Perspective of Palliative Care

PERSPECTIVE OF PALLIATIVE CARE
-Ns. Nur Fithriyanti Imamah, MBA-
Fe Ai Ma
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Young person with advanced disease….
Old people with chronic

and advanced disease….
Palliative Care Milestone in Nursing
1967- 1977-
Prior 1967 1976 1986
Modern The Medicare
Hospice Movement Hospice
Development and around the
Awareness of World
Hospice
Philosophy
from UK to US

(Prior 1967-1986)
1967 1982 1982 1986
Dr. Dame Cicely The WHO chose the WHO Published its
WHO created term “Palliative Care”
Saunders founded St. First definition of
Christopher’s an expert panel rather than “Hospice “Palliative Care”
Hospice, believing to develop Care” as the umbrella “The active total care
term (Foley, 2005).
that dying people guidelines for of patients whose
have the right to an Both palliative and disease is not
improved quality of the relief of hospice care provide responsive to
life, using pain cancer pain. comfort. But palliative curative treatment.
care can begin at
control and social (Betty, 2015) diagnosis, and at the
Control of pain, of
and emotional same time as other symptoms, and
support to achieve treatment. Hospice of psychological,
psychological and care begins after social, and spiritual
spiritual treatment of the care is the
contentment (Clark & disease is stopped and achievement of the
Graham, 2011). when it is clear that the best quality of life for
person is not going to patients and
survive the families”. (Betty,
illness. (Oxenham, 2015)
2014).
1987- 1997-
1996 2006 2017
Academic Advanced Palliative Care
Hospital Practice Nurse Integration
Setting of in Palliative
Palliative Care Care and
Developing
Standard for
Hospital Based
Palliative Care

2007- 2017: Palliative Care Integration
 Palliative care integration: WHO has advocated palliative care’s integration in
international strategies for cancer patients, for care of elderly, for children and
for patient with HIV/AIDS. “the solid facts of palliative care and better care of the
elderly “two monographs published by WHO. (WHO. 2010)
 Multidisciplinary and integrated care
 Multidisciplinary care is provided to patients and families in all of the above mentioned services.
Within the Network the following professional care providers are involved in integrated palliative
care: palliative care consultant, GPs with a special interest in palliative care, outpatient clinic
nurse, hospice nurse, hospice physician, physiotherapist, dietician, social worker, and psychologist.
Psychological support and bereavement services are also available within the network. (Jeroen,
2016)

Definition
"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."
This definition emphasizes QoL, not quantity and affirms

http://www.who.int/en/
that dying is normal part of the cycle of life. (WHO. 2010)
Changes in palliative care
 From care at the end of life to:
 Active management of progressive chronic disease (not just
malignancy)
 The majority of these deaths, however, occur after a long, progressively
debilitating chronic illness, such as cancer, cardiac disease, renal disease, lung
disease, or acquired immunodeficiency syndrome (AIDS).
Traditional vs Earlier

Target of Person with Palliative Care

Palliative Care Philosophy
Palliative care is increasingly viewed as essential component of comprehensive
care throughout the life course and as a fundamental right.
Palliative care seeks to prevent , relieve, reduce, or soothe the symptoms of
disease or disorder without effecting a cure.
Palliative care is both an approach to patient care that should be routinely
integrated with life-prolonging therapies and a model of speciality practice.
Palliative care specialists typically work in teams and usually are needed when the
disease is advanced, life expextancy is short, and problems become complex and
more urgent.
Randall and Downie (2006)
Palliative Care Philosophy
 The death is a part of life
 Understand the notion of the whole person
experienced terminal illness
 Views the patient’s family as client
The Palliative Care Approach NCPC (1997)
Vital
Vital and
and integral
integral part
part ofof all
all clinical
clinical practice.
practice. Informed
Informed byby aa
knowledge
knowledge ofof and
and practice
practice ofof palliative
palliative care
care principals
principals and
and
supported
supported by
by specialist
specialist palliative
palliative care
care

 Quality
Quality of
of life
life

 AA whole
whole person
person approach
approach

 Care
Care for
for both
both the
the dying
dying person
person and
and those
those that
that matter
matter to
to the
the
person
person

 Patient
Patient autonomy
autonomy and
and choice
choice
Principles underlying palliative care provision (NCPC 1997)

 ItIt isis the
the right
right of
of every
every person
person with
with aa life
life threatening
threatening illness
illness to
to receive
receive appropriate
appropriate
palliative
palliative care care wherever
wherever they
they are.
are.

 ItIt isis the
the responsibility
responsibility of
of every
every health
health care
care professional
professional to
to practice
practice the
the palliative
palliative
care
care approach,
approach, and
and to
to call
call in
in specialist
specialist palliative
palliative care
care colleagues
colleagues ifif the
the need
need
arises,
arises, as as an
an integral
integral part
part of
of good
good clinical
clinical practice
practice whatever
whatever the
the illness
illness or
or stage.
stage.
Approaches to Palliative Care
 Not a “one size fits all approach”
 Care is tailored to help the specific needs
of the patient
 Since palliative care is utilized to help
with various diseases, the care provided
must fit the symptoms.
Image courtesy of
What’s the different?
Supportive Palliative Comfort

Care Care Care

For Whom?
Remotely Progressive Life- Prospect of

Curable/ threatening “a cure” is
Incurable Illnesses largely non
existent

Hospice
Definition:
Hospice care is the support and care for persons in the final phases of an incurable disease so that they may live as
fully and comfortably as possible (NHPCO, 2000). Hospice also supports the surviving family through the dying and
bereavement process (Egan & Labyak, 2001). Hospice provides comprehensive palliative, medical and supportive
services across a variety of settings and is based on the understanding that dying is a part of the normal life cycle.
Care can be provided in the home, in residential facilities, long-term care facilities and other settings (i.e. prisons).
Eligibility for Hospice:

Enrollment is limited to those expected to die within six months.
The Medicare Hospice benefit has currently expanded its hospice service options so that patients/families can receive
end of life care long before the last six months of life to better meet the needs of patients dying from chronic
illnesses.
An additional option that has been made available to patients (and their families) who are actively in the dying
process or have been determined as terminal is that they can be designated as an inpatient hospice.
Principles of Hospice Care
* The Family is the unit of care
* Care involves an interdisciplinary approach to expert medical and nursing care, pain management,
and emotional and spiritual support
* Patient has the right to die pain-free and with dignity
* Loved ones will receive necessary support
* Focus is on caring, not curing
* Care is provided primarily in the home, but can also be provided in free-standing hospice facilities,
hospitals, and nursing homes
(ACS, 2004, p. 532)
Advance Directive
(also called a Living Will)
• An Advance Directive is a document that lets patients state their wishes about medical care in the event
that they develop a terminal or irreversible conditions and can no longer make their own medical decisions
(TxPEC, 2009).
• An Advance Directive (Living Will) becomes effective when

1. the patient’s physician certifies in writing that the patient has a terminal or irreversible condition,
and
2. after the patient’s physician writes a “do not resuscitate (DNR) order specifying the patients wishes
to withhold medical care.
3. The patient may revoke the Directive at any time.
• Hospitals are required by Medicare Conditions of Participation and JCAHO to inquire about Advanced
Directive status upon the patient’s admission and to instruct the patient about his/her option of having an
Advance Directive if so desired. If the patient has a Directive, the hospital is required to make it part of the
patient’s medical record. However, hospitals are not required to make the patient create an Advance
Directive or Power of Attorney for medical care. (TxPEC, 2009)
Core Aspects of Hospice Care
 Patient/family focused
 Interdisciplinary team care
 Provides a range of services:
– Interdisciplinary case management
– Pharmaceuticals
– Durable medical equipment
– Supplies
– Volunteers
– Grief support
Palliative vs. Hospice Care
Hospice is a “type” of palliative care for those who are at the

end of their lives.
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.
Image courtesy of
http://www.ersj.org.uk/content/32/3/796.full
Palliative Care is Universal
 Numerous governments have already adopted national palliative care
policies, including Australia, Canada, Chile, Costa Rica, Cuba, France,
Ireland, Norway, Spain, Uganda, South Africa and the United Kingdom.
Palliative Care in WPRO

The Western Pacific Regional Office (WPRO) represents the WHO
in 37 countries of Asia Pacific.
About a quarter (25%) of the countries in the WPRO region have
an established system (“approaching integration”) for palliative
care that encompasses the entire country or have services
typically in large cities or highly populated regions (“localized
provision”).
Palliative Care in WPRO
Countries with established systems
Australia
• In 1987, Ian Maddocks accepted the world’s first Chair in Palliative Care at Flinders University.
• Palliative care is recognized as a medical specialty in 2005.
• Around 320 palliative care services are operational.
Japan
• Palliative care standards were first introduced in 1997.
• Palliative care education is included in the curriculum of most medical schools in the country and all nursing
schools.
• 120 services related to palliative care are available country-wide.
Singapore
• 13 organizations providing palliative care.
• Palliative care module added to medical school curriculums.
Countries with established systems
Malaysia
• In 1998, the Government began requiring every district and general
hospital to introduce a palliative care provision.
Mongolia
• Palliative care incorporated into National health plan.
• Palliative care module included in medical school curriculum.
New Zealand
• A palliative care education program has been established for care
assistants.
• 41 services are currently delivering palliative care throughout the country.
Countries with localized provisions
The criteria to be classified as having a local provision
 China of palliative care include:
 South Korea
• Critical mass of activists in one or more locations
 Philippines
• Service established – often linked to home care
 Vietnam • Local awareness and/or support
• Sources of funding established (though may be
heavily donor dependent and relatively isolated from
one another, with little impact on wider health policy)
• Morphine available
• Some training undertaken by the hospice
organization
As well as meeting criteria of the lower level (capacity

building).
Countries with building capacity
 Brunei Darussalam The criteria to be classified as having building
 Fiji capacity focusing on the creation of palliative care
include:
 Papua New Guinea
• Presence of sensitized personnel
The countries are aiming to • Expressions of interest with key organizations (e.g.
create conditions for the APCA, HAU, IAHPC, Hospice Information)
development of programs • Links established (international) with service
focused on palliative care. providers
• Conference participation
• Visits to hospice-palliative care organizations
• Education and training (visiting teams)
• External training courses undertaken
• Preparation of a strategy for service development
• Lobbying: policymakers/health ministries
Countries with no palliative care
 American Samoa  Northern Mariana Islands
 Cook Islands  Palau
 French Polynesia  Pitcairn Islands
 Guam
 Samoa
 Kiribati
 Soloman Islands
 Laos
 Marshall Islands
 Tokelau
 Micronesia  Tonga
 Nauru  Tuvalu
 New Calendonia  Vanuatu
 Niue  Wallis and Futuna
How About Indonesia?????
Life Expected Count (2016)
Country/Province Age
Indonesia 70.90
East Kalimantan 73.68
DI Yogyakarta 74.71
Palliative Care in Indonesia (Milestone)
2014
• Most cancer
2013 treatments are
• National now covered
technical by public
2007 Guidance for health
palliative care insurance,
1999 • Minister of
National
Health, in cancer has
• The Indonesian been palliative care
enacted the
1992 Palliative Society
(Masyarakat Palliatif Regulation published guidelines
have been
No
1989
Indonesia, or MPI) was
• Palliative established as a non- 812/Menke revised.
profit organization. MPI s/SK/VII/20 (Christantie,
Care members are people 2015)
Service involved in the provision 07 on
• Introduction of of palliative care, Palliative
palliative care as began including physicians, Care
part of the national nurses, pharmacists, Agenda
cancer control psychologists, social
program focused workers, religious
on pain personnel and
management for volunteers.
cancer patients and
palliative care.
33
Palliative Care in Indonesia
There is no standardized operating procedure for the provision of palliative care in Indonesia and no
quality indicators guiding the organization of palliative care in hospitals, in order to allow evaluation of
the implementation of palliative care in Indonesian hospitals (Effendy, 2015 (a))
Which one is Correct about Palliative Care?
Patient & Healthcare

Family Professional
Centered Centered

Routine Supportive
Care Care
Short Term Long Term

Dementia Healthy
Elderly Elderly
All
Threatening Limited to
Disease Cancer
Late Stage Earlier

of End of Diagnosis to
Life Bereavement

Case Study
 Mr. Ray, a Patient with Prostate Cancer
Mr. Ray, a 57-year-old man with far advanced prostate cancer
and rapidly failing pulmonary status, wanted every measure
to be used to maintain life, including a tracheostomy and
respirator. He had a wonderful and caring family who wanted
whatever he wanted. Staff members felt that they were doing
harm by introducing these extraordinary measures but
complied with the patient’s wishes.

Case Study
 Mr. Ray had fought “the odds” on several previous occasions and
expected to do so again. He remained on a respirator for 6 weeks,
during which time he was alert and cognitively intact. What the
staff did not realize was that during this time the man was
completing important work. He sold his business, which he
wanted to do before he died so that his wife would not be
burdened with this task after his death. Once this goal was
completed, Mr. Ray gave his physician the “thumbs up” sign and
indicated that he was ready to come off the respirator.

Case Study
 The family was at peace with this decision, but the young physician who
was responsible for his care and had become very close to the patient and
family over the weeks struggled with the concept of prolonging death
versus hastening death if the respirator was withdrawn. Some of the
nursing staff were similarly troubled. It would have been easier not to
have started the treatment than to start and then withdraw it. An
experienced palliative care nurse mentored the young physician and
nurses through their personal ethical struggles and stayed by the
physician’s side as he administered the sedative drug and withdrew the
respirator. The patient died 2 days later; a family member was with him all
the time. The young physician expressed relief that the patient had not
died “right away” and said he felt more comfortable for having “not
crossed the line.”
REFERENCES
 The Journal of Palliative Medicine, “The Growth of Palliative Care
Programs in United States Hospitals” ; published in Volume: 8 Issue
6: December 13, 2005.
 http://www.wpro.who.int/about/about.htm
 http://cuidadospaliativos.org/archives/Mapping%20levels%20of
%20palliative%20care%20development,%20a%20global%20view.pdf
 Lancaster University (United Kingdom) published a document
entitled “Mapping levels of palliative care development: a global
view”. This document, from November 2006
REFERENCES
American Nurses Association and Hospice and palliative nurses Association. Palliative nursing: scope and standards of practice-An Essential
Resources for hospice and palliative Nurses. 5th ed. Silver spring, MD: American Nurses Association and Hospice and palliative
Association 2014.
Betty R, Nessa C., Judith A., 2015, oxford Textbook of Palliative Nursing” fourth Edition, Oxford.
Clark, D., & Graham, F. (2011). Evolution and change in palliative care around the world. Medicine, 39(11), 636-638.
Colledge NR, Ralston SH, Penman ID, eds. Davidson's Principles and Practice of Medicine. 22nd ed. Philadelphia, PA: Elsevier; 2014: chap 12.
D., Patrictk J., Betty R, 2016, Advanced Practice Palliative Nursing., Oxford.
Constante D., Patrict j., 2016., History of the Advanced Role in Palliative Care., Oxford.
Diane E. Meier and Brynn Bowman 2017 Journal of the American Society on Aging The Changing Landscape :of Palliative Care Vol. 41.No. 1.
Dumanovsky, T., et al. 2015. “The Growth of Palliative Care in U.S. Hospitals: A Status Report.” Journal of Palliative Medicine 19(1): 8–15.
Florence Wald, Connecticut Women's Hall of Fame. Accessed November 13, 2008.
Foley, Kathleen M The Past and Future of Palliative Care the Hastings Center Report; Nov/Dec 2005; ProQuest pg. S42.Hospice and Palliative
Nurses Association. Standards for Clinical Education of Hospice and Palliative Nurses 2006 available at
https://www.hpna.org/FileMaintenance_View.aspx?ID=2157 accessed December 25,2017.
Institute of Medicine of the National Academies. The future of Nursing: Leading Change, Advancing Health. Available at
hhtp://ww.iom.edu/Reports/2010/The-future-of nursing-leading-change-advancing-health.aspx. accessed December 2017
National Quality Forum. A National Framework and Preferred practices for Palliative Care Quality. Washington, DC: NQF:2013.
National Institute of Health. NIH State of the Science Conference Statement on Improving End-of Life Care. NIH Consent State Sci Statement .
2004:21(3):1-26.
National Consensus Project for Quality Palliative Care. Clincal Practice Guidelines for Quality Palliative care 2013. Available at
hhtp://www.nationalconsensusproject.org/NCP_Clinical_Practice_Guidlines_3
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PERSPECTIVE OF PALLIATIVE CARE

-Ns. Nur Fithriyanti Imamah, MBA-

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Old people with chronic

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This definition emphasizes QoL, not quantity and affirms

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Supportive Palliative Comfort

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Remotely Progressive Life- Prospect of

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Eligibility for Hospice:

* The Family is the unit of care

* Patient has the right to die pain-free and with dignity

* Loved ones will receive necessary support

* Focus is on caring, not curing

• An Advance Directive (Living Will) becomes effective when

Hospice is a “type” of palliative care for those who are at the

Palliative care can be provided from the time of diagnosis.

Palliative care can be given simultaneously with curative

Both services have foundations in the same philosophy of

Palliative Care in WPRO

As well as meeting criteria of the lower level (capacity

Patient & Healthcare

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Short Term Long Term

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Late Stage Earlier

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