Palliative care and end of life care

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
26. 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
27. 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
28. 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.
29. 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
30. 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
31. 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.
32. 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
33. WHOSE RESPONSIBILITY?
34. 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)
35. 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
36. 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
37. 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
38. 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
39. 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
40. 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
41. • 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
42. 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
43. 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
44. 2. Symptom management treating symptoms other
than pain such as nausea, weakness, bowel and bladder
problems, mental confusion, fatigue, and difficulty
breathing
45. 3. Emotional and spiritual support important for both
the patient and family in dealing with the emotional
demands of critical illness
46. 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.
47. • 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
48. Management of dyspnea
49. • Fatigue – – Sleep hygiene – Gentle exercise –
Address potentially contributing factors (e.g., anaemia,
depression, side effects of medications)
50. • 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
51. • 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
52. • 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
53. • Pruritus – Moisturize skin – Try specialized anti-itch
lotions – Apply cold packs – Counter stimulation,
distraction, and relaxation.
54. Medications for Constipation
55. • Diarrhoea – Evaluate/treat if obstipation – Assess
and treat infection – Dietary modification • Depression – –
Psychotherapy – behavioural techniques
56. • Anxiety – Psychotherapy (individual and family) –
behavioural techniques • Agitation/terminal restlessness –
Evaluate for organic or drug causes – Educate family –
Orient and reassure child – provide calm.
57. Medications for the Management of Delirium
58. 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
59. 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
60. 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
61. 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
62. 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
63. 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
64. 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
65. 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.
66. 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
67. 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
68. 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
69. 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
70. 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
71. Barriers to the development of palliative care include •
poverty • population density • geographic distances •
opioid availability • work force development and • limited
national palliative care policy
72. Palliative care developments around the world • The
estimated number of persons needing palliative care is
just over 33 million
73. • 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.
74. • 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.
75. • 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
76. 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
77. • 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
78. 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
79. Examples of suggested essential drug list for palliative
care
80. • WHO has produced guidelines for their handling •
Any essential drug list for palliative care will include opioid
drugs
81. • 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
82. • 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
83. • Accessibility: opioids should be available in locations
that will be accessible to as many patients as possible
84. 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
85. 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
86. 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
87. Terminally ill patients
88. 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
89. • 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
90. • 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
91. • HOW IS PALLIATIVE CARE IS DIFFERENT FROM
HOSPICE CARE?
92. • Thank you