Promoting Excellence : HIV Care: An Agenda for Change : Introduction

History of the Epidemic

Portion of AIDS QuiltIn its early history, the AIDS epidemic was a terrifying, mysterious plague that was rapidly fatal. Clinicians, nurses and others who dedicated themselves to the care of patients during these early years became palliative care specialists of necessity. While much hard work was done in supportive care, and the prevention, early detection and aggressive treatment of opportunistic complications staved off death temporarily, HIV/AIDS care largely meant offering symptom relief, comfort and emotional support as the disease inexorably progressed. AIDS activists and care providers did as much in the 1980s as any other group to advance the cause of greater access to expert palliative care, and to elevate end-of-life care onto the national policy agenda.

The mid-1990s saw the beginning of an unprecedented transformation in the treatment of HIV/AIDS - and with it, the attitudes of patients, affected communities and health professionals changed toward palliative care. The advent of HAART led to a steep drop in annual U.S. AIDS deaths, from a peak of 50,000 deaths in 1995 to fewer than 15,000 deaths just three years later - despite a virtually constant rate of new HIV infections. Nevertheless, HIV care providers, people at risk, social service organizations and the general public have come to think of HIV/AIDS as a manageable, chronic disease.

These trends also created a gap between the HIV clinicians and palliative care specialists who previously shared a mutual understanding and expertise. The dramatic transformation of the AIDS epidemic cannot be overstated, and represents a triumph of activism and research. But ironically, among the casualties of this success have been the awareness of, zeal for and expertise in palliative care that characterized AIDS care during the 1980s and early 1990s. Then, hospices in large American cities were filled with young men dying from AIDS. Now the two fields have diverged.

Living and Dying in the Age of HAART

HIV clinicians who are coming of age in the HAART era may have little appetite for and no didactic training in palliative care, as well as little hands-on experience. Many feel that introducing end-of-life issues is "disloyal" to the compelling drive to continue antiretroviral therapy, even in patients with far-advanced disease receiving "salvage" therapy. Amidst a strong current of therapeutic optimism, spurred by new scientific developments, attempts to focus on end-of-life issues may appear defeatist, negative, even traitorous to the quest for life. The growing cadre of palliative care specialists produced in the 1990s likewise have little experience with AIDS, and feel ill-qualified to manage the increasingly complex treatment regimens that characterize current HIV care, even near the end of life. Narrowing this gap in the age of HAART has been difficult.

Informal caregivers, many of whom also belong to affected communities, and are exhausted by the emotional demands of the unrelenting deterioration and death they faced during the epidemic's first 15 years, have been understandably relieved to "medicalize" the care of HIV. There is a sense of having "been there, done that" with respect to end-of-life care - and certainly no desire to go back. At the same time, communities at risk have been only too glad to accept the vision of HIV as a chronic disease, to stop going to funerals, to focus on the problems of living with HIV rather than of dying from AIDS. To many, people who are dying of AIDS today may serve as unpleasant and unwelcome reminders that the disease is still lethal.

People continue to die from HIV infection and its related complications. The HIV/AIDS epidemic in the U.S. can no longer be considered stable; rates of infection are climbing. There are approximately 40,000 new cases and 15,000 deaths per year in the U.S., and there are worrisome trends toward increasing incidence among high-risk groups. Because people survive much longer after infection, the prevalence of HIV/AIDS has gone up dramatically. For some people with HIV, the advances in HAART came too late. Some individuals had acquired drug resistance as a result of early, suboptimal treatment and are unable to derive maximum benefit from HAART. Others are unable to tolerate antiretroviral medications. Many more are unable to reap the benefits of these therapies, due to psychosocial factors such as poverty, limited access to care (either due to lack of insurance coverage or by living in a rural or underserved area), unmet basic needs such as adequate food or housing, and concomitant psychiatric illness and/or substance abuse. Still others may see their HIV "successfully" treated, only to succumb to end-stage liver or kidney disease, malignancy or treatment-related complications.

What is different now about palliative and end-of-life care in HIV/AIDS is not how people get sick and die, but who is getting sick and dying and when they are doing so. Despite the 20-plus year duration of the epidemic, people with HIV/AIDS are often marginalized and stigmatized, either because of the disease itself, or because of broad social attitudes toward the groups from which they are disproportionately drawn - women, people of color, gay and bisexual men, substance users, the mentally ill, the poor and the incarcerated. For these groups, barriers to care are still formidable, and the most marginalized and disenfranchised groups fare the worst. Unfortunately, the benefits of therapy and other advances in HIV/AIDS care have not been equally distributed among the poor and people of color. AIDS case fatality rates have fallen far less, for example, for African Americans than for whites. And although the Ryan White CARE Act provides a care delivery structure for the indigent and those individuals with poor insurance coverage, not all patients have access to a full continuum of coordinated care.

Populations infected with HIV/AIDS today represent all life cycles, including children and adolescents of infected parents and elderly individuals who often remain ignorant of their own infection. Entire families infected with and affected by HIV/AIDS are not uncommon. Adolescent survivors of perinatal HIV deserve specific mention. Many people, lay and professional, assume they have already died and therefore do not need care. In fact, many are living into adulthood with myriad challenges. Most are orphaned. Some experience severe disruption in their home and family lives, necessitating foster care placement. They are uniquely at risk for having no clear health care proxy to assist with important decisions regarding care, especially at the end of life. Many experience isolation because of absences from school or stigma from their appearance, i.e., short stature or delayed puberty. As family members die of AIDS the adolescent experiences loss at the same time his or her own disease is progressing because of multi-drug resistant failure.

A Better Future is Possible

The time has come to call for a shift in the current clinical paradigm of HIV care. It is clear that there are still important roles for both HIV specialty care and palliative care expertise in the optimal management of HIV/AIDS. But the unique set of barriers to providing concurrent specialty and palliative care are also clear. While people are living longer with the new complicated therapies, the disease is more compelling and difficult to manage than it once was. Complicated therapies demand better symptom management. And most HIV specialty clinicians are not trained in the discipline of palliative medicine, including symptom management. Longer survivals bring comorbidities that further complicate care and make patient prognoses difficult to predict. The persistent stigma and social attitudes toward HIV disease and the death it represents often preclude good communication about goals of care. HIV/AIDS remains a progressive disease with restorative - not curative - outcomes, where goals of care must be adjusted regularly.

The shift in health care provider awareness and training away from palliative and end-of-life care needs modification. There are no clearly defined comprehensive care guidelines that integrate palliative and end-of-life care with HAART. Palliative care is not a luxury; it is an integral component of providing the highest quality of care possible. Attention to symptom control, comfort and quality of life issues are in fact characteristics of the best standard of care possible, and attention to the palliative care issues raised in this report will ensure that patients receive the full benefit of antiretroviral therapy.

Recognizing the goals of comfort, quality of life and anticipatory guidance, palliative care is no longer restricted to hospice care. Newer delivery models of palliative care encompass disease-modifying treatments as well as supportive services that often span long periods of time. Innovative programs integrating palliative care into HIV care are demonstrating systems of care in which an interdisciplinary team can manage complex biomedical issues, cultural considerations and patient preferences to maximize quality of life in cost-effective ways.

A hopeful and improved future for HIV care is envisioned in the Recommendations to the Field accompanying this report. The Workgroup on Palliative and End-of-Life Care in HIV/AIDS identified gaps in health service delivery systems and in the base of clinician knowledge and skills, and created this set of recommendations for clinicians, educators, researchers, policy-makers, funders and health care payers, to advance further development and integration of palliative care throughout the trajectory of HIV disease. These recommendations address the specific challenges of the new clinical aspects of HIV disease, the intersection of these with the psychosocial aspects of HIV disease, and the need for new integrated delivery models based on interdisciplinary teams. They are applicable to HIV-infected people and HIV-affected families of all ages, including children and orphans.

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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.

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