COMMENTARY on African American Perspectives on Pain, Palliative Care and End-of-Life Care [Print Version]
Commentary by September Williams, MD
Laguna Honda Hospital, San Francisco, CA
Palliative care and its final stage, hospice, represent one of the arenas of health care disparities. Health care disparities result from a complex, sociologically nuanced, race-based triage system. In this system, peoples of color, particularly African Americans and Hispanics, disproportionately have end-of-life care initiated in public long-term care hospitals. Taken in aggregate, staffing in these settings is not at a full complement for the acuity of care reflected in end-of-life diagnosis and palliative care. Inadequate staffing diminishes the value of palliative care in the eyes of the communities using public medicine, in part, because dying in public nursing homes and long-term care hospitals is seen, prima facie, as a failure by most African Americans.
Drs. Crawley and Payne have underscored the disproportionately high-death rates associated with the triaging of African Americans due to increased life-threatening illnesses. These authors elucidate some nuances associated with the distrust of health care systems, including palliative care in communities of color. Successful community-based programs in end-of-life care, established during the late 1990s via philanthropic, governmental, and faith-based communities, are enumerated. Many of these successful programs evolved during the unprecedented Centers for Disease Control and Prevention and philanthropic organizations’ commitment to community engagement via direct community-based allocation of funding. Also highlighted by Crawley and Payne is the grim reality that many of these programs are at risk or have ended due to insufficient funding in the wake of shifts in fiscal policy.
The above represents the context in which the preferences around end-of-life care for African Americans and Hispanic peoples have been shaped in the first half of this decade. Exciting and significant in these reports is an emerging consensus that with increased education, the majority of African Americans will use end-of-life services and advance directives to clarify their preferences around dying. The movement to improve the quality of end-of-life care can take credit for this shift in perspective.
The hospice units of public hospitals are charged with providing a safety net for the frail elderly and other dying persons. Much palliative care for African Americans is administered in long-term settings that are resource stressed and not necessarily in the hospice units of those facilities. This care is implemented by interdisciplinary teams whose patients’ diseases are at end stage. Often these patients are long-term residents. Consequently, these hospitals are their homes, and they are entitled to hospice care in their home environment.
As all humanitarian care, palliative care is dependent on presence and communication . The interdisciplinary team (IDT) structure of long-term care is ideally suited to meet these requirements of palliative care/hospice. The IDT typically includes social workers, nurses, doctors, behavioral scientists, pharmacists, and clergy and chaplains. When patients require more focused interdisciplinary care of this kind, very few facilities have the coordinated interdisciplinary team to provide such caring unless a hospice referral is made. As patients shift into the end-of-life phases, however, there is often no fiscal capacity to provide the increased human resources needed in navigating the final stage of life.
Pain management is the paradigmatic approach for team-based elimination of noxious symptoms causing suffering near life’s end and is often at the heart of compassionate care near life’s end. It is instructive to examine the intensity of resources required for appropriate pain management and to juxtapose this against the reality of care afforded in resource-stressed clinical settings, which are only able to supply minimal staffing. Palliative care is intensive care for dying people, which when properly applied does not necessarily cut the cost of end-of-life care; it improves the quality.
Quality pain management requires holistic evaluation and intervention including: 1) establishing a pain-rating system consistent with the patients capacity to express levels of pain; 2) physical exams providing clues to the physiologic causes and types of pain; 3) initiation of interventions in several modalities, including medications and non-pharmacological approaches such as psychological support, and spiritual care, and 4) evaluating the efficacy of the interventions in time-sensitive intervals. Each therapeutic intervention must be reassessed utilizing the tried and true palliative care approach of appraising: 1) the adequacy in eliminating the symptom; 2) adverse effects on activities of daily living; 3) aberrant usage; and 4) the patient’s underlying psycho-physiological potential for addiction.
Addiction potential is a significant area of concern for African Americans as noted by Crawley and Payne. Assessment of aberrant drug use behaviors in patients taking opioids for pain management becomes relevant at the end of life, however, in only small groups of patients. African Americans who are dying from complications of AIDS and who acquired HIV as a result of intravenous drug use are part of such a population.
Naive health care provider assumptions that dismiss unassessed addiction potential are likely to be suspect by individuals aware of families and communities that have been dismantled by substance abuse. It is not enough to say, "Pain medication will not cause addiction when used against real pain." Reducing the fear of addiction potential near life’s end, however, is an appropriate clinical goal of care.
Additionally, without an assessment of addiction potential, patients may be under-medicated, plagued by the effects of rapid development of tolerance, or medicated with inappropriate combinations of medications. For example, patients on methadone maintenance should have their historical methadone maintenance dose considered as a physiological baseline, not as pain medication. The addition of more methadone versus other opiates for increased pain is weighed against risks of extremely long half-lives and increased adverse effects associated with high-dose methadone use. Individuals with documented addiction potential may respond better to one form of breakthrough medication than another and require shorter dosing intervals. An improved understanding of addiction science and behavior is necessary to address the expressed concerns of African Americans around pain and symptom control near life’s end.
In the context of a system overwhelmed by end-stage diseases of disparities, providing fiscal support for adequate palliative care is fundamental to its expanded use. There is a Medicare and Medicaid hospice benefit that provides fiscal support for palliative care.
In communities victimized by health care disparities, the age of patients with end-stage illnesses is ever decreasing. This changes the long-term care environment substantially, which is traditionally funded based on skilled nursing for the geriatric peer group.
In part, the evolution of hospice derives from a volunteer movement. In communities tattered by health care disparities, volunteer capacity, as clinical professional capacity, is frequently outstripped by palliative care need. Palliative care requires intensive multidisciplinary care for dying people. While working to prevent more people of color, and the poor in general, from dying of end-stage diseases, the need for greater fiscal support of palliative care/hospice must be recognized. The best hope for providing quality end-of-life care for African Americans at life’s end is providing more equitable access to high-quality end-of-life care.