Department of Surgery,Kathmandu Medical College

1. • Palliative care and End-of-Life care

2. INTRODUCTION
• Palliative care developing as an areas of special
clinical importance throughout the world
• The modern hospice relatively recent concept
that originated and gained momentum in the
United kingdom after the founding of St.
Christopher‘s hospice in 1967
• It was founded by Dame Cicely Saundersthe
founder of modern hospice movement.

3. • Palliative medicine has been recognized as a
speciality
– in UK since 1987
– in Australia and New Zeland since 1988
– and more recently in Canada.
•

4. Definition of palliative care

5. “ An approach that improves the quality of life of
patients and their families facing the problems
associated with life-threatening illness, through the
prevention and relief of suffering by means of early
identification and impeccable assessment and
treatment of pain and other problems, physical,
psychosocial and spiritual "

6. ‘to mitigate the sufferings of the patient, not to
effect a cure’
(Macpherson, 2002)

7. • Palliative care aims to relieve symptoms and
improve the quality of living and dying for a
person and/or family living with a life
threatening illness

8. • Palliative care strives to help individuals and
their families
– address physical, psychological, social, spiritual
and practical issues and associated expectations,
needs, hopes and fears
– prepare for and manage life closure and the dying
process and
– cope with loss and grief during the illness and
bereavement

9. TERMINOLOGIES
• Autonomy – the state of being self- governed
Thinking and acting independently without
outside influence and direction
• Bereavement – ―the state of having suffered
the death of someone significant‖
(CPCA,2001)

10. • Caregiver – anyone who provides care
– Care givers are people who are willing to listen to ill
persons and responds to their individual experiences
• Formal caregivers are members of an
organization and accountable to defined norms of
conduct and practice
• They may be professionals, support workers, or
volunteers.

11. • Informal caregivers are not members of an
organization
– They [usually] do not have formal training, and
are not accountable to norms of conduct or
practice
– They may be family members or friends

12. • Dignity – To treat individuals with respect,
esteem and regard
• Family – Whomever the person says is his or
her family
– The family may include relatives, partners, friends
and pets

13. • Grief – Reactions (physical, emotional,
behavioral, spiritual) experienced in
anticipation of, during and after a loss
• Needs – Issues that patients and caregivers
mutually agree require attention in the plan of
care.

14. NEED OF PALLIATIVE CARE
• Cancer burden: global picture.
• Number of new cancer cases (in millions)
• Parkin, D.M., Bray, F.I., and Devesa, S.S. (2001). Cancer burden in the year 2000. The global picture.
European Journal of Cancer 37, 4–66.
2000 2020 2050
world 10.6 15.3 23.8
Developing
countries
5.4 9.3 17.0
Developed
countries
4.6 6.0 6.8

15. NEED OF PALLIATIVE CARE
• Size of problem
• Estimated number of people who would need palliative care (in
millions)
• It can be estimated that approximately 60% of the dying need PC
Annual deaths globally 56
Annual deaths in developing countries 44
Annual deaths in developed countries 12
Estimated numbers needing palliative carea 33

16. NEED OF PALLIATIVE CARE
• Since death also affects family members and
close companions, perhaps 1 to 2 persons
giving care and support for every one who
dies, then a conservative figure might be 100
million people who would benefit from the
availability of basic palliative care

17. • The word “palliative” Latin word ‘pallium’
meaning to cloak or cover
• In the context of how cancer was perceived and
poorly diagnosed from the middle ages until the
latter half of the 20th century, it is an appropriate
description
• Even today, there are many cancers that grow
unseen and without symptoms for a considerable
time before the person seeks help

18. • The term "palliative care" is increasingly used
with regard to diseases other than cancer such
as
– chronic, progressive pulmonary disorders
– renal disease
– chronic heart failure
– HIV/AIDS and
– progressive neurological conditions

19. • Palliative care is specialized medical care for
people with serious illnesses
• focuses on providing patients with relief from
the symptoms, pain, and stress of a serious
illness—whatever the diagnosis
• Goal improve quality of life for both the
patient and the family

20. Philosophy of Palliative Care
• To give people with life limiting illnesses a
reason to hope and a feeling of greater self-
confidence and dignity
• embrace a holistic approach to care giving,
which respects the dignity and worth of each
person
• believe in creating an environment that
nurtures the physical, intellectual, social and
spiritual wellbeing of those in our care‖

21. Philosophy…
• Palliative or comfort care recognizes that
death is a normal part of life and strives to
prepare patients and their families so we
can all die on our own terms

22. Philosophy…
• From the start of a serious or terminal illness,
practitioners reduce the burden on family
caregivers by identifying and providing for the
needs of pt and pt family
• These needs may be
– physical
– emotional
– social or spiritual

23. SCOPE
• provides relief from pain, shortness of breath,
nausea and other distressing symptoms
• affirms life and regards dying as a normal
process
• intends neither to hasten nor to postpone
death
• integrates the psychological and spiritual
aspects of patient care

24. SCOPE..
• offers a support system to help patients live as
actively as possible
• offers a support system to help the family
cope
• uses a team approach to address the needs of
patients and their families

25. SCOPE..
• will enhance quality of life
• is applicable early in the course of illness
– in conjunction with other therapies that are
intended to prolong life, such as chemotherapy or
radiation therapy

27. PRINCIPLES OF PALLIATIVE CARE
• Respect the likes and dislikes, goals choices of
the dying person
• Integrate the psychological and spiritual
aspects of patient care
• Offer a support system to help patients live as
actively as possible until death

28. PRINCIPLES…
• Patient centered rather than disease focused
• Concerned with healing rather than curing
• Affirms life & regards dying as normal process
i.e as a part of the life cycle.
• Builds ways to provide excellent care at the
end of the life

29. PRINCIPLES…
• through education of care providers,
appropriate health policies and adequate
funding from insurers and the governemnt
• Provides relief from pain and other distressing
symptoms
• Death accepting but also life enhancing
• Intends neither to hasten nor post pone
death.

30. PRINCIPLES…
• Adds life to days and not days to life
• Partnership between the patient and the care
providers
• Supports the need of the family members
• Helps them in gaining access to needed health
care providers & appropriate care settings
• Involving various kinds of trained providers in
different setting tailored to the needs of the
patient and his or her family

31. PRINCIPLES…
• Offers support system to help the family to
cope during the patients illness and in their
own bereavement, including the needs of
children
• Uses a team approach to address the needs of
patients and their families including
bereavement, counseling, if indicated
• Enhance the quality of life, may also positively
influence the course of a patients illness

32. What is the goal of Palliative Care?
The goal is to improve the quality of life for
individuals who are suffering from severe
diseases.
Offering a diverse array of assistance and
care to the patient.

33. Goals of palliative care
• Achievement of the best possible quality of
life for patients and their families regardless of
the stage of the disease or the need for other
therapies
• Three essential component of palliative care

34. WHOSE RESPONSIBILITY?

35. It is the right of every person with a life-threatening
illness to receive appropriate palliative care
wherever they are
(NICE, 1998)
Palliative care is the responsibility of all health and
social care professionals delivering care
(NICE, 2004)

36. Who Provides Palliative Care?
 Usually provided by a team of individuals
 Interdisciplinary group of professionals
 Team includes experts in multiple fields:
 Doctors
 Nurses
 social workers
 Massage therapists
 Pharmacists
 nutritionist

37. Cure/Life-prolonging
Intent
Palliative/
Comfort Intent
D
E
A
T
H
“Active
Treatment”
Palliative
Care
D
E
A
T
H
EVOLVING MODEL OF PALLIATIVE CARE

38. Potential Palliative Care
Interventions
Control of
• Pain
• Dyspnea
• Nausea
• Vomiting
Support
• Emotional
• Spiritual
• Psychosocial
CPR
Ventilation
Highly
burdensome
Interventions
Infections
Transfusions
Hypercalcemia
Dialysis
Tube Feeding
Palliative
Generally
Not Palliative
Variable

39. A palliative approach
Aims
• to improve the quality of life for individuals
with a life-limiting illness and their families, by
reducing their suffering through early
identification, assessment and treatment of
pain, physical, cultural, psychological, social
and spiritual needs

40. Myths about palliative care
• Residents will become addicted to pain relief drugs
• The palliative approach is only provided in hospital
type settings
• You need to be an expert to be able to provide the care
• You need to be a nurse to be able to provide the care
• Applying the palliative approach will increase the care
worker‘s work load
• The palliative approach is only provided to residents
with cancer
• The palliative approach costs more

41. PC team…
• Potential members of the interdisciplinary team
for a palliative approach may include but not be
limited to
• Care assistants
• General Practitioners
• Generalist nurses
• Specialist nurses
• Aboriginal health workers
• Trained volunteers and their coordinators
• Pharmacists

42. • Chaplains/pastoral care workers Recreation activity officers
• Pain specialists
• Allied health practitioners
• Specialist physicians
• Community/palliative services
• Psychologists/psychiatrists
• Specialist palliative service providers
• Managers
• Home attendants
• Physical, occupational, art, play, music therapist
• Bereavement coordinators

43. SERVICES PROVIDED BY PALLIATIVE
CARE
• Interdisciplinary team care- nursing services,
medical, social, counseling, home health aide
• Bereavement counseling
• Dietary counseling
• Physical therapy
• Occupational therapy
• Speech therapy
• Investigations and drugs
• Durable medical equipments and supplies

44. Palliative Care Patient Support Services
Three categories of support
1. Pain management vital for comfort and to
reduce patients‘ distress
Health care professionals and families can
collaborate to identify the sources of pain
and relieve them with drugs and other forms
of therapy

45. 2. Symptom management treating symptoms
other than pain such as nausea, weakness,
bowel and bladder problems, mental
confusion, fatigue, and difficulty breathing

46. 3. Emotional and spiritual supportimportant
for both the patient and family in dealing with
the emotional demands of critical illness

47. FEW INTERVENTIONS
• Pain –
– limit unnecessary painful procedures
– sedation and giving pre-emptive analgesia prior to a
procedure (e.g., including sucrose for procedures in
neonates)
– Address coincident depression, anxiety, sense of fear
or lack of control
– Consider guided imagery, relaxation, hypnosis,
art/pet/play therapy, acupuncture/acupressure,
biofeedback, massage, heat/cold, yoga,
transcutaneous electric nerve stimulation, distraction.

48. • Dyspnoea or air hunger
– Suction secretions if present
– positioning, comfortable loose clothing, fan to
provide cool, blowing air
– Limit volume of IV fluids, consider diuretics if fluid
overload/ pulmonary oedema present
– Behavioural strategies including breathing
exercises, guided imagery, relaxation, music

49. Management of dyspnea

50. • Fatigue –
– Sleep hygiene
– Gentle exercise
– Address potentially contributing factors (e.g.,
anaemia, depression, side effects of medications)

51. • Nausea/vomiting –
– Consider dietary modifications (bland, soft, adjust
timing/ volume of foods or feeds)
– Aromatherapy: peppermint, lavender;
acupuncture
– Constipation - Increase fibres in diet, encourage
fluids

52. • Oral lesions/dysphagia
– Oral hygiene
– appropriate liquid, solid and oral medication
formulation (texture, taste, fluidity)
– Treat infections, complications (mucositis,
pharyngitis, dental abscess, esophagitis)
– Orophayngeal motility study and speech (feeding
team) consultation

53. • Anorexia
– Manage treatable lesions causing oral pain,
dysphagia, and anorexia
– Support caloric intake during phase of illness
when anorexia is reversible
– Acknowledge that anorexia is intrinsic to the dying
process and may not be reversible
– Prevent/treat coexisting constipation

54. • Pruritus
– Moisturize skin
– Try specialized anti-itch lotions
– Apply cold packs
– Counter stimulation, distraction, and relaxation.

55. Medications for Constipation

56. • Diarrhoea
– Evaluate/treat if obstipation
– Assess and treat infection
– Dietary modification
• Depression –
– Psychotherapy
– behavioural techniques

57. • Anxiety
– Psychotherapy (individual and family)
– behavioural techniques
• Agitation/terminal restlessness
– Evaluate for organic or drug causes
– Educate family
– Orient and reassure child
– provide calm.

58. Medications for the Management of
Delirium

59. ELEMENTS OF PALLIATIVE CARE
1.PRIMARY GOAL: The primary goal is to prevent
and relieve sufferings imposed by disease and
their treatment, achievement of best possible
quality of life for patients and their families
regardless of the stage of the disease or need
for other therapies

60. 2.PATIENT POPULATION: Patients of all ages
experiencing a debilitating chronic or life
threatening illness, condition or injury
3.PATIENT AND FAMILY CENTERED CARE: The
uniqueness of each patient and family is
respected
The patient family constitute the unit of care

61. 4.TIMING OF PALLIATIVE CARE: It ideally begins
at the time of diagnosis of a life threatening or
debilitating condition and continues through
cure, or until death and into the family‘s
bereavement period

62. 5.COMPREHENSIVE CARE: Palliative care
employs multidimensional assessment to
identify and relieve sufferings through the
prevention or alleviation of physical,
psychological, social and spiritual distress

63. 6.INTERDISCIPLINARY TEAM: Team work is an
integral part of the philosophy of palliative
care
Require the expertise of various providers in
order to adequately assess and treat the
complex needs of seriously ill patients and
their families

64. 7. COMMUNICATION SKILLS: Effective
communication skills are requisite in palliative
care
These includes appropriate and effective sharing
of information, active listening, determination of
goals and preferences, assistance with medical
decision making, and effective communication
with all individuals involved in the care of
patients and their families

65. 8. SKILL IN CARE OF THE DYING AND BEREAVED: Team
must be knowledgeable and skilled in providing care
for the dying and the bereaved
9.CONTINUITY OF CARE ACROSS SETTINGS: Palliative care
is integral to all health care delivery system settings
(hospital, emergency dept, nursing homes, home care,
assisted living facilities, outpatient and non traditional
environments such as schools)
The palliative care team collaborates with professional
and informal care givers in each of these settings

66. 10. EQUITABLE ACCESS: Palliative care teams should work
toward equitable access to palliative care across all
ages and patient populations, all diagnostic categories,
all health care settings including rural communities,
and regardless of race, ethnicity, sexual preferences or
ability to pay
11. QUALITY IMPROVEMENT: Palliative care services are
committed to the pursuit of excellence and high quality
of care which enhances the quality of life.

67. Benefits of PC
• palliative approach offers many benefits to the
residents, their families and the health care team
• Some of these are:
– reducing potential distress to residents and their families
caused by a transfer to an acute care setting
– reducing the admission and/or transfer of residents to
acute care facilities as care staff develop the skills to
manage the palliative care residents
– increasing the involvement of the resident and their family
in the decision making about their care

68. Benefits…
• encouraging open and early discussion on
death and dying
• allowing for advance care planning
• providing opportunities, especially for
improved control of pain symptoms, in a
setting that is familiar to the resident
• offering the resident and family consistent and
continuous care

69. What does Palliative Care Provide to
the Patient?
• Helps patients gain the strength and peace of
mind to carry on with daily life
• Aid the ability to tolerate medical treatments
• Helps patients to better understand their
choices for care

70. PALLIATIVE CARE PLAN
• Palliative care plan includes
– care goals
– symptom management
– advance care planning
– financial planning
– family support
– spiritual care
– functional status support and rehabilitation
– co morbid disease management

71. BARRIERS IN AVAILING PC
• Inadequate training of health care personnel
in symptom management & other End of life
skills
• Inadequate standards of care
• Lack of accountability in the care of dying
patients
• Lack of appropriate information & resources
• Lack of investment in research pertaining to
palliative & end of life care

72. Barriers to the development of palliative care
include
• poverty
• population density
• geographic distances
• opioid availability
• work force development and
• limited national palliative care policy

73. Palliative care developments around
the world
• The estimated number of persons needing
palliative care is just over 33 million

74. • The rise of hospice and palliative care in its
distinctly modern guise (combining clinical
care, education, and research) is generally
traced to the late 1950s and early 1960s.

75. • A 1999 listing of palliative care organizations
with a global perspective(43) also includes
• British Aid for Hospices Abroad
• the Hospice Education Institute
• WHO Collaborating Centre for Palliative Cancer
Care, Oxford
• Other groups include WHO experts and
international collaborators and WHO
collaborating centres in Milan, Saitama, and
Wisconsin.

76. • It is estimated that hospice or palliative care
services now exist, or are under development, on
every continent of the world, in around 100
countries
• The total number of hospice or palliative care
initiatives is in excess of 8000 and these include
– inpatient units
– hospital-based services
– community-based teams
– day care centres, and
– other modes of delivery

77. International associations and
initiatives in support of hospice-
palliative care
1973 International Association for the Study of Pain, founded Issaquah,
Washington, USA
1976 First International Congress on the Care of the Terminally Ill, Montreal,
Canada
1980 International Hospice Institute, became International Hospice Institute and
College (1995) and International Association for Hospice and Palliative Care
(1999)
1982 World Health Organization Cancer Pain and Palliative Care

78. •
1990 Hospice Information Service, founded at St Christopher‘s Hospice,
London, UK
1998 • 1998 - Poznan Declaration leads to the foundation of the Eastern and
Central European Palliative Task Force (1999)
1999 Foundation for Hospices in Sub-Saharan Africa founded in USA
2000 Latin American Association of Palliative Care founded
2001 Asia Pacific Hospice Palliative Care Network founded
2002 UK Forum for Hospice and Palliative Care Worldwide founded by Help the
Hospices

79. Asia Pacific region
• Protocols for the introduction of the WHO
three-step analgesic ladder were first
introduced in China in 1991, leading to
increased opioid use and greater interest in
pain and palliative care
• In Japan, cancer is the principal cause of
death, accounting for about 295 000 deaths in
2000

80. Examples of suggested essential drug
list for palliative care

82. • WHO has produced guidelines for their
handling
• Any essential drug list for palliative care will
include opioid drugs

83. • Legal issues: doctors, nurses, and pharmacists
should be empowered legally to prescribe,
dispense, and administer opioids to patients
in accordance with their needs
• Accountability: opioids must be dispensed for
medical use only, with responsibility in law

84. • Prescription: a prescription for opioids should
contain at least the following information:
– patient‘s name
– date of prescription
– drug name, dosage, strength and form, quantity
prescribed
– instructions for use
– the doctor‘s name and business address
– the doctor‘s signature

85. • Accessibility: opioids should be available in
locations that will be accessible to as many
patients as possible

86. Palliative vs. Hospice Care
• Hospice is a “type” of
palliative care for those who
are at the end of their lives.
• Division made between these
two terms in the United
States

87. Palliative vs. Hospice Care
• Palliative care can be provided from the time
of diagnosis
• Palliative care can be given simultaneously
with curative treatment
• Both services have foundations in the same
philosophy of reducing the severity of the
symptoms of a sickness or old age
• Other countries do not make such a
distinction

88. HOSPICE CARE
• Hospice refers to a philosophy of care that
seeks to support dignified dying or a good
death experience for those with terminal
illness
• It involves a core inter disciplinary team of
professionals and volunteers who provide
medical, psychological and spiritual support
for the patients and family

89. Terminally ill patients

91. HISTORICAL PERSPECTIVES OF
HOSPICE CARE
• The term first developed from the word
hospitality by a physician Dame Cicely Saunders
in the year 1960 for dying patients, who is the
founder of the First modern hospice
St.Christopher‘s in a residential suburb of London
• 1969 – Psychiatrist Elizabeth Kubler Ross
explained about 5 stages of death in his book
―on death and dying‖ which emphasis the need
of death and dying

92. • Hospice care is a type of palliative care for
people who are in their final weeks or months
of life
• Palliative care is for a person of any age,
whether or not his or her illness is terminal

93. • Today, palliative care can help anyone who has
a serious illness
• Palliative care could help pt manage
symptoms or side effects of treatment so that
he/she will feel better

94. • HOW IS PALLIATIVE CARE IS DIFFERENT FROM
HOSPICE CARE?

97. • Thank you