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Palliative Care

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WHY PALLIATIVE CARE IS

AN ESSENTIAL FUNCTION
OF PRIMARY HEALTH CARE
© World Bank/Curt Carnemark
WHY PALLIATIVE CARE IS
AN ESSENTIAL FUNCTION
OF PRIMARY HEALTH CARE
WHO/HIS/SDS/2018.39

© World Health Organization 2018. Some rights reserved. This work is available under the HYPERLINK “https://creativecommons.org/licenses/by-
nc-sa/3.0/igo” CC BY-NC-SA 3.0 IGO licence.

Acknowledgements

This document was produced as part of the Technical series on primary health care on the occasion of
the Global Conference on Primary Health Care under the overall direction of the Global Conference
Coordination Team, led by Ed Kelley (WHO headquarters), Hans Kluge (WHO Regional Office for Europe)
and Vidhya Ganesh (UNICEF). Overall technical management for the Series was provided by Shannon
Barkley (Department of Service Delivery and Safety, WHO headquarters) in collaboration with Pavlos
Theodorakis (Department of Health Systems and Public Health, WHO Regional Office for Europe).

This document was produced under the technical direction of Marie-Charlotte Bousseau. The principal
writer was Eric Krakauer, Director of the Global Palliative Care Program at Massachusetts General Hospital
and Associate Professor of Medicine and of Global Health and Social Medicine at Harvard Medical School,
USA.

We also acknowledge contributions from Jim Cleary (University of Wisconsin, USA), Suresh Kumar
(Institute of Palliative Medicine, Kerala, India), Sébastien Moine (University of Edinburgh, Scotland), Hibah
Osman (Balsam Hospice, Lebanon), Adriana Osorio (Ministry of Health of Costa Rica), Mark Stoltenberg
(Massachusetts General Hospital and Harvard Medical School, USA).

Valuable comments and suggestions were made by WHO collaborating partners and regional and country
office staff, in particular, Cherian Varghese and Ghazanfar Khan (WHO Headquarters).

The views expressed in this document do not necessarily represent the opinions of the individuals
mentioned here or their affiliated institutions.
Introduction
World Health Assembly Resolution 67.19 states
that universal access to palliative care – the
prevention and relief of suffering due to serious or
life-threatening health problems or their treatment
– is an ethical imperative: “it is the ethical duty
of health care professionals to alleviate pain and
suffering, whether physical, psychosocial or spiritual,
irrespective of whether the disease or condition
can be cured … ”, and “palliative care is an ethical
responsibility of health systems … ” (1). The Health
Assembly also asserted that integration of palliative
care into public health care systems is essential for
achievement of Sustainable Development Goal
(SDG) 3.8 (universal health coverage, UHC) and
that this integration is especially important “at
the primary care level”. How can this ethically
imperative integration be achieved? What changes
are needed? And what will it cost?

1
What palliative care entails
WHO defines palliative care as the prevention and relief of suffering of adult and paediatric
patients and their families facing the problems associated with life-threatening illness (2).
These problems include physical, psychological, social and spiritual suffering of patients,
and psychological, social and spiritual suffering of family members. Palliative care (3):

• e ntails early identification and impeccable assessment and treatment of these


problems;
• e nhances quality of life, promotes dignity and comfort, and may also positively
influence the course of illness;
• p
 rovides accompaniment for the patient and family throughout the course of illness;
• s hould be integrated with and complement prevention, early diagnosis and treatment
of serious or life-limiting health problems;
• is applicable early in the course of illness, in conjunction with other therapies that
are intended to prolong life;
• p
 rovides an alternative to disease-modifying and life-sustaining treatment of
questionable value near the end of life, and assists with decision-making about use
of life-sustaining treatment;
• is applicable to those living with long-term physical, psychological, social or spiritual
sequelae of serious or life-threatening illnesses or of their treatment;
• a ccompanies and supports bereaved family members after the patient’s death, if
needed;
• s eeks to mitigate the pathogenic effects of poverty on patients and families, and
seeks to protect them from suffering financial hardship due to illness or disability;
• d
 oes not intentionally hasten death, but provides whatever treatment is necessary
to achieve an adequate level of comfort for the patient in the context of the
patient’s values;
• s hould be applied by health care workers at all levels of health care systems,
including primary care providers, generalists and specialists in many disciplines and
with various levels of palliative care training and skill, from basic to intermediate to
specialist;
• e ncourages active involvement by communities and community members;
• s hould be accessible at all levels of health care systems and in patients’ homes; and
• improves continuity of care and strengthens health systems.
The specific types and severity of suffering vary by geopolitical situation, socioeconomic
conditions and culture. People in low- and middle-income countries (LMICs) often endure
less healthy social conditions. They also typically have less access to prevention, diagnosis
and treatment of health problems, to social supports and to specialized services of many
kinds, than people in high-income countries. Palliative care should never be considered
a substitute for prevention, diagnosis and treatment of common causes of suffering and
death such as cancer, drug resistant tuberculosis (TB), cardiovascular disease or mental
illness, and palliative care workers have a responsibility to advocate for these interventions
wherever they are not yet accessible (3). However, failure to integrate palliative care with
disease prevention, diagnosis and treatment is indefensible. Planning and implementation
of palliative care services must be based on assessment of the types and extent of
inadequately prevented or relieved physical, psychological, social or spiritual suffering (4,5).

3
Access to palliative care
Despite compelling evidence of a huge burden of remediable
suffering, and of the effectiveness of palliative care to relieve
suffering, palliative care is rarely accessible in LMICs (6). Inequality
of access to palliative care is one of the largest disparities in global
health care (4). Various barriers have impeded the development
and accessibility of palliative care services. A major barrier is a
misunderstanding of what constitutes palliative care; in particular, it
is not always understood that palliative care is:

• n
 ot only for the dying, but for any patient suffering in
association with serious or life-threatening health problems;
• n
 ot an alternative to disease prevention and treatment but
should be integrated with them.
Additional barriers to the development and accessibility of palliative
care include:

• lack of a national palliative care policy, a national palliative


care strategic plan and national palliative care clinical
guidelines in many countries;
• lack of basic, intermediate and specialist training
programmes in palliative care;
• lack of staff positions in hospitals and primary care centres
that include palliative care as an official responsibility, and
that enable clinicians with appropriate training to be paid
for practising palliative care;
• lack of insurance coverage for palliative home care; and
• e xcessive fear of opioid side-effects, addiction and diversion
(opiophobia), resulting in excessively restrictive opioid
prescribing regulations.
Throughout the world, but especially in LMICs, most people in need
of palliative care are at home and cannot easily travel beyond their
communities; also, most people prefer to die at home. Therefore, it
is important that palliative care be accessible in the community and
in patients’ homes. Further, most suffering due to serious or life-
threatening health problems can be relieved with inexpensive, safe
and effective medicines and equipment prescribed by any primary
care physician, clinical officer, assistant doctor or nurse practitioner
with basic palliative care training (6,7). It is neither feasible
nor necessary for most palliative care in LMICs to be provided
by palliative care specialist physicians. Accordingly, the WHO
framework on integrated, people-centred health services, adopted
by the World Health Assembly in 2016, asserts that palliative care is
an essential function of primary health care (PHC) (5).

4
Overlapping
principles
of PHC1 and
palliative care
The inseparability of PHC and palliative care is
evident from recent international documents on
PHC (8,9,10). In 2009, World Health Assembly
resolution WHA62.12 reaffirmed the principles
of PHC – including equity, solidarity, social
justice, universal access to services, multisectoral
action, decentralization and community
participation – as the basis for strengthening
health systems (11). All of those principles of
PHC are also principles of palliative care. This
resolution also emphasized putting people
at the centre of health care by implementing
comprehensive PHC services – including health
promotion, disease prevention, curative care and
palliative care – coordinated with secondary and
tertiary care to assure easy and rapid referral
whenever necessary. PHC, like palliative care,
benefits from the participation of civil society
and the community in policy formulation
and accountability mechanisms to ensure
that the health system is socially acceptable,
universally accessible and affordable, and
scientifically sound (12). In addition, PHC and
palliative care have in common an emphasis
on providing continuity of care and solidarity
(accompaniment), respecting patients’ values,
responding to social suffering, and paying
attention not only to patients but also to their
families (6,13).

1
P HC is a whole-of-society approach to maximize the level and
distribution of health and well-being by acting simultaneously
on three components: primary care and essential public health
functions as the core of integrated health services; multisectoral
policy and action; and empowering people and communities. PHC is
the most equitable, effective, and cost-effective way to enhance the
health of populations.

7
Integrating palliative care into PHC
services
WHO recommends a stepwise approach to integrating palliative care into health services in general,
and into primary care in particular, in a cost-effective manner, to reach all those in need (1,14,16).2
This strategy includes:

• u
 pdating existing policies on palliative care and creating new ones where none exist;
• a ssuring safe accessibility of essential palliative medicines, including oral fast-acting morphine;
• initiating required training in palliative care for all clinicians who treat people with palliative
care needs, including training in basic palliative care for all primary care workers (15);
• implementing palliative care services that are integrated into all health care systems at all
levels, including palliative home care as part of primary care.
In settings where primary care is underdeveloped, primary care and palliative care can be developed
and expanded at the same time. The same infrastructure and human resources that provide primary
care both can and should provide basic palliative care; similarly, efforts to implement community-
based palliative care both can and should strengthen primary care.

WHO recommends an essential package of palliative care for primary health care (EP PHC) that is
designed to assist health care and primary care policy-makers, planners, implementers and managers
to integrate palliative care into community-oriented primary care (16). The EP PHC is the minimum
package that should be accessible in primary care clinics, and it is designed to address the palliative
care needs of both adults and children. The package comprises:

• safe, effective, inexpensive, off-patent and widely available medicines;


• simple and inexpensive equipment;
• basic intersectoral social supports; and
• h
 uman resources needed to apply each element of the EP PHC effectively and safely.
Together, these elements can prevent and relieve suffering of all types – physical, psychological, social
and spiritual – and thereby improve patient outcomes (16).

Morphine, in oral fast-acting and injectable preparations, is the most clinically important of the
essential palliative care medicines (17). It must be accessible in the proper form and dose by any
patient in the hospital or in the community with a clinical indication. All doctors who provide primary
care should be adequately trained and legally empowered to prescribe oral and injectable morphine
for inpatients and outpatients in any dose necessary to provide adequate relief, as determined by
the patients. There is evidence that specially trained nurses also can prescribe opioids safely and
effectively. Legally capacitated health workers who are inexperienced at prescribing morphine can
be trained adequately with a basic course in palliative care (16). Reasonable precautions should be
taken to prevent diversion and non-medical use of morphine and other controlled medicines. Model
guidelines for this purpose are available (18).

2
 HO differentiates PHC, a whole-of-society approach to health, from primary care, the first level of contact for health services that are
W
continuous, comprehensive and coordinated.

8
A basic model for integrating palliative care into health care systems, and the palliative care
interventions that should be available at each level, is shown in Table 1.

Table 1. Palliative care interventions, delivery platforms and providers

Delivery platform

Intervention Mobile
Facility-based First-referral Second- and third-
outreach or
primary care level referral level
home care

Ongoing care •C
 HWs, •N
 urses and • S mall palliative
for patients supervised by a ideally an care team
with well- nurse or social interdisciplinary led by one or
controlled worker at the team consisting more doctors
symptoms primary care also of a with basic or
related to facility, provide doctor or social intermediate
serious or life- surveillance worker with training in
limiting health and emotional basic training palliative care
problems support as in palliative
often as daily care provide • Inpatient
outpatient care palliative care
•V
 isits as and home visits
needed by a as needed •O
 utpatient
palliative care palliative care
trained primary • Inpatient clinic
care nurse, hospice care in
doctor or social some cases
worker

Initial control • S mall palliative • P alliative care


of moderate care team team led by full- or
or severe led by one or part-time doctors
symptoms more doctors with intermediate
related to with basic or training in palliative
serious, intermediate care
complex or training in
life-limiting palliative care •A
 palliative care
health specialist physician
problems or • Inpatient should lead the
control of palliative care team at major
refractory cancer centres and
suffering •O
 utpatient general hospitals
palliative care
clinic • Inpatient palliative
care ward
•C
 oordination
•O
 utpatient palliative
with and counter
care clinic
referral to
primary care
•C
 oordination with
and counter referral
to primary care

CHW: community health worker.


Source: Adapted from Krakauer et al. 2018 (6).

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People who can be involved in palliative care at the PHC level include
doctors, assistant doctors, clinical officers and nurse practitioners; nurses;
social workers, psychologists and trained lay counsellors; pharmacists;
community health workers (CHWs); chaplains and faith leaders; and
volunteers and family caregivers.

When integrating palliative care into PHC there is a risk of overwhelming


already overburdened primary care clinicians with yet another responsibility
and set of tasks. To avoid this, adequate funding is required to employ an
adequate number of primary care staff, and thereby to strengthen primary
care. However, integration of palliative care, including home care, into
PHC appears to not only improve access to palliative care and patient well-
being, but also reduce costs for health-care systems and provide financial
risk protection for patients’ families, by reducing dependency on hospital
inpatient and outpatient services (4,19-21). Thus, any additional investment
in human resources may result in cost savings (4).

Many countries already have CHWs who live in the same community as
patients and can visit them at home, daily if necessary. Existing, supervised
CHWs can be trained in as little as a few hours to provide emotional
support; to observe for uncontrolled symptoms, unmet social needs and
improper use of medicines; and to report their observations to supervisors
at primary care facilities (22). Where necessary, a nurse can then speak with
and provide instructions to the patient or family caregiver by mobile phone.
The nurse also may make a home visit and/or speak with a supervising
primary care physician or a physician at the referral level for advice.

Conclusion
Palliative care is essential care for people in the community with serious or
life-threatening illnesses. For ethical, public health and financial reasons,
palliative care must be considered an essential integrated service within
PHC.

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