Promoting Excellence : HIV Care: An Agenda for Change : Recommendations to the Field: A Roadmap for Change

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 management.

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 (HrQol).
• 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 adaptation to illness;
• 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 prolonging 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 improvement programs.

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 core 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 HIV provider credentialing programs.
• Include the management of complications and symptoms prevalent in or specific to HIV disease in all palliative care education programs, fellowship trainings and certifications.

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 disease management.
• 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 with "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.
• Incorporate within the Adult and Pediatric AIDS Clinical Trials Group (ACTG) investigations a category of "desire for intensive palliative care" as a study endpoint or reason for withdrawal from clinical trials.
• Investigate palliative aspects of family caregiver experience, exploring both burdens and benefits of caregiving.
• Conduct demonstration projects involving collaborations of existing services — including social services, corrections, homeless shelters, housing, health 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 patient 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 individuals and incarcerated populations in these projects.

The Workgroup calls on HRSA administrators of the Ryan White CARE Act program to:

• 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, to address 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 federal dollars.
• Change Ryan White guidance to planning councils to mandate care and treatment as top funding priorities, with emphasis on attention to palliative needs and 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 HIV.
• Include palliative care as an integral part of HIV care within all pertinent program guidelines.
• Build capacity for home-based HIV palliative care in rural areas.
• 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 for guardians, courts, lawyers, judges and state attorneys general that protect all dependent people.

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 of HIV/AIDS.
• Remove legal barriers to optimal HIV care for minors and adults who have lost decision-making capacity.

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), private grant makers and third-party health care payers, in order to delineate areas of funding responsibility in advancing clinical standards, training and research into palliative care for HIV patients of all ages and their families.
• Convene 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 and observerships.
• 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 of 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 care delivered concurrently with disease-specific HIV care.
• Create mechanisms to reimburse palliative care consultations by individual palliative care consultants and interdisciplinary teams.
• 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 is 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.