48 hours 46, 47 end-stage renal disease 61, 62 muscle spasm pain 49anger 53 respiratory disease 64angiotensin converting enzyme (ACE) inhibitors 60 superior vena caval obstruction 41angiotensin receptor blocking agents 60 bereavement 47, 74–7anguish, terminal 37 adjustment 74angular cheilitis 19 counselling 77anorexia 21, 22, 23, 63 death of child 51antibiotics 15, 63 HIV/AIDS 67anticholinergics 34, 63 meeting other bereaved people 77anticonvulsants 5, 8, 9 support 54, 55, 77 last 48 hours 44 vulnerable groups 76 withdrawal 46 bisphosphonates 10, 40–1antidepressants 38 skeletal morbidity reduction 43 see also selective serotonin reuptake inhibitors (SSRIs); bone tricyclic antidepressants fractures 43antiemetic drugs 25–6 internal stabilisation 10 children 50 pain 45 last 48 hours 44, 46 bone metastasesantiepileptic drugs 50 fractures 43 83
  • Indexbone metastases (contd.) development 48 hypercalcaemia 40 feeding 50 pain control 7, 10, 16 nausea and vomiting 50bowel lumen compression 31 opioid use 49brain tumours 49, 50 pain 48, 49–50breaking bad news 54 symptom assessment 48breathlessness 13–15 symptom management 49 cardiac disease 60 chlorhexidine gluconate 17, 18 last 48 hours 45–6 chlorhexidine mouthwash 17 management 63 chronic obstructive pulmonary disease 71 respiratory disease 62 clinical nurse specialists 72bronchial carcinoma 41 clonazepam 46bronchial stents 16 clonidine 11bronchodilators 15, 63 co-analgesics 8bronchopulmonary aspergillosis 63 codeine 15, 30–1bronchospasm 15 coeliac plexus nerve block 11bulk-forming agents 30 cognitive behaviour therapy 58bupivacaine 11, 15 cognitive impairment 37buprenorphine 6, 33, 61 HIV/AIDS 66burnout, healthcare professionals 57 cold sores 20 collusion 53cachexia 21–4 colorectal cancer 31 cardiac disease 60 communication 52–5 management 22–4 barriers 52–3calciphylaxis 62 with children 53calcium gene-related peptide (CGRP) antagonists 12 chronic non-malignant disease 59cancer distancing tactics 54 autonomic failure 26 dying patients 69 bronchial carcinoma 41 facilities 55 colorectal 31 families 50 end of life care 71 improving 54–5 food intake 22–3 interprofessional 54, 55 massage for patients 79–80 organisational problems 54 mediastinal tumour 41 community palliative care 68–73 see also bone metastases; cachexia; metastases complementary therapies 78–82cancer pain assessment 79–80 control 4–7 classification 78 opioids 6 evaluation 80candidosis, oral 19 evidence for 80captopril 60 patterns of use 78–9carbamazepine 9 therapist regulation/training 82cardiac disease 71 types 81 advanced 59–60 computed tomography (CT) 32 management 60 confidentiality issues 52cardiovascular disease 61 conflict 55care, continuity 55 confusion 36 out of hours 70 clinical features 37care homes 56, 71 hypercalcaemia 40carers 56–8 last 48 hours 46 anxiety 70 management 38 care 2 outcome 39 choice 68 prevention 38 healthcare professionals 57–8 psychotropic drugs 38–9 informal 56 constipation 29–30 information for 57 consultations, joint with patient and family 57 last 48 hours 44, 47 contrast radiography, intestinal obstruction 32 needs 69 cordotomy, percutaneous 16 psychosocial support 57 corticosteroids support 38, 47, 56–7, 70–1 children 49carotid artery erosion 47 cough suppression 15central venous catheters 33 hypercalcaemia 40chemoreceptor trigger zone (CTZ) 25–6, 27, 28 intestinal obstruction 34chemotherapy 26, 28 respiratory disease 63chest infections 15 stridor treatment 16chest physiotherapy 15 superior vena caval obstruction 41chest wall pain 16 cough 15–16Child Death Helpline 51 respiratory disease 62, 63children 48–51 cough suppressants 15, 16 bereavement 76 counselling care at home 48 bereavement 77 communication 53 cardiac disease 61 coping strategies 49 dying patients 69 death 48 healthcare professionals 5884
  • IndexCOX 2 NSAIDs 9 eicosapentaenoic acid 23crying, pathological 65 elderly people 76cyclizine 25, 27, 34, 46 embarrassment 53 raised intracranial pressure 50 emergencies 40–3cytokines, proinflammatory 22 advice 69dantron 30 last 48 hours 46–7 emotions, grief expression 75, 76death end of life care 56, 62 bereaved children 76 care homes 71 children 48 home care 56, 65, 68–9 communication 52, 53 optimising 72–3 end-stage renal failure 62 priorities 68 at home 56, 65 endoscopy, intestinal obstruction 32 imminent 44–7 end-stage renal disease 61–2 notification 72 enemas 30 place of 56, 68 energy expenditure, cachexia 22 presence at 77 energy work 81death certificates 72 epidural infusion 11dehydration 27–8 European Association for Palliative Care (EAPC) guidelines 8delirium 37, 38 episodic pain 9dementia 71 exercise programmes, respiratory disease 63 HIV/AIDS 66denial 53 familydental caries 19 bereavement 51dental problems 20 coping strategies 49dentures death of a child 48 hygiene 17–18, 19 joint consultations 57 problems 20 last 48 hours 44, 47dependence, opioid risk 6–7 support 47, 50, 56–7, 70–1depression 36–9 fasciculations 65 clinical features 36, 37 fatigue 21, 23 informal carers 56 informal carers 56 management 37–8 feeding/food intake outcome 39 amyotrophic lateral sclerosis 64 prevention 37–8 cancer patients 22–3 psychotropic drugs 38 cardiac disease 60dexamethasone 9 children 50 stridor treatment 16 fentanyl 6, 33, 61 superior vena caval obstruction 41 fish oils 23, 60diabetes mellitus fluconazole 19 autonomic failure 26 fractures, pathological 43 end-stage renal disease 61 friends, support 56–7, 70dialysis 61, 62 funding 69–70diamorphine funerals 77 dosage 11 fungal infections, oral 19 last 48 hours 45, 47 subcutaneous 14 gabapentin 5, 9diarrhoea 29, 30–1 gastric stasis 26–7diazepam 45, 46 gastrointestinal obstruction 27–8, 29 grand mal fit 50 gastrostomy 50 respiratory disease 64 general practitioners 68, 69, 70, 71diclofenac 9 glyceryl trinitrate 61digoxin 60 glycopyrronium 34, 46dimethicone 27 glycopyrronium hydrobromide 16discharge planning 54, 55 gold standards framework (GSF) 72distancing tactics 54 grand mal fit 50distension-secretion-motor hyperactivity 31, 32 grief 74–6district nurses 57, 68, 70 complicated 75–6, 77diuretics 60 poor adjustment 75docusate 30 support 77domperidone 46 grief work 58drooling 65dry mouth 18, 34, 35 H2 blockers 27dying haematemesis 47 patient needs 69–71 haemoptysis 16, 47 see also death; end of life care haemorrhage 47dysarthria 65 hairy leukoplakia 20dysphagia 64 halitosis 18–19dyspnoea 41, 65 hallucinations 46 haloperidol 25, 27, 34, 38, 39education children 50 children 50 opioid toxicity management 46 interprofessional 55 headache, children 49–50 85
  • Indexhealing 81 Kaposi’s sarcoma 20healthcare professionals ketamine 11 caring 57–8 ketoconazole 19 communication 52–5 job satisfaction 57–8 lactulose 30 mental health improvement 58 laminectomy 42–3 referrals to complementary therapy 79 larynx, obstruction 16heart failure see cardiac disease laser therapy, haemoptysis 16herbal medicine 9, 81 laughing, pathological 65herpes simplex virus (HSV) 20 laxatives 14, 29–30highly active antiretroviral therapy (HAART) 66 childhood pain 49HIV/AIDS 65–7 learning difficulties 76 autonomic failure 26 legal issues 72 oral problems 20 legs, oedema 59home, dying in 56, 65, 68–9 levomepromazine 25, 34home care 68–9, 73 lidocaine patches 12 optimising 72–3 lignocaine 15homoeopathy 9, 81 liver metastases 10homosexual men 66–7 Liverpool care pathway (LCP) 44–7, 73hope, maintaining 53 living wills 69hospice at home 72 local anaestheticshospices 2 nebulised 15 bereavement services 77 oral pain 18 complementary therapies 78 loperamide 30 outreach 72 lorazepamhospital admission amyotrophic lateral sclerosis 65 cardiac disease 60 dyspnoea 65 preterminal phase 62 respiratory disease 64hospitals 56 loss, emotional 74 community 71 lung function, optimising 62–3 complementary therapies 78 lymphoma 41 private 71hydralazine 60 Macmillan nurses 72hydration, intestinal obstruction 34–5 macrogols 30hydromorphone 6, 61 magnesium salts 305-hydroxytryptamine (5-HT3) antagonists 28 malabsorption 31hyoscine butylbromide 27, 34, 46 malignant intestinal obstruction (MIO) 31, 32, 33hyoscine hydrobromide 16, 25, 34, 46 Marie Curie nurses 47, 72hypercalcaemia 40–1 massage 79–80, 81hyperparathyroidism 40 meaning of illness 2hypnotherapy/hypnosis 81 mediastinal tumour 41hypodermoclysis 35 medicationshypotension, postural 59 last 48 hours 44hypoventilation, chronic nocturnal 65 symptom control 1hypoxaemia 13–14, 62 medroxyprogesterone 23 memorial services 77ibuprofen 23, 63 mental health problems, healthcare professionals 58illness, meaning of 2 mesothelioma 16immigrants 66–7 metabolic rate, increase in cachexia 22infections metastases chest 15 liver 10 opportunistic 66 pain control 16 oral 19–20 spinal cord compression 42influenza vaccination 61 see also bone metastasesinformation methadone 10 bereavement 77 methotrexate 50 complementary therapies 82 methotrimeprazine 50 dying patients 69 metoclopramide 26, 34injecting drug users 66–7 miconazole 19insulin resistance 22 midazolam 11, 39, 46, 47interpersonal therapy 58 amyotrophic lateral sclerosis 65interprofessional issues, communication 54, 55 grand mal fit 50intestinal epithelial damage 31 mind-body therapies 81intestinal obstruction 31–5 mirtazapine 38 malignant 31, 32, 33 mood disturbance 4 management 32–3 morphine 5–6intracranial pressure, raised 49, 50 amyotrophic lateral sclerosis 65intraluminal hypertension 31 breathlessness management 45intrathecal infusion 11 cough suppression 15invasive analgesia techniques 10–11 dosage 5, 14, 15ipfosfamide 28 dyspnoea 65itraconazole 19 end-stage renal failure 61job satisfaction 57–8 last 48 hours 4586
  • Index maintenance dose 5–6 spinal delivery 11 nebulised 15 superior vena caval obstruction 41 superior vena caval obstruction 41 symptom control 1motor neurone disease 64–5 tolerance 6, 7, 12mourning 74–5 toxicity 7, 12, 14, 46, 60, 61 culturally-determined 76 use 4mouth, dry 18 withdrawal 12mucolytics 15 oral care, vomiting 28mucous secretions 65 oral discomfort/pain 18multidisciplinary teams 2, 72 oral health 17–20 communication 54 oral hydration 35muscle cramps 65 oral hygiene 17–18, 19muscle spasm oral infections 19–20 diazepam 45 organ failure 71 pain 49 out of hours care 70muscle wasting 22 oxycodone 6, 45, 60 cardiac failure 59 oxygen, breathlessness management 13–14, 45muscle weakness 64myelopathy 42 pain acupuncture in control 80nasogastric intubation 28, 50 adjuvant drugs 8nausea and vomiting 25–8, 29 amyotrophic lateral sclerosis 65 children 50 assessment 4 drug-induced 28 breakthrough 5, 9, 10, 45 intestinal obstruction 33, 34 cardiac disease 59 last 48 hours 46 chest wall 16 symptom management 25–6 in children 48, 49–50 syndromes 26–8 colicky 34nebulised drugs 14–15 control 4–7neurodegenerative disorders 50 control in last 48 hours 45neurodestructive techniques 11 dialysis 61–2neurological disease 71 difficult 8–12neuropathic pain 5, 8–9, 10 episodic 9–10 children 49 HIV/AIDS 66 dialysis patients 61 incident 9, 10NHS End of Life Care Programme 73 interventional techniques 10NHS Modernisation Agency 73 intestinal obstruction 33–4N-methyl-d-aspartate (NMDA) subtype selective agents 12 mechanisms 4non-malignant disease muscle spasm 49 chronic 59–67 non-pharmacological control 4, 9 end of life care 71 oral 18 oral problems 20 pleural 16non-opioids, use 4 severe 5–6non-steroidal anti-inflammatory drugs (NSAIDs) 9, 23 severity 4, 49 bone metastases 10 total 8 childhood pain 49 see also neuropathic pain last 48 hours 45 pain specialists 11 respiratory disease 63 palliative carenumbness 74 components 1–2nutritional therapies 81 delivery 2nystatin 19 palliative care nurses 57, 58 pancreatic cancer 31octreotide 27, 31, 34 pancreatic enzyme supplementation 31omeprazole 23 panic, coping with 14opioids 5–6 parents see family accumulation in renal dysfunction 6 Parkinson’s disease, autonomic failure 26 addiction 6–7 patients administration routes 5, 6, 28 autonomy 52 adverse effects 6, 7 care 2 bone metastases 10 choice 68 breathlessness management 14, 45 concerns 52 cardiac disease 60 joint consultations 57 children 49 last 48 hours 47 constipation 29 needs 69–71 cough suppression 15 out of hours care 70 dependence 6–7 support 47 dosage 14 time with 52 end-stage renal failure 61 uncertainty 53 haemoptysis 16 peptic ulcer prophylaxis 23 last 48 hours 45 percutaneous endoscopic gastrostomy (PEG) tube 27, 64 poor response 8 periodontal disease 19, 20 respiratory disease 64 peripheral vascular disease 62 responsiveness 7 phenobarbitone 47 87
  • Indexpholcodeine 15 secretions, airway 63, 65plaque control 17 sedation 38, 39platinum 28 last 48 hours 44play, children 50 respiratory disease 64pleural pain 16 seizures 46, 50pneumococcal vaccination 61 selective serotonin reuptake inhibitors (SSRIs) 5, 38poloxamer 30 self care 72polyethylene glycol 30 senna 30prednisolone 63 shock 74pregabalin 12 social services 69–70preterminal phase 62 sodium hypochlorite 18primary care teams 55, 68, 69, 70, 73 spasticity 65privacy, lack of 52 specialisms 2, 11prochlorperazine 46 spinal cord compression 41–3progestogens 23 spinal route of drug delivery 11, 12prokinetic drugs 27 spinal stabilisation 43proteolysis inducing factor (PIF) 22 spiritual concerns/needs 1, 2, 37, 70proton pump inhibitors 27 bereavement 74psychiatric morbidity, healthcare professionals 57 spiritual healing 81psychiatric referral 37 stentspsychological distress intestinal obstruction 33 carers 56 superior vena caval obstruction 41 healthcare professionals 58 tracheal/bronchial 16psychological services 72 steroids 9 for dying patients 69 stimulation therapies 9psychological techniques of pain control 9 stomach aspiration 27psycho-oncology services 72 stomatitis, denture 19psychosocial concerns 1 stress HIV/AIDS 66–7 communication 54, 55psychosocial distress 8 healthcare professionals 57–8psychosocial needs 2 stress hormones 22psychosocial support 57, 69 stridor 16psychotropic drugs 38–9 suffering, alleviation 2 superior vena caval obstruction 41quality of life 24, 60, 62 suppositories 30, 46 HIV/AIDS 66 surgical intervention intestinal obstruction 32–3radiology spinal cord compression 42–3 intestinal obstruction 32 symptoms, alleviation 1 spinal cord compression 42 syringe drivers 6, 33radiotherapy chest wall pain 16 taste disturbance 18 fractures 43 TENS (transcutaneous electrical nerve stimulation) 9, 16 haemoptysis 16 nausea and vomiting control 26 pain control 7 terminal anguish 37 pleural pain 16 terminal care 54, 55 spinal cord compression 42–3 amyotrophic lateral sclerosis 65 stridor treatment 16 HIV/AIDS 67ramapril 60 last 48 hours 44–7record keeping 55 theophyllines 63referral 54 tolerance, opioid risk 6, 7 community care 70 tooth brushing 17 complementary therapies 79 total parenteral nutrition (TPN) 35reflexology 81 touch therapies 81reiki 81 tracheal stents 16renal disease, end-stage 61–2 tricyclic antidepressants 5, 8, 9, 38renal failure 71renal replacement therapy 61 vasoactive intestinal polypeptide (VIP) 31renal transplantation 61 venlafaxine 5research 3 ventilatory drive, impaired 62, 64resource allocation 2 venting procedures, intestinal obstruction 33respiration, noisy 46 vertebral stabilisation 43respiratory depression, opioids 14 viral infections, oral 20respiratory disease 62–4 visualisation therapy 81respiratory problems 13–16 vomiting see nausea and vomitingrespite admission 72 vomiting centre (VC) 25, 27restlessness, last 48 hours 46 wheeze, inspiratory 16 WHO analgesic ladder 4saline, nebulised 45 childhood pain 49Saunders, Dame Cecily 2, 3 end-stage renal disease 61, 62scopolamine 33screening instruments for psychiatric xerostomia 18 disorders 37 see also dry mouth88