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H H S Department of Health and Human Services
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Delivering End-Of-Life Care to Individuals with HIV/AIDS: A National Approach

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Summary

A new initiative by the HIV/AIDS Bureau in the Health Resources and Services Administration, U.S. Department of Health and Human Services, is addressing the emerging challenges in providing appropriate care and services to individuals dying from HIV/AIDS who have difficulty accessing the health care system. Special Programs of National Significance (SPNS) is supporting innovative service delivery models targeted to people with HIV/AIDS who are homeless, uninsured, substance abusers, and/or mentally ill, and individuals in or about to be released from correctional facilities. Through SPNS, five demonstration projects, encompassing rural, urban and suburban settings, are testing different models of end-of-life care delivery and service provision with various medically underserved and hard-to-reach populations dying from HIV/AIDS. A unique feature of this initiative is the establishment of an evaluation and technical support center to oversee a site-specific and multi-site evaluation effort and assist in the dissemination of information that will foster the replication and adaptation of viable service models with these populations.

Introduction

A new initiative by the HIV/AIDS Bureau in the Health Resources and Services Administration, U.S. Department of Health and Human Services, was developed to address emerging challenges in providing appropriate care and services to individuals dying from HIV/AIDS who have difficulty accessing the health care system. Although the death rates from HIV/AIDS have fallen in recent years, AIDS is still a fatal disease and each year at least 20,000 people die from it in the United States alone. Despite these treatment advances, AIDS remains a terminal illness. For those who are unable to tolerate the treatment or for whom aggressive therapy is no longer effective, the provision of palliative care is essential.

HIV disease is increasingly affecting segments of society that have traditionally lacked access to health care -- the homeless, uninsured, substance abusers, and individuals in or about to be released from correctional facilities. These individuals are doubly disadvantaged. Hard-to reach and medically underserved, their lifestyle and behavior (e.g., substance abuse) adversely impacts treatment adherence and efficacy.
There are differences in the provision of palliative care to HIV/AIDS populations that are not addressed within a “standard” palliative care service model. The special requirements and characteristics of both the disease and the affected population necessitate that care be delivered within the societal context of the epidemic.

HIV/AIDS is still a stigmatized disease. It is still a much feared illness and infection concerns are not uncommon among individuals who have had little contact with infected individuals. The disease trajectory is erratic, episodic and unpredictable, presenting challenges in determining when it is appropriate to institute palliative care. Opportunistic infections and disease complications increase in number and severity in the advanced stages of the illness and attending to the multiple medical problems may involve procedures and treatments that are not commonly applied in palliative care settings and that blur the distinction between palliative and active treatment.

For many individuals dying from HIV/AIDS, family and friendship networks may be unstable or non-existent. Ensuring appropriate care for these individuals in the absence of informal support networks can present a formidable challenge at end-of-life. For some HIV-infected populations, their lifestyle imposes unique treatment challenges. For example, adequate pain management for a substance abuser with advanced HIV requires special consideration and an understanding of addiction. Another challenge to palliative care with these population groups is that some issues related to the infected individual’s life circumstances may have to be addressed before illness needs can addressed. For example, a homeless individual, dying of AIDS, may spend his final days in a shelter where staff are untrained in and ill-equipped to provide hospice care.

Expert and accessible palliative care services are not systematically available in many medical settings, particularly in impoverished communities. The services that exist in these settings are often fragmented, making it difficult to maintain continuity of care, particularly for those populations who have difficulty accessing these systems, such as the homeless, uninsured, and substance abusers.

Methods

Special Programs of National Significance (SPNS) supports innovative service delivery models targeted to people with HIV/AIDS who are medically underserved. Through SPNS, five demonstration projects, encompassing rural, urban and suburban settings, are testing different models of palliative care delivery and service provision with various medically underserved and hard-to-reach populations dying from HIV/AIDS. These programs illustrate how an awareness of the life circumstances and lifestyle of affected population can inform the range, focus and delivery site of the palliative care programs.
A unique feature of this initiative is the establishment of an evaluation and technical support center to oversee the evaluation effort. The center is also facilitating the interchange of knowledge and specialized expertise in the provision of appropriate end-of-life care and will assist in the dissemination of information that will foster the replication and adaptation of viable service models with these populations.

Results

The five demonstration projects are targeting diverse population groups -- the homeless, substance abusers, the incarcerated, multiple-diagnosed mentally-ill, and the uninsured poor. The types of palliative services the programs provide are varied. They range from a full palliative care service to links to a hospice care provider to case management. Social services, family psychosocial support, spiritual support, community-based housing and personal care services are also provided in some of the programs.

The site of the service delivery also varies, reflecting the services provided and the type of population served. The sites include the client’s home, a community hospice residence, community clinics, hospital outpatient clinic, hospital inpatient unit, hospital inpatient hospice unit, and jails. The delivery of palliative care at these sites is generally integrated within the continuum of services provided to individuals with HIV/AIDS. Such an approach facilitates a seamless transition between active treatment and palliative care, eliminating gaps in care, and increasing the likelihood that clients continue in the program. It may also foster the acceptance of palliative treatment by clients and their families. The composition of the palliative care team is multidisciplinary and reflects the services provided and characteristics of the client populations. Key program personnel may include physicians, nurses, social workers, psychologists, clergy, health aides, addiction specialists, and outreach workers.
In one project, Volunteers of America, is providing transitional case management to seriously-ill jail inmates at two urban locations in New Orleans and in California. A nurse and social worker care team provide case management to inmates while they are incarcerated. The care team then provides transitional case management to facilitate links to available hospice programs and social service resources when inmates are either transferred to a prison or released from jail to assure ongoing delivery of palliative care services regardless of the inmate’s ultimate placement.

In another project, Catholic Community Services is establishing a community residence for homeless, multiply-diagnosed terminally-ill HIV/AIDS clients in an urban area of New Jersey. The program provides the homeless with a residence and home health aides who perform needed personal care services, requirements that will enable links to be established with local hospice providers who will deliver hospice care to the residents in the home. The project care team includes a social worker, nurse, and health aides.

AIDS Services Center, Inc., a third project, is using a hospice service model to provide medical and supportive services to terminally-ill HIV/AIDS patients in rural Alabama. The populations served are primarily poor, uninsured, alcoholics and homeless. The multidisciplinary care team delivers both in-home and clinic-based hospice care. The program is also facilitating the establishment of a community hospice residence for terminally-ill HIV-infected clients who are homeless and will deliver hospice care to the residents.

The project by the University of Maryland is implementing an augmented hospice model in Baltimore to provide palliative care to terminally-ill HIV/AIDS patients who include substance abusers, the homeless, multiply-diagnosed, uninsured urban poor. The multidisciplinary care team includes a physician, nurse, social worker, chaplain, as well as an addictions specialist. The palliative care services are delivered to terminally-ill patients at community clinics for the homeless and substance abusers, a hospital HIV unit and long-term care facility.

Montefiore Medical Center’s project is implementing a similar augmented palliative care model to deliver a range of services to seriously-ill HIV-infected patients in the New York metropolitan area. The client population includes the uninsured poor, substance abusers and homeless. In addition to a physician, psychologist, nurse, social worker, and chaplain, the multidisciplinary care team includes an addictions specialist and outreach worker. Care is delivered to patients throughout the hospital’s ambulatory care network, the AIDS center, and in the nursing and substance abuse facilities.

All the projects are collecting a common set of data elements. The elements were chosen to maximize the comparability of information across projects while recognizing the limitations imposed by substantive differences among the projects with regard to clients served, models of care/service provision, the nature of care/services provided and the health status of the client. The domains include: quality of care, quality of life, symptoms, psychological functioning, physical functioning, client service utilization, client demographics, client medical status, and client medical treatment history. An in-depth case study analysis of each project is being conducted to identify key steps in program implementation and describe barriers to access and continuity of medical care in the community served by the project. It will also document innovations or changes to the delivery care system developed to ameliorate or eliminate these barriers and identify organizational or contextual factors that facilitated or impeded such changes.

Conclusion

There are differences in the provision of palliative care to HIV/AIDS populations that are not addressed within a “standard” palliative care service model. Future advances in knowledge and skills in the provision of palliative care and supportive services to persons dying from HIV/AIDS need to build upon reliable and valid information garnered from the evaluation of agencies/programs already providing such care or services. The palliative care program initiative is intended to stimulate the adoption of improved forms of service delivery to HIV-infected individuals. Information garnered from these demonstration projects will help providers and health policy makers make informed choices about implementing similar programs in other service settings or with other client populations.