Innovations in End-of-Life Care
an international journal of leaders in end-of-life care
Underserved Populations, Resource Poor Settings, and HIV:
Innovative Palliative Care Projects
Joseph O'Neill, MD, MPH and Katherine Marconi, PhD, MS
[Citation: O'Neill J, Marconi K. Underserved populations, resource poor settings, and HIV: Innovative palliative care projects. Innovations in End-of-Life Care. 2002;4(3),www.edc.org/lastacts]
During the early 1600s the Italian painter, Artemisia Gentileschi, produced many paintings of suffering and death, drawing upon images from the Old Testament. Her paintings convey in rich colors and many shadings pain, beauty, suffering but also comfort and hope—often within the same scene.1
While the centuries separate Artemisia from the pain and death of today, her paintings visually depict messages that the writers of this issue of Innovations strive to convey about the complex process of living with and dying from HIV. As the authors illustrate, caring for individuals with HIV, whether here in the United States or in developing countries, forces us to delve into our concepts of living and dying. This involves facing uncertainty about the course of a disease such as HIV, the differing cultural beliefs and practices among health clinicians and their patients, challenges and ethical questions about the practice of medicine, and disparities in access to health care. The writers featured here may come from a variety of settings and backgrounds, but the stories that they address center upon these common themes.
For Peter Selwyn, MD, MPH, and his co-authors, palliative care provides the framework for treating a terminal illness when it is difficult to predict the end of life. The staff of Montefiore Hospital's palliative care project work in a large urban setting with individuals who are from very poor areas of New York City and are primarily Hispanic and African American. Their work illustrates how a palliative care consultative service can be integrated into an HIV clinic where the goal is to cure individuals. This care team must address the physical, psychological, and social issues of patients who seem to be dying but who then may stabilize once both curative treatments and palliation are integrated. The prognostic uncertainty of HIV, as Dr. Selwyn terms the dilemma of HIV disease progression, raises challenges to the traditional American emphasis on placing palliation at the end of life and to existing insurance reimbursement mechanisms. This project also provides information on the extent to which patient needs can be met. Based upon an analysis of their patient data, the authors find that their integrated care does improve some psychosocial and physical symptoms, care planning decisions, and patient-family-caregiver relations. Other patient problems, such as depression and fatigue, remain.
The work of Selwyn et.al. is part of the effort by the US Department of Health and Human Resources, Health Resources and Services Administration's (HRSA), HIV/AIDS Bureau to consider how palliative care might be addressed among people who are ill with HIV. The US Institute of Medicine (IOM) in its landmark study, Approaching Death, recommended, "care for those approaching death should involve and respect both patients and those close to them."2 It then called for research to increase our understanding of the best practices associated with quality palliative care.
In 1999 HRSA responded to this IOM report through six Special Projects of National Significance (SPNS) palliative care grants.3 (These projects include five intervention grantees and one evaluation center.) SPNS is the research and demonstration program of the Ryan White CARE Act, which funds HIV care for underserved populations within the United States. The SPNS palliative care projects were funded to implement innovative models of palliative care. The projects focused on HIV as new treatments offered the possibility of life for many but still left a sizable group of individuals (approximately 15,000-17,000 individuals a year)4 who still were dying. In addition to health care, the grantees had to include in their projects interventions for those patients who lack food, shelter, and basic access to curative care. In the United States, individuals diagnosed with new HIV infections frequently come from minority populations and face historical barriers to accessing quality health care. How could palliative interventions be designed to address the multiple barriers to care? The SPNS efforts build upon the ongoing hospice and home health care services funded since 1991 by the Ryan White CARE Act. These services are part of the 27 health and supportive services for individuals diagnosed with HIV that are supported by the Act.5
Dr. Barbara Hanna is a second SPNS grantee. She and her staff at the AIDS Service Center operate a primary care clinic in rural Alabama that provides HIV services as part of the Ryan White CARE Act. Their staff must struggle with issues such as patients' lack of transportation, home visits that consume large amounts of travel time, uninsured individuals who require expensive pharmaceuticals, the stigma associated with HIV, and migrant populations working in area farms and factories. Visualize a recently built, one-storey, small white building on a winding country road. This building serves as the clinic. Nearby portable units provide office space. Two small apartments provide living space for two patients with advanced AIDS. Dr. Hanna is the one full-time physician providing HIV care at the clinic and in her Personal Reflection she describes her perspective on caring for individuals with AIDS at the end of life.
While not presented in this issue, the University of Maryland SPNS project, located in Baltimore, presents a striking contrast to the rural AIDS Services Center Project. It shows the variation that is possible in palliative care delivery. This project is part of a large urban hospital. A majority of their patients are drug users who may be diagnosed with an AIDS-defining illness in an emergency room or an inpatient hospital bed. The project staff then must treat a variety of physical comorbidities as they create a treatment plan for both HIV and substance abuse. Placement for their clients includes substance abuse treatment centers, nursing homes, and shelters for the homeless. In some cases the staff follow patients through episodes of incarceration and absence from anti-retroviral medications. As a consequence of these special needs, their care team includes a physician palliative care specialist, a nurse coordinator, an addictions counselor, social worker, and a chaplain. Patient health may improve as clients are released from jails and are given access to curative therapy. It then may fail as their circumstances limit access to medical care. Patient care is further complicated by individual histories of discrimination, sporadic use of health services, and mental illness. These SPNS projects illustrate both the differences and commonalities of creating palliative care models for underserved populations in the United States. They also share common challenges with international palliative care projects.
The impact of stigma has implications for palliative care both for the United States and internationally. The International Perspective in this issue offers a valuable portrait of efforts in Uganda to care for patients suffering from HIV/AIDS. Many more individuals die from HIV in developing nations than in the United States. Dr. Anne Merriman and her coworkers operate Hospice Uganda where with very limited resources, they provide home health care, clean wrappings, and pain medications to individuals in both urban Kampala and outlying rural areas of the country. Each morning they assemble in their headquarters, a mixture of reclaimed buildings and a new training center, to schedule their day's home visits and to review available medications. Most of their patients lack access to diagnostic tests; the causes of their illnesses are unknown. But the home health care team, which combines community workers and health professionals, brings each individual pain relief and comfort. A visit to Hospice Uganda gives one a sense of hope in the midst of much death and suffering. Their experience emphasizes the importance of simple supportive and palliative services and is a public health success story in an area of the world rich in human resources but limited in many other resources, including health care.6
The experiences described by all of the authors provide a roadmap for strengthening palliative care—especially for underserved populations within the United States—as well as for responding constructively to HIV internationally. Despite the different populations and care settings addressed in this issue, the authors found that flexibility in therapies, integration of curative and palliative care, and a wide variety of support services are necessary. The conditions that led to care challenges stemmed not just from HIV but also from many other life experiences that patients faced. Such conditions required a flexible approach to delivering services. As Approaching Death and other related literature state,7 much evidence is needed to formulate new palliative care policies and programs. These projects have begun to gather such evidence for designing palliative care that is targeted to underserved populations who may reside in resource poor settings. These efforts model ways to address pain and suffering, and provide comfort today.
1. Orazio and Artemisia Gentileschi: Father and Daughter Painters in Baroque Italy, Special Exhibit of the Metropolitan Museum of New York. February 14, 2002–May 12, 2002. Viewed April 2, 2002 at www.metmuseum.org.
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2. Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy of Medicine, 1997, 4. [Return to Editorial]
3. O'Neill JF, Marconi K, Surapruik A, Blum N. Improving HIV/ AIDS services through palliative care: A HRSA perspective. Journal of Urban Health. 2000;77(2):244-254.[Return to Editorial]
4. Center for Disease Control (CDC), Division of HIV/ AIDS prevention, US HIV and AIDS cases reported through June 2001 13(1) www.cdc.gov/hiv/stats/hasr1301.htm
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5. HIV/AIDS Bureau, Health Resources and Services Administration. http://hab.hrsa.gov/
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6. Barnard D. International Policy Report. Journal of Palliative Medicine. 2002;5(1):159.[Return to Editorial]
7. Grady PA, Knebel AR, Draper A. End-of-life issues in AIDS: The research perspective. Journal of the Royal Society of Medicine. 2001;94:479-482.[Return to
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