The Promoting Excellence in End-of-Life Care Workgroup on Palliative and End-of-Life
Care in HIV/AIDS recommends the integration of palliative care into HIV/AIDS
disease management throughout the course of illness and not just at the brink
of death. The Workgroup holds that truly excellent care for HIV/AIDS must always
include not only the latest antiretroviral and disease-specific therapies,
but also equally diligent attention to symptom relief, quality of life, and
psychosocial and spiritual needs. This emphasis must be reflected in every
decision, statement and policy issued by every social body that stands to influence
the ways care is provided for HIV/AIDS. To that end, the Workgroup endorsed
the following recommendations to provide clinicians, educators, researchers,
policy-makers, funders and health care payers an agenda for change that will
improve quality of life for patients, families and caregivers and increase
access to optimal palliative care to complement current disease treatment and
Recommendations for Clinicians
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on the
Department of Health and Human Service's (DHHS) Public Health Service to include
palliative care in the DHHS treatment guidelines for HIV/AIDS care. Likewise,
other influential bodies that issue HIV/AIDS treatment directives, including
the International AIDS Society (IAS), the American Academy of HIV Medicine
(AAHIVM) and the HIV Medicine Association (HIVMA), must include palliative
care in their comprehensive clinical guidelines.
The Workgroup calls on the Panel on Clinical Practices for Treatment of
HIV Infection and the Working Group on Antiretroviral Therapy and
Medical Management of HIV-infected Children to include guidelines for
palliative and end-of-life care in published treatment guidelines for adults,
adolescents and children
with HIV infection.
The Workgroup calls on clinicians, HIV provider communities and accrediting
bodies of clinical professionals to establish a standard of care for HIV/AIDS
that integrates a palliative approach throughout the spectrum of care and across
all settings. This standard of care must include competencies in:
- The interdisciplinary
model of care and collaborative decision making;
- Effective communication;
- Pain and symptom management throughout the continuum
of illness, including management for improved adherence to improve Heath-related
Quality of Life
- Patient-focused and family-centered care;
- Establishment of goals of care
throughout the continuum of the illness, including advance care planning,
anticipatory support and guidance related to
- Cultural and spiritual sensitivity and understanding of their
relationship to wellness and illness;
- Assessment and management of end-of-life
care and the dying process, including but not limited to pain and symptom
management, withdrawal of life
interventions and issues of life closure; and
- Bereavement care and referral.
The Workgroup calls on clinicians, HIV provider communities and health
care systems to include palliative care and end-of-life issues in continuous quality
Recommendations for Clinical Educators
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on educators
at all levels of clinical training to advance a standard of care for patients
of all ages with HIV disease (including children and adolescents) and their
families that integrates palliative services and interventions, to improve
comfort and quality of life throughout the continuum of care. The Workgroup
asks educators to:
- Develop clinical guidelines and best practices regarding palliative care
and end-of-life care in HIV disease, creating uniform standards for core
palliative HIV care within existing curricula.
- Mandate palliative care as
a part of HIV education; curricula must include
concepts and reflect the clinical standard of care at every level of training.
- Include core content in palliative care in the proposed Certificate of
Added Qualification (CAQ) for HIV medicine.
- Create clinical educational programs
and resources regarding care transitions for
individuals with advanced HIV disease.
- Extend credentialing programs to all
disciplines working with HIV populations,
including social workers, nutritionists, dentists, and others, modeled after
provider credentialing programs.
- Include the management of complications
and symptoms prevalent in or specific to HIV disease in all palliative
care education programs, fellowship
The Workgroup requests that the Health Resources and Services Administration
(HRSA) mandate that its safety net providers (e.g., federally funded community
and migrant health centers, Health Care for the Homeless Clinics and recipients
of Ryan White CARE Act funding) receive training in palliative care.
The Workgroup calls on professional organizations (AIDS Action, National Organizations
Responding to AIDS [NORA], the National Hospice and Palliative Care Organization
[NHPCO], the American Academy of Hospice and Palliative Medicine [AAHPM], National
Hospice and Palliative Care Nurses Association [NHPCA], et al.) to:
Develop and disseminate interdisciplinary training modules that include management
of symptoms (comorbidities and substance abuse), and psychosocial, spiritual
and cultural aspects encountered at critical turning points in overall HIV
- Educate the public, especially communities at risk, and
those infected and affected by HIV, regarding the purposes and availability
of palliative care,
and empower them to demand attention to caregiver support, quality of life
and excellent symptom management.
Recommendations for Researchers
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on researchers
and research agencies to:
Define the set of palliative care and end-of-life issues that are specific
to, more prevalent in, or more severe in the setting of HIV/AIDS than with
other life-threatening conditions.
- Conduct clinical and health service delivery
studies into palliative domains of care and quality of life for HIV patients
of all ages, including children
and adolescents and their families.
- Address salvage therapy when existing
antiretroviral therapy regimens have failed, incorporating study designs
that include groups receiving "no antiretroviral
therapy with intensive palliative and supportive care" and groups treated
"new antiretroviral therapy with intensive palliative and supportive care."
- Advance, within HIV treatment trials, a standard of care that includes
palliative care and encompasses assessment of palliative outcomes.
within the Adult and Pediatric AIDS Clinical Trials Group (ACTG) investigations
a category of "desire for intensive palliative care" as
endpoint or reason for withdrawal from clinical trials.
- Investigate palliative
aspects of family caregiver experience, exploring both burdens and benefits
- Conduct demonstration projects involving collaborations of
existing services — including social services, corrections, homeless shelters,
services and care delivery, and hospice services — in delivering palliative
care to people with HIV disease and their families, including those with
concomitant problems of substance abuse.
- Investigate the cost impact of addressing
patient and family needs related to comfort and quality of life earlier
in the trajectory of the illness,
including models of home-based care and appropriate symptom management.
Recommendations for Policy-Makers
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on members
of the U.S. Congress to:
Expand eligibility requirements and funding for federal Ryan White CARE Act
programs, to accommodate the rising prevalence of HIV in certain populations
(e.g., adolescents, heterosexuals, people of color).
- Continue and expand
the AIDS Drug Assistance Program (ADAP) at federal and state levels, and
include palliative care medications on ADAP formularies.
- Expand current
statutes to enable coverage for long term care with the goals not only
of minimizing acute care hospitalizations, but also of enhancing
autonomy, independence and quality of life.
The Workgroup calls on policy-makers at the Centers for Medicare and Medicaid
Services (CMS) to:
- Revise hospice regulations to allow for continued payment for HIV medications
through ADAP for eligible patients who elect to receive the Medicare hospice
benefit but who wish still to receive antiretroviral therapy.
- Develop and
conduct population-based demonstration projects blending palliative care
with best practices of HIV care, including substance users, homeless
and incarcerated populations in these projects.
The Workgroup calls on HRSA administrators of the Ryan White CARE Act
- Integrate palliative care into the continuum of care for all ages, including
children and adolescents, funded by the Ryan White CARE Act.
- Coordinate policies,
regulations and reimbursement between Ryan White programs (especially the
AIDS Drug Assistance Program), Medicare and Medicaid,
the aging of the HIV-infected population.
- Assure that individual states adequately
match Ryan White CARE Act funds, to make certain that state programs maximize
- Change Ryan White guidance to planning councils to mandate
care and treatment as top funding priorities, with emphasis on attention
advance care planning.
The Workgroup calls on policy-makers within governmental agencies, in
AIDS support organizations (ASOs) and other agencies to:
- Make palliative
care coordination and interdisciplinary outpatient services available to
people with advanced HIV disease of all ages and their families.
- Develop consistent
policies for bureaus of prisons and state departments of corrections regarding
palliative care and end-of-life care for people with
- Include palliative care as an integral part of HIV care within all pertinent
- Build capacity for home-based HIV palliative care in
- Create flexible and responsive mechanisms for guardianship and
assistance with health care decision making for all dependent people — children,
adolescents and dependent adults — as well as provide guidance and education
courts, lawyers, judges and state attorneys general that protect all dependent
The Workgroup asks the American Bar Association and American Health Lawyers
Association to convene a group to:
- Evaluate legal protections for privacy and confidentiality in the context
- Remove legal barriers to optimal HIV care for minors and adults
who have lost
The Workgroup asks policy-makers at all levels and in all arenas to enact
the following in coordinating efforts to improve the quality of care and quality
of life for people with HIV disease and their families:
- Develop policies that require palliative care availability whenever disease-specific
therapies are offered concurrently (including antiretroviral medications
or medications to prevent or treat opportunistic infections).
- Develop clinical
standards for agencies, hospices and Ryan White programs
that integrate palliative care into the continuum of care of people of all
ages with HIV disease.
Recommendations for Health Care Funders
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on funders
of clinical and health service delivery to:
- Provide expanded funding for
successful demonstration projects in which disease-specific and palliative
interventions are provided simultaneously.
- Fund studies of the efficacy and
cost effectiveness of palliative care with sufficient power to answer questions
about access, quality and impact on cost
of care at a national level.
- Convene a funders' conference, involving the
Health Resources Service Administration (HRSA), the Centers for Medicare
and Medicaid Services (CMS),
makers and third-party health care payers, in order to delineate areas of
funding responsibility in advancing clinical standards, training and research
palliative care for HIV patients of all ages and their families.
an expert consensus conference to design and implement studies of concurrent
disease-specific and palliative care programs.
- Fund educational opportunities
for HIV clinicians in palliative care and for palliative care clinicians
to participate in HIV mini-fellowships, preceptorships
- Support research into expanding community hospice programs
as an effective part of the continuum of care.
Recommendations for Health Care Payers
The Workgroup on Palliative and End-of-Life care in HIV/AIDS calls on health
care payers to:
- Establish reimbursement mechanisms for inter-agency networking
and non-traditional services, including housing and social services, that
improve quality of life
and can provide alternatives to costly institution-based care.
- Update managed
care organizations' reimbursement schedules to reflect advances in disease
stratification, to enable coverage of comprehensive assessment
symptoms, functional status and patient-family needs.
- Update payment schedules
and standards for HIV disease management to
include palliative care.
- Develop and disseminate billing mechanisms for palliative
concurrently with disease-specific HIV care.
- Create mechanisms to reimburse palliative
care consultations by individual palliative care consultants and interdisciplinary
- Create reimbursement mechanisms for home-based care and other palliative
care needs earlier in the trajectory of the illness.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.