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Palliative Care Notes
Christiane Riedinger, Spring 2015
TOC
● Ethics of palliative care end of life issues, autonomy
● Law of palliative care incl. GMC, BMA, RC guidelines
● Clinical Problems
○ Pain
○ GI
○ Cardiorespiratory
○ Neurological
○ Psychological
● Natural histories of life-limiting conditions
○ Cancer
○ Cardiac
○ Pulmonary
○ Renal, liver failure, ...
● Practical procedures
● Theories of bereavement, social model of grief
● Multi-disciplinary approach
General Considerations
Identifying Patients for Palliative Care
● Identifying patients for palliative care
○ Surprise question: Would I be surprised if this patient died?
○ Prognostication:
■ Indicators of decline, e.g. performance status (ECOG, Karnofsky), speed of
decline
■ Prognostic tools, e.g. PiPs-A/B prognosticator
■ Clinical indicators: deterioration despite optimal Rx, complex difficult
symptoms, bedbound, unable to swallow, drowsy/unconscious, only sips
water
● Why does it matter?
○ Patients: preparation, choice in how to spend limited time, planning (will, care of
children), good-byes, sorrys, thank-yous, preference of place of care and death
○ Professionals: planning intervention choices, ceilings of treatment, informing
appropriate services, catering to patient’s wishes
Advance Care Planning - good for CCS
● Barriers
○ Doctors: prognostic uncertainty, fear of upsetting patient, desire to maintain hope, limited collaboration between
1* and 2* care, lack of time
○ Patient: expectation that clinicians will initiate, denial, feeling of irrelevance, taboos
● Take responsibility for early ACP being offered (not just DNAR!)
● Content of discussion in anticipation of loss of decision-making capacity
○ Shared understanding of the illness
○ Prognosis
○ Values
○ Personal goals of care
○ Specific preferences for future care (place, treatment, resus)
○ Respect wishes of those who do not wish to talk
● Method: Phases - “have you any concerns for the future”, “keeping you in control”, “avoiding crises”, “helping to support
family”; select location, gather information first, give appropriate information
● Outcomes
○ Statement of wishes and preferences documented in notes
○ Advance decision to refuse treatment arranged
○ Lasting Power of Attorney arranged
● Take responsibility for communicating outcome: discharge letter
Disease Trajectories
● Cancer: horizontal, i.e. maintenance of health with fast decay and steep
decline towards death
● Chronic illness with exacerbations: steady decline with relapsing-
remitting episodes and final deterioration leading to death
● Chronic illness with gradual decline, e.g. dementia
● Patients with cancer most likely to die at home or in hospices
● Patients with dementia most likely to die in a care home
● Patients with cardiac or respiratory illness most likely to die in hospitals
Prognostication: Communicating Prognosis
● Never give a number
● Don’t say it’s impossible to tell
● Use: Days, weeks, months, years
● Guided by rate of chance, if day-by-day change then days is the most likely
prognosis
● Be open about the uncertainty
● Be realistic: some surprise us, shorter
● Be hopeful: some surprise us, longer
● Rainy day thinking: hope for the best, prepare for the worst
Locations at the End of Life
● Wish for death at home
becomes smaller the more the
illness progresses
● Causes of problems at home:
carer fatigue, difficult symptoms
● Discharging home to die:
○ Pt NOT medically fit for
discharge
○ Act fast or they may
become too unwell to
travel
○ Discharge planning nurse
specialist liaises with
district nurse to arrange
NNA (nursing needs
assessment) and fast-
track funding
○ Anticipatory prescribing:
just-in-case box
○ Call GP
Gold-Standards Framework
● NFP organisation enabling optimal quality of end-of-life care
● 7 Key tasks: Communication, coordination of care, control of symptoms
and on-going assessment, continuing support, continued learning, carer
and family support, care in the final days
● A ALL = prognosis >years
● B BENEFITS = months, unstable or advanced disease
● C CONTINUING CARE = weeks, deteriorating
Amber Care Bundle: Assess, Mx, Best practice, Engagement, uncertain
recovery
● D DAYS = terminal care
● After-care = care after death
Practical Aspects of End of Life Care
● Diagnose dying process
● Assessment (on-going!)
● Management (including anticipatory prescribing)
● Referral to Specialist Palliative Care Services
● Symptom control in the terminal phase
● Syringe drivers
● Communication (most complaints are about poor communication)
● Bereavement
● A good death:
○ Control: know when it is coming, pain relief, symptom control, choice
of location and people present, dignity
○ Preparation: advance directives, will, say good-byes, easier to let go
○ Access to information and support
Last 48 Hours
● Consider patient’s wishes (ideally long before the last 48h): wants to go home? hospice a possibility?
● Alert out of hours providers
● Ensure DNAR in place
● Be sensitive to different religious and cultural approaches
● Assess patient needs (including psychological)
● Keep examinations and investigations to a minimum (only check or abnormalities if it has been decided
to treat them, otherwise don’t check)
● Review medication, stop all unnecessary medications (and anything PO), comfort is a priority
● Assure appropriate nursing care
● Treat specific symptoms
● Use “just in case box”: diamorphine subcut 2.5-5mg/4h, midazolam 2.5-5mg/4h, haloperidol 1-2.5
mg/8h, hyoscine hydrobromide 0.4mg/8h
● “Death rattle” (due to excessive respiratory secretions), Cheynes-Stokes respiration (cyclical)
○ Reassure relatives
○ Treat prophylactically:
■ Non-sedative - glycopyrronium 200ug sc stat, review after 1h, 4h, may require syringe driver
■ Sedative: hyoscine HBr 400ug /4-8h SC or via transdermal patch
Key Drugs / “Just in Case” Box
● Analgesia PAIN
○ Diamorphine, morphine, oxycodone, alfentanil
○ Can continue patches, but consider driver (can be in tandem) with PRN
○ Convert regular opioids to subcut /24h
■ Subcut diamorphine 3x as potent as oral
■ Calculate breakthrough prn dose: ⅙ of total
○ Consider co-analgesics
● Sedative / anxiolytic / muscle relaxant AGITATION
○ Midazolam
● Anti-emetic N&V
○ Cyclizine, haloperidol, levomepromazine
○ If already on one, can continue and prescribe 2nd prn
○ Less prevalent in terminal vs palliative phase
● Anticholinergic SECRETIONS
○ Glycopyrronium, hyoscine hydrobromide
Syringe Driver
● CSCI = continuous sub-cutaneous infusion,
example 40mg diamorphine /24h in CSCI plus 15mg diamorphine SC
every 2-4h prn
● Prescribe prospectively if no regular opioids or antiemetics
● Consider starting if pt has needed >2-3 prn injections /24h
● Check drug combinations for compatibility
● Check appropriate diluent
● Continuous reassessment and dosage change if required
● Seek help
● Indications
○ Difficulty swallowing, oral and pharyngeal lesions
○ Persistent nausea and vomiting, poor alimentary absorption, intestinal obstruction
○ Profound weakness or cachexia
○ Comatose or moribund patient
Communicating with the Family
● Be open and prepared for common concerns
● Provide end-of-life leaflet if available
● Discuss normality of physical changes when death is approaching
○ No eating and drinking - normal process of body shutting down, becomes unable to
manage food or fluids
○ Being semiconscious or unconscious - can still talk to patient
○ Death rattle
● Explain which medication is available to treat symptoms
○ Pain, agitation, secretions, nausea
○ Syringe drivers
● Mention support of nursing teams / marie-curie
● What happens afterwards:
○ Recognise death when there is no breathing and no pulse
○ Call DN for verification, DN calls GP for verification
○ Call the undertaker
● Make sure to have discussed the potential of a post-mortem (e.g. in mesothelioma) before death
Bereavement
● Significant morbidity: sleeplessness, anxiety, depression, drug/alcohol abuse
● Mortality: risk increased in first year after bereavement from chronic diseases
● Process of grieving: goes around in circles
○ Numbness: follows great initial distress, and distress occasionally breaking through, lasts a
few days ~ till funeral
■ Be aware that relative finds it difficult to take in information
■ Simple and sensitive explanations regarding death certificate, contacting undertaker,
taking belongings home
○ Pining: intense anxiety, searching aimlessly, anger, lasts for months
○ Disorganisation and despair: going over events, sense of presence of loved one
○ Reorganisation and reintegration: beginning adjustments, rebuilding world, may not start
until years after the loss
● Kuebler-Ross Model of grief: denial and isolation, anger, bargaining, depression, acceptance
● Tasks of grieving: feeling the pain, accepting the loss, adjustment, letting go
● Manifestations of grief: thoughts, feelings, physical effects, behaviour
● When doctors are lost for words: offer help (don’t be offended if it’s refused), accept help, send a
card, behave normally, listen, offer to enter their world of loss
● Complex grief: counselling, extra support, specialist help
Administrative Tasks After Death
● Doctor: Verify death by registered medical practitioner at bedside
● Doctor: Issue certificate of cause of death
○ Section 1a = immediate cause of death
○ Lowest under 1 = underlying cause of death
○ Section 2 = illness that contributed but not directly caused death
○ Avoid: old age as single cause, organ failure or cardiac arrest as single cause, mode of dying
“syncope”, “collapse”, don’t use abbreviations, avoid sepsis
● Registration of death
● Issuing of Death certificate
○ Doctor: issue cremation certificate if required
● Refer to coroner if
○ Death <24h of admission to hospital
○ If a doctor has not seen the patient within 14d of death
○ If cause of death is uncertain
○ Other compulsory reasons: suicide, RTA, sudden infant death, bone fracture within 12m of
death, acute alcohol poisoning, death following surgical procedures, industrial diseases and
accidents, drugs
○ If in doubt, call ask the Coroner’s Office
Specific Problems
at the End of Life
Psychiatric Problems
● Anxiety
○ Conservative: acknowledge fears, access to support, relaxation therapies,
physical therapies
○ Medical:
■ Acute - lorazepam/diazepam prn
■ Chronic - SSRI, b-blockers, diazepam or haloperidol
● Depression
● Assessment of suicide risk is important
● Agitation
○ Consider reversible causes: pain, urinary retention, severe constipation, nbm
(comfort feeding is kinder), disorientation (provide hearing and visual aids),
opiate toxicity
○ Then consider medical treatment: 2.5-5mg midazolam initially, can increased
doses or use syringe driver. Consider levomepromazine if not working or d&v
General Pain Management
● Consider all origins of pain (emotional and physical), don’t assume a cause and treat
reversible causes: drugs, biochemical abnormalities, poor nutrition, RIP, infection, effects of
prolongued bed rest
● Analgesic ladder
○ non-opioid +/- adjuvant
○ weak opioid +/- non-opioid +/- adjuvant
○ strong opioid +/- non-opioid +/- adjuvant
● Adjuvants:
○ Steroids (8-16mg dexamethasone OD morning)
○ NSAIDS
○ TCA (25mg/10mg if elderly nightly amitriptyline)
○ Anticonvulsants (100-300g nightly gabapentin)
○ Some antiarrhythmics (i.e. local anaesthetics)
○ Bisphosphonates for bone pain
○ a2 adrenergic blockers, anticholinergics
○ Muscle relaxants
○ Somatostatin analogues
Cancer Pain Mx
● Consider physical and emotional source of pain
● WHO analgesic ladder (adapted)
○ non-opioid +/- adjuvant
e.g. 600mg aspirin QDS, 1g paracetamol QDS
○ weak opioid +/- non-opioid +/- adjuvant
e.g. codeine 60mg QDS
○ strong opioid +/- non-opioid +/- adjuvant
e.g. morphine 5-10mg 6x/d
● Opiate dosing: start normal release rapid onset of short duration with equal breakthrough doses QDS, 5-
>250mg, titrate up as required in 30-50% increments. Requires continuous adjustment in-between periods of
stability. Consider double dose at bedtime. Change to to modified release once daily needs known (half to
total daily dose).
● Notes on various opioids
○ Parenteral: diamorphine better
○ Transdermal: fentanyl or buprenorphine
○ PR: oxycodone
○ Kidney failure: alfentanil
○ Pethidine not appropriate as short-acting
● Toxicity: agitation, peripheral shadows, confusion, myoclonic jerks. Don’t confuse with signs of uncontrolled
pain and avoid “terminal agitation” due to opioid toxicity.
Specific Pains
● Colic 2-4mg qcds loperamide or 300ug tds hyoscine HBr
● Liver capsule pain 4-8mg OD dexamethasone
● Neuropathic pain 10/25mg ON amitriptyline, 100-300mg ON
gabapentin
● Muscle pain Muscle relaxants, e.g. 5-10mg diazepam OD or
baclofen
● Pain of short duration, e.g. during dressing changes: short-acting opioid e.
g. 200ug fentanyl citrate or breakthrough dose of morphine 20min prior
Difficult Pain
● not responsive to opioids (10%), breaks through despite opioids, a pain not
usually managed with opioids
● Consider switch to methadone (conversion ratio is dose-dependent) or
ketamine
● Invasive techniques:
○ Nerve blocks
○ Permanent neurodestruction
○ Neurostimulation
○ Neuroablation
○ Epidurals (short term)
○ Intrathecal (subarachnoid, longer term), both require 1/10 of systemic
dose
○ Radiotherapy, chemotherapy, surgery
Cardiovascular Problems
● Heart failure
○ Transition to last days of life difficult to discern
○ Makes timely access to palliative care difficult, as well as choice of location of
death.
○ Deactivate defibrillator function of pacemaker, mode of death often due to multi-
organ failure.
● Severe terminal bleed
○ Causes: Bowel, lung, head, neck, urinary, gynae CA, groin nodes => erosion of
large vessels. Radiation necrosis
○ Advance care planning very important = is resuscitation appropriate? If non-
terminal then first aid measures
○ Stay with patient
○ Problem, if bleeding starts too late to give drugs as take a while to work
○ Consider 20-40mg sc/IV midazolam, can give diazepam, can give diamorphine
sc/IV
Cardiovascular Problems
● Anaemia: treat reversible causes and consider transfusion, take note of
improvement achieved with transfusion to guide further management
● SVC obstruction: treat SOB and refer to oncologist for opinion, stenting and
thrombolysis
● Lymphoedema: avoid injury to limb, good skin care, treat fungal (topical) and
bacterial (systemic) infections, compression bandages initially, then lymphoedema
sleeve for maintenance, gentle exercise, massage, consider diuretic if drug-related
or venous component
Palliative Care in Dementia
● Indicators of terminal phase: unable to walk, urinary and faecal
incontinence, Barthel scale < 3, recurrent infections (aspiration
pneumonia), severe pressure sores
● Treat agitation (See above notes)
GI Problems: Nausea
● Nausea
● Anticipate nausea, e.g. co-prescribe with strong opioid for the first week
● Consider reversible causes (pain, constipation, infection, hypercalcaemia, tense ascites, RIP, anxiety),
review medications as potential causes
● Try to distinguish between delayed gastric emptying or early obstruction
● Review patient frequently
● Conservative Mx: control malodours, calm, reassuring environment, avoid exposure to food, small snacks,
no big meals, acupressure wrist bands
● Routes: prophylaxis-PO, established-parenteral, e.g. syringe driver and revert to PO once controlled
● Antiemetic ladder
1. Narrow spectrum: Haloperidol DA antagonist, drug-induced nausea, smell-induced,
Ca2+
Cyclizine Central H1 receptor blocker
Metoclopramide Blocks central chemoreceptor trigger zone
Domperidone Blocks peripheral DA receptors
2. Broad spectrum: Odansetron 5-HT3 receptor antagonist
Also: dexamethasone, levomepromazine (neuroleptic, analgesic, antiemetic, hypnotic) can use for terminal
agitation, pro-kinetics (metoclopramide - central => dystonia, domperidone - peripheral) best used if delayed
gastric emptying, consider lorazepam if anxiety-induced
Antiemetics
● Chemical cause / brainstem:
haloperidol
● Stasis: domperidone,
metoclopramide
● Anxiety: lorazepam
● Obstruction: cyclizine and
haloperidol
● General: odansetron
GI Problems: ctnd.
● Constipation: !early sign of spinal cord compression?
○ Anticipate: prescribe laxatives with opioids
○ Conservative: increase fluid and fibre intake, encourage mobility, ensure privacy, stool softeners
○ Medical:
■ Stimulants: senna, dantron, bisacodyl - avoid if obstruction
■ Osmotics: lactulose, movicol
■ Softeners: docusate - can use alone in obstruction
■ Bulk-forming: methylcellulose, fybogel - may worsen constipation in palliative care
■ Suppositories: glycerol, bisacodyl
■ Enemas: phosphate, sodium citrate, arachis oil
● Malignant obstruction
○ Consider surgical if still fit
○ Endoscopic stenting or venting gastrostomy
○ Chemo- or radiotherapy
○ Medical: control n&v, stool softeners, pain relief (colic and background pain), vary if partial or complete
■ Partial and no colic: metoclopramide, laxatives, stool softener, opioid CSCI
■ Comple / colic: stop stimulant laxatives and pro-kinetics, opioid CSCI, cyclizine +/- haloperidol, hyoscine
butylbromide for colic. Consider dexamethasone and octreotide (somatostatin analogue)
GI Problems: ctnd.
● Diarrhoea: increase fluid intake, screen for infection, rule out overflow diarrhoea, consider 300-600mg tds aspirin,
odansetron 4mg tds if radiation induced, symptomatic treatment: codeine phosphate 30-60mg qds
● Cachexia: = - ve protein and energy balance not reversed by increased calorie intake (inability to absorb and utilise the
calories), distinguish from starvation where there is no acute phase response and relative preservation of muscle, just
adipose loss and no hepatomegaly.
○ General: reduce factors preventing intake such as dry mouth
○ Anorexia: Alcohol, prokinetic, megestrol acetate, steroids, antidepressants
○ Mx: consider NGT, gastrostomy, parenteral nutrition, hypercaloric feeding with vitamin and mineral
supplementation, insulin, progestogens, NSAIDs, steroids, antioxidants.
○ Late: improve mood and maintain appetite
● Mouth-related symptoms
○ Mouth pain: analgesic mouth wash, topical NSAIDs, review medication and consider saliva substitutes. Maintain
good oral hygiene
○ Infection: treat
○ Dry mouth: ice chips, pineapple, gum
● Hiccups: rebreathing in paper bag, pharyngeal stimulation, metoclopramide, chlorpromaxine
● Ascites: spironolactone and bumetanide but not if abdo malignancy
Renal Disease
● How to decide whether to start dialysis?
○ Opting to start dialysis: >60% of patients regret starting in Stage 5 CKD and >50% start due to
physician’s wish => Review decision at the time it becomes relevant, ensure advance directive and
DNR in place if desired, can do trial of dialysis which removes burden of decision.
○ Choosing conservative management initially (End-stage GFR < 10mL/min): Dietary modifications, fluid
balance, treatment of anaemia, correction of acidosis, hyperkalaemia, calcium/phosphorus metabolism,
blood pressure management
○ Terminal case with time to death < 10d: Pain management (alfentanil, careful with opioids), monitor for
toxicity of drugs, manage SOB, manage restless legs, pruritus, cramps
● Scenarios:
○ CDK with decision not to dialyse at end stage , e.g. with co-morbidities - what are additional days likely
to offer?
○ Dialysis patient with a second terminal disease
○ Elective withdrawal from dialysis
● Survival in end-stage renal disease patients: 12m conservative, 36m dialysis, but if HIGH comorbidities
much smaller advantage, especially with ischaemic heart disease (not statistically significant)
Motor Neuron Disease
● Care Centre MDFT approach in Cambridge: Care, patient education,
research. MDT approach with single point of access
● Early referral to respiratory services, e.g. Respiratory and Sleep Support
Centre RSSC Papworth
● Planning end-of life care, advance decisions to refuse treatment, plan
strategies to commence or withdraw non-invasive ventilation (NIV) if
desired and what to do if non-invasive ventilation fails, continue feeding via
gastrostomy?
● Just-in case kit
● Causes of death: 82% respiratory failure, 72% rapid deterioration and
death in <24h, 27% alert and communicating 5min prior to death, 62%
asleep when died, 11% comatose when died (NO choking)
Respiratory Problems
● General: reassure, physio
● Cough: linctus 5-10mL prn, nebulised saline
● SOB: consider fan, air, O2. Oral or subcut opioids, benzodiazepines.
Relaxation techniques. Consider thoracocentesis if effusion.
● Secretions: hyoscine hydrobromide PO/syringe driver or nebulised
ipratropium
● Chest infection: nebulised saline +/- antibiotics (not if terminal event)
● Stridor: steroids, radiotherapy, stenting, 10-40mg midazolam prn for
sedation if terminal event
Other Problems
● Bed sores: protective mattresses and cushions, incontinence advice,
appropriate positioning and movement, early recognition of red patches,
aim for comfort over healing, prevent infection, contact specialist DN
● RIP: raise head of bed, 16mg OD dexamethasone, analgesia
● Itching: topical emollients, sedative antihistamines at night, colestyramine
if due to jaundice
● Fever: Naproxen (NSAID)
● Drooling: Propantheline, amitriptyline, hyoscine, glycopyronium, botox
injection, atropine drugs, suction
Paediatric Palliative Care
● Differences to adult palliative care
○ Premature end of life
○ Small numbers and rare conditions, can be familial
○ Stage of development of patient
○ Involvement of parents
○ Continuing education and play
○ Advanced care planning in terms of CPA and life support
● Diseases: CA, CF, Duchenne’s, cerebral palsy, adrenoleukodystrophy, rare
diseases
● Symptoms to be controlled similar to adults
○ Brain tumours: neurological symptoms including seizures
○ Distress
○ ! dystonia side-effects in neuroleptics
○ ! toxicity
● Tailor therapy to each child, anticipate symptoms and respect family’s preferences
Ethical Issues at the
End of Life
Capacity
● All adults are assumed to have capacity, unless proven otherwise
● A person with capacity has to be able to
○ Understand and retain information relating to the treatment
○ Weigh the information to make an informed choice
○ Be able to communicate the decision.
● There are different levels of understanding required for different decisions
● See also: http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Capacity.aspx
2.
Two-stage Test of Capacity: according to MCA
● DIAGNOSTIC THRESHOLD
○ Does the patient have a disorder or dysfunction of the mind/brain?
● TEST OF ABILITY TO MAKE THE DECISION
○ Is she/he unable to understand, retain or weigh up relevant
information as a result of the condition? Is he/she unable to
communicate his/her decision?
● Capacity is only impaired if both apply.
2.
Treatment Decisions w/o Capacity
● From manual: “BEFORE adopting an alternative approach to seeking
consent, you must demonstrate that the patient lacks the capacity to make
this decision.”
● Can treat without consent if
○ Necessary to prevent death and patient cannot consent
○ Assessment of mental health disorder
● Take measures to maximise capacity (DUTY! give time, involve carers to
relay information, use visual aids, delay treatment until consent is possible)
● Follow valid advance directive
● Consult with donee of valid advance directive, lasting Power of Attorney
● No AD or LPA: Act in patient’s best interests, doctor has a duty to consult
with someone who knows the patient or IMCA*
2.
◉ Mental Capacity Act 2005
● To empower and protect those who lack capacity
● Aims to maximise capacity and defines what to do if no capacity
● Enables advance decisions
● Enables allocation of lasting power of attorney
● Can limit human right to liberty: permits acts connected with the person’s
health and welfare in absence of consent if no capacity
● If incompetent others decide in best interest
● Defines criteria for best interest
Advance Decisions (AD): According to ◉ MCA 2005
● Decision to refuse future specific treatment in particular circumstances at a time when person lacks
capacity
● Doctor liable for continuation of treatment if AD valid and applicable to treatment! = treatment without
consent!!!
● Prerequisites for validity of AD
○ Person >18 and with capacity
○ Written
○ Signed
○ Witnessed
○ Explicit: i.e. includes statement of refusal of treatment “even if life at risk”
○ DOES NOT need to be in formal language
● What invalidates AD
○ Withdrawal when patient has capacity (can be oral or behaviour inconsistent with AD)
○ Lasting Power of Attorney granted to someone
○ Treatment or circumstances not that specified in AD (apply to the court of protection for clarification if in doubt!!!)
○ Situation that patient could not have anticipated
2.
Lasting Powers of Attorney: According to ◉ MCA
● LPA is appointed by an adult with capacity (donor) to give legal power to make decisions on
donor’s behalf when donor lacks capacity.
● Is registered with the Office of Public Guardian OPG
● Personal welfare LPA includes giving or refusing consent to medical treatments. Other types?
● LPA acts in donor’s best interests, also defined in general by MCA in “best interest checklist”
○ NOT JUST what is good for patient’s health, also ethical, social, emotional and welfare
considerations
○ NOT based on age, appearance, unjustified assumptions
○ Keep in mind likelihood of donor regaining capacity: reversible treatment options available?
Encourage and promote donor’s ability to participate
○ Least restrictive and invasive option usually better
○ NOT be motivated to bring about the donor’s death when it comes to life-sustaining treatment
○ Consider donor’s past and present wishes and feelings, beliefs and values, other factors,
views of named persons to be consulted, carers
2.
Best Interests Checklist: according to ◉ MCA
2.
Hierarchy of Decision Makers: according to ◉ MCA
● Advance decision by patient him/herself: written, signed, witnessed and
explicit - “even if life is at risk”
● Appointed lasting power of attorney
● Court of protection
● Appointed person by court of protection
● Doctor
2.
Statute relating to Mental Illness (2)
● Difference between MHA AND MCA:
○ MHA
■ Enables acts without consent in the case of mental illness
○ MCA
■ Aims to maximise capacity and protects those without capacity
■ Enables acts without consent for the sake of the patient’s welfare
○ Normally MHA trumps MCA
○ Exception: electro-convulsive therapy where MCA trumps MHA
2.
End of Life: General Principles
● Ethical conflicts
○ Beneficence vs. nonmaleficence
○ Nonmaleficence vs. autonomy
○ Act vs. omission vs. intention of act!!!!!
○ Principle/Doctrine of double effect:
Morally permissible to perform act with the intention to bring about a good
result (e.g. pain relief) even if the foreseeable side-effect may cause serious harm
(e.g. death). Legitimate act has undesirable consequences.
● Voluntary Requested by patient
● Nonvoluntary Patient can’t express
● Involuntary Against patient’s wishes
● General considerations/principles for management
○ Consider benefits and burdens of treatment
○ Consider consent, autonomy, capacity
○ If there are doubts about capacity or validity of an advance decision, err on side of
preservation of life
9.7.
End of Life: DNAR
● When to consider
○ CPR unlikely to be successful
○ Not in accord with recorded wishes of patient or advance decision (written,
signed, witnessed and explicit, i.e. “even if life is at risk”)
○ +ve outcome would lead to poor quality of life
○ consider as part of advance care planning, when there is a risk of
cardiorespiratory arrest
● Note: not in effect if reversible cause of arrest
● 2007 BMA guidance
○ No decision = in favour of CPR (unless patient refused, terminal phase of illness, burdens
of treatment outweigh benefits)
○ Individual assessment, wherever possible advance planning
○ Patient’s views important, if no capacity seek views of relatives regarding patient’s wishes
(although not binding)
○ Communication and information to the patient and his/her relatives are essential
○ DNAR only applies to CPR, not treatment
○ DNAR does not override clinical judgement if reversible cause of arrest
9.8.7.
End of Life: Withdrawal of Treatment
● If requested by patient, must be respected (voluntary, informed,
competent) or if advance decision
● Law distinguishes acts vs. omissions (deontological), switching off
ventilator is withdrawal of treatment, not euthanasia
● English law gives autonomy greater weight than beneficence, unless
no capacity, but always in best interest of the patient and NEVER with the
motivation to cause death (it can be an unavoidable consequence).
No capacity: ◉ MCA 2005
● ♚ Airedale NHS trust v Bland 1993
○ Withdrawal of life-sustaining treatment can be in the best interest of
the patient if the burdens of treatment outweigh the benefits
○ Basic care must always be provided, only treatment can be
withdrawn (treatment includes artificial nutrition and hydration ANH)
9.8.7.
End of Life: Euthanasia
● Euthanasia INTENTIONALLY bringing about the death of a
person through act or omission for his or her sake,
● Treatment WITH INTENTION to end life is inpermissible
● Issues
○ Beneficence vs. non-maleficence
○ Non-maleficence vs. respect for autonomy
○ Compatibility with duty of care
○ Capacity, consent
○ Principle of double effect
○ See general ethical principles at the end of life
9.8.7.
End of Life: Suicide
● ◉ Suicide Act 1961
○ Suicide decriminalised
○ BUT does not extend to assisted suicide:
■ Up to 14 years of prison!
■ However, prosecution only if public interest, which is determined according to the 2010 DPP*
criteria, 6/16 of which summarised here: 6 IN FAVOUR:
● victim under 18 * consent
● victim to capacity or consent or request (counts for 3) * motivation = compassion
● victim physically able to commit suicide * prior dissuasion
● suspect stood to gain (not pure compassion) * minor reluctant encouragem.
● suspect assisted in more than one case * report to the police
● suspect a healthcare professional
● Issues
○ Disabled less free to take their own life?
○ Forces people with degenerative diseases to commit suicide earlier
● Management
○ Cannot lawfully give information about assisted suicide, e.g. in Switzerland (2010: unlikely for relatives
to be prosecuted if accompanied)
9.8.7.
End of Life Legal Decisions
● ◉ MCA 2005: if no capacity and not advance directive, then act in best interest of patient, where life-
sustaining treatment concerned do not act with intention to cause death.
● ◉ Suicide Act 1961
● ♚ Airedale NHS Trust v Bland 1992
○ Withdrawal of artificial nutrition and hydration (ANH) from young man in vegetative state: burdens
outweigh benefits (alternative view: vegetative state = no (best) interests)
○ Distinguished basic care (warmth, hygiene, .. incl. ORAL hydration) which must be provided from
ANH which is treatment and can be withdrawn
● ♚ Dr Nigel Cox 1992
○ KCl injection to elderly patient in pain Suspended sentence
● ♚ Dr David Moor 1999
○ Giving lethal dose of morphine to “relieve pain”?
○ Dr Anne Prety 2001: MND, human right to die
● ♚ Re F
● Assisted dying for the terminally ill defeated in house of Lords 2006 (Lord Joffe’s assisted dying for the
terminally ill bill)
● Switzerland: legal consequences for UK citizens travelling to die there
○ 2010 guidelines indicating that prosecution of relatives accompanying patient are unlikely to be
prosecuted if good reasons (DPP policy to outweigh factors for and against public interest)
9.8.7.

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Palliative Care for Medical Finals

  • 1. Palliative Care Notes Christiane Riedinger, Spring 2015
  • 2. TOC ● Ethics of palliative care end of life issues, autonomy ● Law of palliative care incl. GMC, BMA, RC guidelines ● Clinical Problems ○ Pain ○ GI ○ Cardiorespiratory ○ Neurological ○ Psychological ● Natural histories of life-limiting conditions ○ Cancer ○ Cardiac ○ Pulmonary ○ Renal, liver failure, ... ● Practical procedures ● Theories of bereavement, social model of grief ● Multi-disciplinary approach
  • 4. Identifying Patients for Palliative Care ● Identifying patients for palliative care ○ Surprise question: Would I be surprised if this patient died? ○ Prognostication: ■ Indicators of decline, e.g. performance status (ECOG, Karnofsky), speed of decline ■ Prognostic tools, e.g. PiPs-A/B prognosticator ■ Clinical indicators: deterioration despite optimal Rx, complex difficult symptoms, bedbound, unable to swallow, drowsy/unconscious, only sips water ● Why does it matter? ○ Patients: preparation, choice in how to spend limited time, planning (will, care of children), good-byes, sorrys, thank-yous, preference of place of care and death ○ Professionals: planning intervention choices, ceilings of treatment, informing appropriate services, catering to patient’s wishes
  • 5. Advance Care Planning - good for CCS ● Barriers ○ Doctors: prognostic uncertainty, fear of upsetting patient, desire to maintain hope, limited collaboration between 1* and 2* care, lack of time ○ Patient: expectation that clinicians will initiate, denial, feeling of irrelevance, taboos ● Take responsibility for early ACP being offered (not just DNAR!) ● Content of discussion in anticipation of loss of decision-making capacity ○ Shared understanding of the illness ○ Prognosis ○ Values ○ Personal goals of care ○ Specific preferences for future care (place, treatment, resus) ○ Respect wishes of those who do not wish to talk ● Method: Phases - “have you any concerns for the future”, “keeping you in control”, “avoiding crises”, “helping to support family”; select location, gather information first, give appropriate information ● Outcomes ○ Statement of wishes and preferences documented in notes ○ Advance decision to refuse treatment arranged ○ Lasting Power of Attorney arranged ● Take responsibility for communicating outcome: discharge letter
  • 6. Disease Trajectories ● Cancer: horizontal, i.e. maintenance of health with fast decay and steep decline towards death ● Chronic illness with exacerbations: steady decline with relapsing- remitting episodes and final deterioration leading to death ● Chronic illness with gradual decline, e.g. dementia ● Patients with cancer most likely to die at home or in hospices ● Patients with dementia most likely to die in a care home ● Patients with cardiac or respiratory illness most likely to die in hospitals
  • 7. Prognostication: Communicating Prognosis ● Never give a number ● Don’t say it’s impossible to tell ● Use: Days, weeks, months, years ● Guided by rate of chance, if day-by-day change then days is the most likely prognosis ● Be open about the uncertainty ● Be realistic: some surprise us, shorter ● Be hopeful: some surprise us, longer ● Rainy day thinking: hope for the best, prepare for the worst
  • 8. Locations at the End of Life ● Wish for death at home becomes smaller the more the illness progresses ● Causes of problems at home: carer fatigue, difficult symptoms ● Discharging home to die: ○ Pt NOT medically fit for discharge ○ Act fast or they may become too unwell to travel ○ Discharge planning nurse specialist liaises with district nurse to arrange NNA (nursing needs assessment) and fast- track funding ○ Anticipatory prescribing: just-in-case box ○ Call GP
  • 9. Gold-Standards Framework ● NFP organisation enabling optimal quality of end-of-life care ● 7 Key tasks: Communication, coordination of care, control of symptoms and on-going assessment, continuing support, continued learning, carer and family support, care in the final days ● A ALL = prognosis >years ● B BENEFITS = months, unstable or advanced disease ● C CONTINUING CARE = weeks, deteriorating Amber Care Bundle: Assess, Mx, Best practice, Engagement, uncertain recovery ● D DAYS = terminal care ● After-care = care after death
  • 10. Practical Aspects of End of Life Care ● Diagnose dying process ● Assessment (on-going!) ● Management (including anticipatory prescribing) ● Referral to Specialist Palliative Care Services ● Symptom control in the terminal phase ● Syringe drivers ● Communication (most complaints are about poor communication) ● Bereavement ● A good death: ○ Control: know when it is coming, pain relief, symptom control, choice of location and people present, dignity ○ Preparation: advance directives, will, say good-byes, easier to let go ○ Access to information and support
  • 11. Last 48 Hours ● Consider patient’s wishes (ideally long before the last 48h): wants to go home? hospice a possibility? ● Alert out of hours providers ● Ensure DNAR in place ● Be sensitive to different religious and cultural approaches ● Assess patient needs (including psychological) ● Keep examinations and investigations to a minimum (only check or abnormalities if it has been decided to treat them, otherwise don’t check) ● Review medication, stop all unnecessary medications (and anything PO), comfort is a priority ● Assure appropriate nursing care ● Treat specific symptoms ● Use “just in case box”: diamorphine subcut 2.5-5mg/4h, midazolam 2.5-5mg/4h, haloperidol 1-2.5 mg/8h, hyoscine hydrobromide 0.4mg/8h ● “Death rattle” (due to excessive respiratory secretions), Cheynes-Stokes respiration (cyclical) ○ Reassure relatives ○ Treat prophylactically: ■ Non-sedative - glycopyrronium 200ug sc stat, review after 1h, 4h, may require syringe driver ■ Sedative: hyoscine HBr 400ug /4-8h SC or via transdermal patch
  • 12. Key Drugs / “Just in Case” Box ● Analgesia PAIN ○ Diamorphine, morphine, oxycodone, alfentanil ○ Can continue patches, but consider driver (can be in tandem) with PRN ○ Convert regular opioids to subcut /24h ■ Subcut diamorphine 3x as potent as oral ■ Calculate breakthrough prn dose: ⅙ of total ○ Consider co-analgesics ● Sedative / anxiolytic / muscle relaxant AGITATION ○ Midazolam ● Anti-emetic N&V ○ Cyclizine, haloperidol, levomepromazine ○ If already on one, can continue and prescribe 2nd prn ○ Less prevalent in terminal vs palliative phase ● Anticholinergic SECRETIONS ○ Glycopyrronium, hyoscine hydrobromide
  • 13. Syringe Driver ● CSCI = continuous sub-cutaneous infusion, example 40mg diamorphine /24h in CSCI plus 15mg diamorphine SC every 2-4h prn ● Prescribe prospectively if no regular opioids or antiemetics ● Consider starting if pt has needed >2-3 prn injections /24h ● Check drug combinations for compatibility ● Check appropriate diluent ● Continuous reassessment and dosage change if required ● Seek help ● Indications ○ Difficulty swallowing, oral and pharyngeal lesions ○ Persistent nausea and vomiting, poor alimentary absorption, intestinal obstruction ○ Profound weakness or cachexia ○ Comatose or moribund patient
  • 14. Communicating with the Family ● Be open and prepared for common concerns ● Provide end-of-life leaflet if available ● Discuss normality of physical changes when death is approaching ○ No eating and drinking - normal process of body shutting down, becomes unable to manage food or fluids ○ Being semiconscious or unconscious - can still talk to patient ○ Death rattle ● Explain which medication is available to treat symptoms ○ Pain, agitation, secretions, nausea ○ Syringe drivers ● Mention support of nursing teams / marie-curie ● What happens afterwards: ○ Recognise death when there is no breathing and no pulse ○ Call DN for verification, DN calls GP for verification ○ Call the undertaker ● Make sure to have discussed the potential of a post-mortem (e.g. in mesothelioma) before death
  • 15. Bereavement ● Significant morbidity: sleeplessness, anxiety, depression, drug/alcohol abuse ● Mortality: risk increased in first year after bereavement from chronic diseases ● Process of grieving: goes around in circles ○ Numbness: follows great initial distress, and distress occasionally breaking through, lasts a few days ~ till funeral ■ Be aware that relative finds it difficult to take in information ■ Simple and sensitive explanations regarding death certificate, contacting undertaker, taking belongings home ○ Pining: intense anxiety, searching aimlessly, anger, lasts for months ○ Disorganisation and despair: going over events, sense of presence of loved one ○ Reorganisation and reintegration: beginning adjustments, rebuilding world, may not start until years after the loss ● Kuebler-Ross Model of grief: denial and isolation, anger, bargaining, depression, acceptance ● Tasks of grieving: feeling the pain, accepting the loss, adjustment, letting go ● Manifestations of grief: thoughts, feelings, physical effects, behaviour ● When doctors are lost for words: offer help (don’t be offended if it’s refused), accept help, send a card, behave normally, listen, offer to enter their world of loss ● Complex grief: counselling, extra support, specialist help
  • 16. Administrative Tasks After Death ● Doctor: Verify death by registered medical practitioner at bedside ● Doctor: Issue certificate of cause of death ○ Section 1a = immediate cause of death ○ Lowest under 1 = underlying cause of death ○ Section 2 = illness that contributed but not directly caused death ○ Avoid: old age as single cause, organ failure or cardiac arrest as single cause, mode of dying “syncope”, “collapse”, don’t use abbreviations, avoid sepsis ● Registration of death ● Issuing of Death certificate ○ Doctor: issue cremation certificate if required ● Refer to coroner if ○ Death <24h of admission to hospital ○ If a doctor has not seen the patient within 14d of death ○ If cause of death is uncertain ○ Other compulsory reasons: suicide, RTA, sudden infant death, bone fracture within 12m of death, acute alcohol poisoning, death following surgical procedures, industrial diseases and accidents, drugs ○ If in doubt, call ask the Coroner’s Office
  • 18. Psychiatric Problems ● Anxiety ○ Conservative: acknowledge fears, access to support, relaxation therapies, physical therapies ○ Medical: ■ Acute - lorazepam/diazepam prn ■ Chronic - SSRI, b-blockers, diazepam or haloperidol ● Depression ● Assessment of suicide risk is important ● Agitation ○ Consider reversible causes: pain, urinary retention, severe constipation, nbm (comfort feeding is kinder), disorientation (provide hearing and visual aids), opiate toxicity ○ Then consider medical treatment: 2.5-5mg midazolam initially, can increased doses or use syringe driver. Consider levomepromazine if not working or d&v
  • 19. General Pain Management ● Consider all origins of pain (emotional and physical), don’t assume a cause and treat reversible causes: drugs, biochemical abnormalities, poor nutrition, RIP, infection, effects of prolongued bed rest ● Analgesic ladder ○ non-opioid +/- adjuvant ○ weak opioid +/- non-opioid +/- adjuvant ○ strong opioid +/- non-opioid +/- adjuvant ● Adjuvants: ○ Steroids (8-16mg dexamethasone OD morning) ○ NSAIDS ○ TCA (25mg/10mg if elderly nightly amitriptyline) ○ Anticonvulsants (100-300g nightly gabapentin) ○ Some antiarrhythmics (i.e. local anaesthetics) ○ Bisphosphonates for bone pain ○ a2 adrenergic blockers, anticholinergics ○ Muscle relaxants ○ Somatostatin analogues
  • 20. Cancer Pain Mx ● Consider physical and emotional source of pain ● WHO analgesic ladder (adapted) ○ non-opioid +/- adjuvant e.g. 600mg aspirin QDS, 1g paracetamol QDS ○ weak opioid +/- non-opioid +/- adjuvant e.g. codeine 60mg QDS ○ strong opioid +/- non-opioid +/- adjuvant e.g. morphine 5-10mg 6x/d ● Opiate dosing: start normal release rapid onset of short duration with equal breakthrough doses QDS, 5- >250mg, titrate up as required in 30-50% increments. Requires continuous adjustment in-between periods of stability. Consider double dose at bedtime. Change to to modified release once daily needs known (half to total daily dose). ● Notes on various opioids ○ Parenteral: diamorphine better ○ Transdermal: fentanyl or buprenorphine ○ PR: oxycodone ○ Kidney failure: alfentanil ○ Pethidine not appropriate as short-acting ● Toxicity: agitation, peripheral shadows, confusion, myoclonic jerks. Don’t confuse with signs of uncontrolled pain and avoid “terminal agitation” due to opioid toxicity.
  • 21. Specific Pains ● Colic 2-4mg qcds loperamide or 300ug tds hyoscine HBr ● Liver capsule pain 4-8mg OD dexamethasone ● Neuropathic pain 10/25mg ON amitriptyline, 100-300mg ON gabapentin ● Muscle pain Muscle relaxants, e.g. 5-10mg diazepam OD or baclofen ● Pain of short duration, e.g. during dressing changes: short-acting opioid e. g. 200ug fentanyl citrate or breakthrough dose of morphine 20min prior
  • 22. Difficult Pain ● not responsive to opioids (10%), breaks through despite opioids, a pain not usually managed with opioids ● Consider switch to methadone (conversion ratio is dose-dependent) or ketamine ● Invasive techniques: ○ Nerve blocks ○ Permanent neurodestruction ○ Neurostimulation ○ Neuroablation ○ Epidurals (short term) ○ Intrathecal (subarachnoid, longer term), both require 1/10 of systemic dose ○ Radiotherapy, chemotherapy, surgery
  • 23. Cardiovascular Problems ● Heart failure ○ Transition to last days of life difficult to discern ○ Makes timely access to palliative care difficult, as well as choice of location of death. ○ Deactivate defibrillator function of pacemaker, mode of death often due to multi- organ failure. ● Severe terminal bleed ○ Causes: Bowel, lung, head, neck, urinary, gynae CA, groin nodes => erosion of large vessels. Radiation necrosis ○ Advance care planning very important = is resuscitation appropriate? If non- terminal then first aid measures ○ Stay with patient ○ Problem, if bleeding starts too late to give drugs as take a while to work ○ Consider 20-40mg sc/IV midazolam, can give diazepam, can give diamorphine sc/IV
  • 24. Cardiovascular Problems ● Anaemia: treat reversible causes and consider transfusion, take note of improvement achieved with transfusion to guide further management ● SVC obstruction: treat SOB and refer to oncologist for opinion, stenting and thrombolysis ● Lymphoedema: avoid injury to limb, good skin care, treat fungal (topical) and bacterial (systemic) infections, compression bandages initially, then lymphoedema sleeve for maintenance, gentle exercise, massage, consider diuretic if drug-related or venous component
  • 25. Palliative Care in Dementia ● Indicators of terminal phase: unable to walk, urinary and faecal incontinence, Barthel scale < 3, recurrent infections (aspiration pneumonia), severe pressure sores ● Treat agitation (See above notes)
  • 26. GI Problems: Nausea ● Nausea ● Anticipate nausea, e.g. co-prescribe with strong opioid for the first week ● Consider reversible causes (pain, constipation, infection, hypercalcaemia, tense ascites, RIP, anxiety), review medications as potential causes ● Try to distinguish between delayed gastric emptying or early obstruction ● Review patient frequently ● Conservative Mx: control malodours, calm, reassuring environment, avoid exposure to food, small snacks, no big meals, acupressure wrist bands ● Routes: prophylaxis-PO, established-parenteral, e.g. syringe driver and revert to PO once controlled ● Antiemetic ladder 1. Narrow spectrum: Haloperidol DA antagonist, drug-induced nausea, smell-induced, Ca2+ Cyclizine Central H1 receptor blocker Metoclopramide Blocks central chemoreceptor trigger zone Domperidone Blocks peripheral DA receptors 2. Broad spectrum: Odansetron 5-HT3 receptor antagonist Also: dexamethasone, levomepromazine (neuroleptic, analgesic, antiemetic, hypnotic) can use for terminal agitation, pro-kinetics (metoclopramide - central => dystonia, domperidone - peripheral) best used if delayed gastric emptying, consider lorazepam if anxiety-induced
  • 27. Antiemetics ● Chemical cause / brainstem: haloperidol ● Stasis: domperidone, metoclopramide ● Anxiety: lorazepam ● Obstruction: cyclizine and haloperidol ● General: odansetron
  • 28. GI Problems: ctnd. ● Constipation: !early sign of spinal cord compression? ○ Anticipate: prescribe laxatives with opioids ○ Conservative: increase fluid and fibre intake, encourage mobility, ensure privacy, stool softeners ○ Medical: ■ Stimulants: senna, dantron, bisacodyl - avoid if obstruction ■ Osmotics: lactulose, movicol ■ Softeners: docusate - can use alone in obstruction ■ Bulk-forming: methylcellulose, fybogel - may worsen constipation in palliative care ■ Suppositories: glycerol, bisacodyl ■ Enemas: phosphate, sodium citrate, arachis oil ● Malignant obstruction ○ Consider surgical if still fit ○ Endoscopic stenting or venting gastrostomy ○ Chemo- or radiotherapy ○ Medical: control n&v, stool softeners, pain relief (colic and background pain), vary if partial or complete ■ Partial and no colic: metoclopramide, laxatives, stool softener, opioid CSCI ■ Comple / colic: stop stimulant laxatives and pro-kinetics, opioid CSCI, cyclizine +/- haloperidol, hyoscine butylbromide for colic. Consider dexamethasone and octreotide (somatostatin analogue)
  • 29. GI Problems: ctnd. ● Diarrhoea: increase fluid intake, screen for infection, rule out overflow diarrhoea, consider 300-600mg tds aspirin, odansetron 4mg tds if radiation induced, symptomatic treatment: codeine phosphate 30-60mg qds ● Cachexia: = - ve protein and energy balance not reversed by increased calorie intake (inability to absorb and utilise the calories), distinguish from starvation where there is no acute phase response and relative preservation of muscle, just adipose loss and no hepatomegaly. ○ General: reduce factors preventing intake such as dry mouth ○ Anorexia: Alcohol, prokinetic, megestrol acetate, steroids, antidepressants ○ Mx: consider NGT, gastrostomy, parenteral nutrition, hypercaloric feeding with vitamin and mineral supplementation, insulin, progestogens, NSAIDs, steroids, antioxidants. ○ Late: improve mood and maintain appetite ● Mouth-related symptoms ○ Mouth pain: analgesic mouth wash, topical NSAIDs, review medication and consider saliva substitutes. Maintain good oral hygiene ○ Infection: treat ○ Dry mouth: ice chips, pineapple, gum ● Hiccups: rebreathing in paper bag, pharyngeal stimulation, metoclopramide, chlorpromaxine ● Ascites: spironolactone and bumetanide but not if abdo malignancy
  • 30. Renal Disease ● How to decide whether to start dialysis? ○ Opting to start dialysis: >60% of patients regret starting in Stage 5 CKD and >50% start due to physician’s wish => Review decision at the time it becomes relevant, ensure advance directive and DNR in place if desired, can do trial of dialysis which removes burden of decision. ○ Choosing conservative management initially (End-stage GFR < 10mL/min): Dietary modifications, fluid balance, treatment of anaemia, correction of acidosis, hyperkalaemia, calcium/phosphorus metabolism, blood pressure management ○ Terminal case with time to death < 10d: Pain management (alfentanil, careful with opioids), monitor for toxicity of drugs, manage SOB, manage restless legs, pruritus, cramps ● Scenarios: ○ CDK with decision not to dialyse at end stage , e.g. with co-morbidities - what are additional days likely to offer? ○ Dialysis patient with a second terminal disease ○ Elective withdrawal from dialysis ● Survival in end-stage renal disease patients: 12m conservative, 36m dialysis, but if HIGH comorbidities much smaller advantage, especially with ischaemic heart disease (not statistically significant)
  • 31. Motor Neuron Disease ● Care Centre MDFT approach in Cambridge: Care, patient education, research. MDT approach with single point of access ● Early referral to respiratory services, e.g. Respiratory and Sleep Support Centre RSSC Papworth ● Planning end-of life care, advance decisions to refuse treatment, plan strategies to commence or withdraw non-invasive ventilation (NIV) if desired and what to do if non-invasive ventilation fails, continue feeding via gastrostomy? ● Just-in case kit ● Causes of death: 82% respiratory failure, 72% rapid deterioration and death in <24h, 27% alert and communicating 5min prior to death, 62% asleep when died, 11% comatose when died (NO choking)
  • 32. Respiratory Problems ● General: reassure, physio ● Cough: linctus 5-10mL prn, nebulised saline ● SOB: consider fan, air, O2. Oral or subcut opioids, benzodiazepines. Relaxation techniques. Consider thoracocentesis if effusion. ● Secretions: hyoscine hydrobromide PO/syringe driver or nebulised ipratropium ● Chest infection: nebulised saline +/- antibiotics (not if terminal event) ● Stridor: steroids, radiotherapy, stenting, 10-40mg midazolam prn for sedation if terminal event
  • 33. Other Problems ● Bed sores: protective mattresses and cushions, incontinence advice, appropriate positioning and movement, early recognition of red patches, aim for comfort over healing, prevent infection, contact specialist DN ● RIP: raise head of bed, 16mg OD dexamethasone, analgesia ● Itching: topical emollients, sedative antihistamines at night, colestyramine if due to jaundice ● Fever: Naproxen (NSAID) ● Drooling: Propantheline, amitriptyline, hyoscine, glycopyronium, botox injection, atropine drugs, suction
  • 34. Paediatric Palliative Care ● Differences to adult palliative care ○ Premature end of life ○ Small numbers and rare conditions, can be familial ○ Stage of development of patient ○ Involvement of parents ○ Continuing education and play ○ Advanced care planning in terms of CPA and life support ● Diseases: CA, CF, Duchenne’s, cerebral palsy, adrenoleukodystrophy, rare diseases ● Symptoms to be controlled similar to adults ○ Brain tumours: neurological symptoms including seizures ○ Distress ○ ! dystonia side-effects in neuroleptics ○ ! toxicity ● Tailor therapy to each child, anticipate symptoms and respect family’s preferences
  • 35. Ethical Issues at the End of Life
  • 36. Capacity ● All adults are assumed to have capacity, unless proven otherwise ● A person with capacity has to be able to ○ Understand and retain information relating to the treatment ○ Weigh the information to make an informed choice ○ Be able to communicate the decision. ● There are different levels of understanding required for different decisions ● See also: http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Capacity.aspx 2.
  • 37. Two-stage Test of Capacity: according to MCA ● DIAGNOSTIC THRESHOLD ○ Does the patient have a disorder or dysfunction of the mind/brain? ● TEST OF ABILITY TO MAKE THE DECISION ○ Is she/he unable to understand, retain or weigh up relevant information as a result of the condition? Is he/she unable to communicate his/her decision? ● Capacity is only impaired if both apply. 2.
  • 38. Treatment Decisions w/o Capacity ● From manual: “BEFORE adopting an alternative approach to seeking consent, you must demonstrate that the patient lacks the capacity to make this decision.” ● Can treat without consent if ○ Necessary to prevent death and patient cannot consent ○ Assessment of mental health disorder ● Take measures to maximise capacity (DUTY! give time, involve carers to relay information, use visual aids, delay treatment until consent is possible) ● Follow valid advance directive ● Consult with donee of valid advance directive, lasting Power of Attorney ● No AD or LPA: Act in patient’s best interests, doctor has a duty to consult with someone who knows the patient or IMCA* 2.
  • 39. ◉ Mental Capacity Act 2005 ● To empower and protect those who lack capacity ● Aims to maximise capacity and defines what to do if no capacity ● Enables advance decisions ● Enables allocation of lasting power of attorney ● Can limit human right to liberty: permits acts connected with the person’s health and welfare in absence of consent if no capacity ● If incompetent others decide in best interest ● Defines criteria for best interest
  • 40. Advance Decisions (AD): According to ◉ MCA 2005 ● Decision to refuse future specific treatment in particular circumstances at a time when person lacks capacity ● Doctor liable for continuation of treatment if AD valid and applicable to treatment! = treatment without consent!!! ● Prerequisites for validity of AD ○ Person >18 and with capacity ○ Written ○ Signed ○ Witnessed ○ Explicit: i.e. includes statement of refusal of treatment “even if life at risk” ○ DOES NOT need to be in formal language ● What invalidates AD ○ Withdrawal when patient has capacity (can be oral or behaviour inconsistent with AD) ○ Lasting Power of Attorney granted to someone ○ Treatment or circumstances not that specified in AD (apply to the court of protection for clarification if in doubt!!!) ○ Situation that patient could not have anticipated 2.
  • 41. Lasting Powers of Attorney: According to ◉ MCA ● LPA is appointed by an adult with capacity (donor) to give legal power to make decisions on donor’s behalf when donor lacks capacity. ● Is registered with the Office of Public Guardian OPG ● Personal welfare LPA includes giving or refusing consent to medical treatments. Other types? ● LPA acts in donor’s best interests, also defined in general by MCA in “best interest checklist” ○ NOT JUST what is good for patient’s health, also ethical, social, emotional and welfare considerations ○ NOT based on age, appearance, unjustified assumptions ○ Keep in mind likelihood of donor regaining capacity: reversible treatment options available? Encourage and promote donor’s ability to participate ○ Least restrictive and invasive option usually better ○ NOT be motivated to bring about the donor’s death when it comes to life-sustaining treatment ○ Consider donor’s past and present wishes and feelings, beliefs and values, other factors, views of named persons to be consulted, carers 2.
  • 42. Best Interests Checklist: according to ◉ MCA 2.
  • 43. Hierarchy of Decision Makers: according to ◉ MCA ● Advance decision by patient him/herself: written, signed, witnessed and explicit - “even if life is at risk” ● Appointed lasting power of attorney ● Court of protection ● Appointed person by court of protection ● Doctor 2.
  • 44. Statute relating to Mental Illness (2) ● Difference between MHA AND MCA: ○ MHA ■ Enables acts without consent in the case of mental illness ○ MCA ■ Aims to maximise capacity and protects those without capacity ■ Enables acts without consent for the sake of the patient’s welfare ○ Normally MHA trumps MCA ○ Exception: electro-convulsive therapy where MCA trumps MHA 2.
  • 45. End of Life: General Principles ● Ethical conflicts ○ Beneficence vs. nonmaleficence ○ Nonmaleficence vs. autonomy ○ Act vs. omission vs. intention of act!!!!! ○ Principle/Doctrine of double effect: Morally permissible to perform act with the intention to bring about a good result (e.g. pain relief) even if the foreseeable side-effect may cause serious harm (e.g. death). Legitimate act has undesirable consequences. ● Voluntary Requested by patient ● Nonvoluntary Patient can’t express ● Involuntary Against patient’s wishes ● General considerations/principles for management ○ Consider benefits and burdens of treatment ○ Consider consent, autonomy, capacity ○ If there are doubts about capacity or validity of an advance decision, err on side of preservation of life 9.7.
  • 46. End of Life: DNAR ● When to consider ○ CPR unlikely to be successful ○ Not in accord with recorded wishes of patient or advance decision (written, signed, witnessed and explicit, i.e. “even if life is at risk”) ○ +ve outcome would lead to poor quality of life ○ consider as part of advance care planning, when there is a risk of cardiorespiratory arrest ● Note: not in effect if reversible cause of arrest ● 2007 BMA guidance ○ No decision = in favour of CPR (unless patient refused, terminal phase of illness, burdens of treatment outweigh benefits) ○ Individual assessment, wherever possible advance planning ○ Patient’s views important, if no capacity seek views of relatives regarding patient’s wishes (although not binding) ○ Communication and information to the patient and his/her relatives are essential ○ DNAR only applies to CPR, not treatment ○ DNAR does not override clinical judgement if reversible cause of arrest 9.8.7.
  • 47. End of Life: Withdrawal of Treatment ● If requested by patient, must be respected (voluntary, informed, competent) or if advance decision ● Law distinguishes acts vs. omissions (deontological), switching off ventilator is withdrawal of treatment, not euthanasia ● English law gives autonomy greater weight than beneficence, unless no capacity, but always in best interest of the patient and NEVER with the motivation to cause death (it can be an unavoidable consequence). No capacity: ◉ MCA 2005 ● ♚ Airedale NHS trust v Bland 1993 ○ Withdrawal of life-sustaining treatment can be in the best interest of the patient if the burdens of treatment outweigh the benefits ○ Basic care must always be provided, only treatment can be withdrawn (treatment includes artificial nutrition and hydration ANH) 9.8.7.
  • 48. End of Life: Euthanasia ● Euthanasia INTENTIONALLY bringing about the death of a person through act or omission for his or her sake, ● Treatment WITH INTENTION to end life is inpermissible ● Issues ○ Beneficence vs. non-maleficence ○ Non-maleficence vs. respect for autonomy ○ Compatibility with duty of care ○ Capacity, consent ○ Principle of double effect ○ See general ethical principles at the end of life 9.8.7.
  • 49. End of Life: Suicide ● ◉ Suicide Act 1961 ○ Suicide decriminalised ○ BUT does not extend to assisted suicide: ■ Up to 14 years of prison! ■ However, prosecution only if public interest, which is determined according to the 2010 DPP* criteria, 6/16 of which summarised here: 6 IN FAVOUR: ● victim under 18 * consent ● victim to capacity or consent or request (counts for 3) * motivation = compassion ● victim physically able to commit suicide * prior dissuasion ● suspect stood to gain (not pure compassion) * minor reluctant encouragem. ● suspect assisted in more than one case * report to the police ● suspect a healthcare professional ● Issues ○ Disabled less free to take their own life? ○ Forces people with degenerative diseases to commit suicide earlier ● Management ○ Cannot lawfully give information about assisted suicide, e.g. in Switzerland (2010: unlikely for relatives to be prosecuted if accompanied) 9.8.7.
  • 50. End of Life Legal Decisions ● ◉ MCA 2005: if no capacity and not advance directive, then act in best interest of patient, where life- sustaining treatment concerned do not act with intention to cause death. ● ◉ Suicide Act 1961 ● ♚ Airedale NHS Trust v Bland 1992 ○ Withdrawal of artificial nutrition and hydration (ANH) from young man in vegetative state: burdens outweigh benefits (alternative view: vegetative state = no (best) interests) ○ Distinguished basic care (warmth, hygiene, .. incl. ORAL hydration) which must be provided from ANH which is treatment and can be withdrawn ● ♚ Dr Nigel Cox 1992 ○ KCl injection to elderly patient in pain Suspended sentence ● ♚ Dr David Moor 1999 ○ Giving lethal dose of morphine to “relieve pain”? ○ Dr Anne Prety 2001: MND, human right to die ● ♚ Re F ● Assisted dying for the terminally ill defeated in house of Lords 2006 (Lord Joffe’s assisted dying for the terminally ill bill) ● Switzerland: legal consequences for UK citizens travelling to die there ○ 2010 guidelines indicating that prosecution of relatives accompanying patient are unlikely to be prosecuted if good reasons (DPP policy to outweigh factors for and against public interest) 9.8.7.