Palliative Care: A Continuum of Patient-Centered Care
Introduction
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In a USAID-funded hospice in South Africa, a nurse is demonstrating to
a colleague how to massage the feet of a patient in the advanced
stages of AIDS. The massage helps ease the pain the man is experiencing
and is part of a comprehensive package of palliative care services
he receives. His two children sit beside him.
Source: John Palen/USAID |
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An estimated 33 million people worldwide are living with HIV/AIDS
a disease whose myriad symptoms can result in undue suffering.
This suffering can consist of physical pain and discomfort, such as
diarrhea, cough, and shortness of breath, nausea, weakness, fatigue,
and fever. It also can consist of psychological pain, such as anxiety
and depression; spiritual pain, such as fear of death and doubts
about the meaning of one's life; and social pain, such as the burden
of stigmatization and alienation.
In its efforts to minimize the suffering of people living with HIV/AIDS
in developing countries and to maximize their quality of life, the U.S.
Agency for International Development (USAID) strongly supports
palliative care as an overall philosophy of care, complementary to
preventive and curative measures, and as a set of specific practices
that apply this philosophy.
Palliative care is a holistic, patient-centered, and culturally sensitive
approach to care. It involves not only the patients themselves, but
also their families and communities. In practice, palliative care
integrates two essential components of care. One is the control of
symptoms and pain. The other is supportive care: namely, interventions
to meet the psychological, social, and spiritual needs of the
patient and the family. The palliative care framework calls for varied
combinations of these two components to be provided over the
full course of the illness, from diagnosis to death, and through the
bereavement of family members.
USAID is working to facilitate and expand the provision of palliative
care in developing countries as a key partner in the U.S. President’s
Emergency Plan for AIDS Relief. Through the strategic development
of palliative care in countries hard hit by HIV/AIDS, USAID is able to
strengthen societies’ capacity to meet the needs of those infected
and affected by HIV/AIDS. In doing so, USAID helps to build systems
and infrastructure that can be used to meet the challenges of the
AIDS pandemic and to advance broader development goals in the
areas of health, democracy and governance, education, and economic
growth and trade.
USAID Supporting
the Foundations of Palliative Care
USAID’s work to advance palliative care focuses on three areas
whose fundamental importance is recognized by the World Health
Organization (WHO): policy development, caregiver training, and
access to palliative care services.
| Palliative Care: 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. |
| – World Health Organization |
Policy Development
Governments play a vital role in the provision of palliative care.
They can provide a solid foundation for this health care approach
by supporting policies that establish national standards of quality,
increase the availability of pain- and symptom-alleviating services
and medications, and make them affordable to those in need. One
of the best ways for governments to put their force behind the
development of palliative care is by making it a part national and
regional health plans. Such plans should not be limited to the
medical and psychosocial needs of adults; they should also respond
to the special needs of children.
Understanding the significance of governmental backing, USAID
Missions help to inform host-country governments of the benefits
of palliative care and provide guidance to improve its quality,
availability, and affordability. To achieve these goals, the Agency
collaborates with strategic partners. For example, USAID has a
longstanding partnership with the African Palliative Care Association
(APCA), whose multifold support of palliative care includes efforts
to build national advocacy.
With support from USAID, APCA recently held a set of advocacy
workshops in Namibia for government, nongovernmental organization
policymakers, and care providers representing 10 southern
African countries. The three-day workshops focused on access to
palliative medications and services, including pain management.
Although pain medications, such as opioids, are commonly and
safely used to reduce pain, few countries have sufficient laws or
regulations in place that allow for their regular use in the health
settings. This is primarily due to the fact that not all policymakers in
developing countries are fully aware of their advantages in helping
to reduce suffering, and some of them may believe the myth that
they promote addiction.
Thus, the workshops were designed to provide participants with accurate
information and to strengthen their advocacy skills so that they
could communicate more effectively with policymakers. By improving
participants’ advocacy capacity on this issue, the workshops aimed,
in turn, to influence the shaping of national policies and laws that
support access to and use of palliative medications. A survey given
to participants after the workshop revealed that 86 percent thought
the experience had value for their work. To learn more about USAID’s
partnership with APCA, please see the text box on the next page.
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In the early stages of HIV disease,
palliative care’s main focus is clinical.
As the disease progresses, palliative
care focuses increasingly on nonclinical
services that support the
quality of life for HIV-positive people
and their families and assist them in
their planning and preparation for
the future. |
Caregiver Training
Currently, too few health care workers (HCWs) are versed in
palliative care to meet the demand for it. This is particularly true in
sub-Saharan Africa. Home to 67 percent of all men, women, and
children living with HIV/AIDS, the region faces an overall shortage
of HCWs. As is the case in many other parts of the world, palliative
care is a relatively new field in sub-Saharan Africa. As a result, it is
rarely integrated into the training curricula for HCWs, including
those for doctors and nurses working at the community level.
USAID recognizes the need to increase the number of opportunities
for medical professionals and lay caregivers in developing countries
to learn about the science and practice of palliative medicine. In
working to meet this need, the Agency provides support to such
organizations as the Hospice Palliative Care Association of South
Africa (HPCA).
As an association with 76 member hospices throughout South
Africa, HPCA works toward its mission to provide and enhance
the provision of sustainable, accessible, quality palliative care by
using a multidisciplinary approach in its training. In artnership
with higher education institutions, professional associations, and
South Africa’s national and provincial departments of health, social
development, and education, HPCA offers a wide range of accredited
training programs to volunteers, community health workers,
nurses, and doctors. Such training programs improve caregivers’
capacity to address the clinical needs of HIV/AIDS and sensitize
them to the benefits of the palliative approach to delivering care.
They also improve caregivers’ skills in negotiating care decisions,
delivering difficult news, and discussing psychosocial and spiritual
issues with patients and their families.
Access to Palliative Care Services
Although palliative care for people living with HIV/AIDS can be
provided by a single organization, many developing countries lack
organizations that offer the full range of palliative care services. As
a result, it often takes the talents of caregivers across a number of facilities, clinics, and community- and faith-based organizations to
meet the need for palliative care. For this reason, USAID encourages
the development of cross-organizational networks through
which HCWs can communicate regularly about patients under
their care. Such networking can help HCWs identify and suggest
care options for their patients to consider, provide them with appropriate
referrals, and plan necessary follow-up.
When USAID supports organizations whose scope of work is not
inclusive of all the dimensions of palliative care, the Agency ensures
that the organizations observe the spirit of holistic care. They can
do this first by recognizing the need for services beyond those that
they themselves provide and then by helping patients and their
families link to those services. One common division in palliative
care services is between clinical and spiritual care.
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Improving Care for People Living With and
Affected by HIV/AIDS
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USAID’s partnership with the African Palliative Care Association (APCA)
exemplifies the Agency’s commitment to providing care for the body, mind,
and heart to people in developing countries who are living with HIV/AIDS
and their families. In 2004, the U.S. President’s Emergency Plan for AIDS
Relief (PEPFAR) provided funding for APCA to establish a headquarters in
Kampala, Uganda. Since then, USAID – a key implementing agency of
PEPFAR – has supported APCA’s diligent work to promote and support
palliative care that is culturally appropriate, gender sensitive, and evidencebased.
In striving to make palliative care available to as many as possible
and to ensure this care is the highest quality, APCA pursues five strategic
activities:
- Encouraging governments across Africa to support affordable and
appropriate palliative care, which is to be incorporated into the whole
spectrum of health care services
- Promoting the availability of palliative care medications for all in need
- Encouraging the establishment of national palliative care associations in all African countries
- Promoting palliative care education and training programs that are suitable for African countries
- Developing and promoting quality standards in palliative care training and service provision for different levels of
health care professionals and care providers
“Palliative care’s benefits are great, not
just at the end of life, but even early on.
If you manage pain and symptoms, people
living with HIV can remain active and
productive. That helps individuals, and it
helps families.” |
Dr. Julia Downing
Deputy Executive Director, APCA
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APCA has undertaken activities in 18 African countries, working with governments, caregivers, and palliative care
supporters to achieve its goals and ensur e their sustainability. Below are examples of some of the organization’s USAIDsupported
activities.
In Namibia, where APCA’s efforts are supported by USAID, palliative care, though needed, is still at its nascence. APCA
is working closely with the Ministry of Health and Social Services (MoHSS) and with other stakeholders. For example,
APCA and Catholic AIDS Action are undertaking a pilot program that aims to integrate palliative care into a home-based
care program with sites in Anamulenge and Rehoboth. The purpose
behind these ongoing collaborations is to further integrate
MoHSS programs with those of other stakeholders. In addition,
APCA has assisted in the training of 28 health care professionals
and more than 150 care-giving community volunteers.
In Mozambique, USAID and the U.S. Centers for Disease Control
and Prevention (CDC) supported APCA in providing technical
assistance to ANEMO, a national association of nurses and midwives
that has a membership of more than 1,500 members. This
assistance helped to strengthen ANEMO’s organizational flow and
capacity. APCA also assisted ANEMO’s board development and
its organizational restructuring and strengthening to build its
capacity to effectively coordinate activities.
In Tanzania, APCA is partnering with the Foundation for Hospices in Sub-Saharan Africa and Evangelical Lutheran Church
of Tanzania on Continuum of Care for People Living with HIV/AIDS in Tanzania (CHAT). CHAT is a project of the New
Partners Initiative, which is managed by USAID and funded by PEPFAR. CHAT endeavors to scale up existing programs
for home-based care and for orphans and vulnerable children by introducing palliative care as a new program component.
In addition, CHAT aims to reach populations in remote and underserved geographical areas and to assist in creating a
continuum of care by forming linkages with existing treatment programs. |
Clinical Care
Based on the WHO definition, palliative care is an approach that
improves the quality of life for patients and their families facing
problems associated with life-threatening illness, through the prevention
and relief of suffering by early identification and impeccable
assessment and treatment of pain and other problems, psychosocial
and spiritual. This methodology is complementary to other clinical
services that are curative and preventive.
One USAID partner that exemplifies the Agency’s commitment to
providing a wide array of clinical services is Hospice Uganda, which
has been looking after people with HIV/AIDS and/or cancer since
1993. As a hospice, the organization focuses on delivering end-oflife
care in the patient’s home, although it will sometimes begin
service to patients in hospitals until they feel well enough to return
home. In its 15 years of experience, Hospice Uganda has found
that patients and their families are able to make the remaining time
they have together meaningful when pain is relieved and they are
at peace. In order to encourage a greater sense of peace, Hospice
Uganda respects all faiths and supports spiritual counseling to patients
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Specializing in palliative care, the USAID-supported Soweto Hospice
was one of the first clinics in South Africa to provide holistic specialty
care to children living with HIV. Recently, the Hospice hosted Kami, the
first HIV-positive Muppet, who provided young patients with comfort
and compassion.
Source: USAID/South Africa |
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Spiritual Care
Compassion is the basis for this type of care; that is, having the ability
to connect with patients and their families, experience their suffering,
anger, and fear, and provide them with hope and comfort. Through
spiritual care that is sensitive to the culture, religion(s), and rituals of
the individual, caregivers can help patients to explore such difficult
issues as premature death, the meaning and purpose of life, regrets,
unfinished business, and survivorship.
Spiritual leaders are in a unique position to help individuals, families,
and even communities cope with the challenges of HIV/AIDS.
Typically, they are active members of the affected community, and
because they know the residents of the community and understand
their traditions and values, they are trusted and highly regarded.
As such, they can help people come to terms with illness and seek
necessary care. In addition, they can provide community members
with information that dispels myths and misconceptions that can
lead to the stigmatization of HIV-positive people.
For this reason, Buddhism for Development (BFD), a USAID-supported
faith-based organization in Cambodia, operates The Peace
Development School. This six-week education program in Battambang
Province offers instruction to monks on HIV/AIDS and
home-based care. Once trained, many of the monks return to their
home villages and set up HIV/AIDS programs that carry out HIV
prevention services and home-based care. While the participating
monks practice Buddhism, a religion that is also observed by an
estimated 95 percent of Cambodians, they respect all faiths and can
provide referrals to spiritual leaders of other religions on request.
BFD also runs its own home-based palliative care and psychosocial
support projects in three communities. The projects’ home-based
care teams, which include the participation of monks, provide both
clinical and spiritual care. The teams train family members on basic
health care and nutrition and are able to refer HIV-positive individuals
to other clinical services, such as tuberculosis screening, and to
community services that provide welfare support or advice on
income-generating activities. Such services may help patients and
families achieve a greater sense of peace by reducing financial strain.
Conclusion
As a complement to preventive and curative measures, palliative
care provides a demonstrable advance in USAID’s efforts to
alleviate the physical, psychological, and spiritual pain of people in
the developing world who are living with HIV/AIDS.
The U.S. Agency for International Development works in partnership with the U.S. President's Emergency Plan for AIDS Relief.
June 2009
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