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End of Life/Palliative Care for Underserved Populations

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Despite treatment, AIDS remains terminal especially for those whom aggressive therapy is no longer effective, provision of palliative care is essential. However, there are differences in the provision of palliative care that are not addressed within the 'standard' palliative care model. Special requirements of both the disease and the characteristics of the affected population require care to be delivered within a societal context.

The purpose of this grant initiative is to evaluate five demonstration projects encompassing rural, urban and suburban settings that 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. The services range from a full palliative care service to links to a hospice care provider to case management. This initiative is intended to stimulate the adoption of improved forms of service delivery to HIV-infected individuals.

A unique feature of this initiative is the establishment of an evaluation and technical support center to oversee site specific and multi-site evaluation effort. The evaluation center at Columbia University, Mailman School of Public Health, Exit Disclaimer also assists in the dissemination of information that will foster the replication and adaptation of viable service models within the underserved populations.

The demonstration projects started in 1999 and are funded for four years. All the projects are collecting a common set of data elements. 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 the project has been 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.



Health Services Center (formerly AIDS Service Center)
Barbara J. Hanna, MD
P.O. Box 1392
Anniston, AL 36202
(256) 832-0100

Project Period:10/99 – 9/02

Target Population: People with HIV who are poor and uninsured and who live in rural northeast Alabama, many of whom are African American

Description: AIDS Services Center (ASC) provides HIV care to people with HIV/AIDS in a predominantly rural 14-county area of northeast Alabama. The adherence program ASC has developed provides three different interventions, including a modified directly observed therapy intervention, that differ in intensity to meet the specific need of the client. The baseline interview is used as a screening tool to assess which of the three interventions is most appropriate for each client. Clients enrolled in the most intense intervention will be paired with a trained buddy or buddy team. The buddy makes contact with the client daily by phone, and provides support for taking his or her medication. Clients enrolled the directly observed therapy intervention will come to either ASC or a local health department five days a week to pick up their medications. Clients enrolled in the lease intense interventions will meet with a clinic adherence panel monthly at the time of their clinic visits. Periodic re-evaluation occurs, and if the needs of a client change, s/he can be moved to a different level of intervention.


Catholic Community Services 
Elizabeth Patterson
3040 Kennedy Boulevard
Jersey City, NJ 07306

Project Period: 10/99 - 9/02

Target Population: Terminally ill, multiply diagnosed people with AIDS in an urban setting

Description: Current approaches in funding and service delivery systems for end-of-life care have left huge gaps that force homeless, multiply diagnosed terminally ill people with AIDS to seek out fragmented services that are inappropriate and not cost effective. The St. Martin De Porres Residence will offer an innovative residence-based model that takes into consideration the unique needs of terminally ill, multiply diagnosed people with AIDS.

The program was developed to address both the concrete physical needs of homeless, multiply diagnosed individuals in the final stages of AIDS (shelter, physical care, access to services) and the more spiritual aspects of end-of-life care. Based on the hospice residence model, the program will provide residents with a stable place to live and obtain hospice care and personal care services 24 hours a day, 7 days a week to help them transition through the final stages of life, including the psychological, social, and spiritual challenges they may encounter. All services will be provided by and coordinated with the resident's hospice care provider as well as other Ryan White service providers in the county.

Program evaluation will assess access, quality of life, and client, caregiver, and family needs. Dissemination will include fact sheets to service community/local collaborators, publications, local conferences, and consortia meetings.


Montefiore Medical Center 
Comprehensive Program for HIV Palliative Care at a Large Urban Medical Center
Peter A. Selwyn, M.D., M.P.H.
Department of Family Medicine and Community Health
111 East 210th Street
Bronx, NY 10467
(718) 920-4678

Project Period: 10/99 - 9/02

Target Population: Urban HIV (+) individuals

Description: Palliative and end-of-life care is not available in many medical settings, particularly for those populations in urban areas serving women, racial/ethnic minorities, and substance users. This program is a comprehensive palliative care program for patients with AIDS to be integrated into the continuum of care delivery at a large urban medical center serving the Bronx, NY and a participating institutional link to a designated AIDS Center. The program seeks to develop a model, interdisciplinary program by providing education and increasing awareness about end-of-life issues in HIV and establishing a clinical consultation program in palliative care for people with AIDS across the medical center's delivery system.

Some of the proposed activities and evaluation strategies are: 1) to describe the prevalence and characteristics of pain and other symptoms in late-stage patients with AIDS; 2) to undertake a qualitative analysis of general and HIV-specific end-of-life issues for patients, their families, and caregivers; 3) to describe the particular needs and characteristics of bereavement in families and caregivers; and 4) to monitor patients' pain and other symptoms prospectively and describe the outcomes of clinical palliative care interventions for these conditions.

Clinical outcome data and the project's model of care delivery will be analyzed and disseminated. Dissemination activities will include use of electronic communications systems to communicate with health professionals within the field of HIV care and end-of-life care.


Montefiore Medical Center 
Nancy N. Dubler, LL.B.
Moses Research Building
111 East 210th Street
Bronx, NY 10467
(718) 920-6226

Project Period: 10/99 – 9/01

Target Population: Inmates with HIV/AIDS in prisons and jails

Description: The first goal of this project is to develop a set of guidelines for the provision of palliative care for inmates with HIV/AIDS. In correctional settings, improving the delivery of palliative care will require varying regular medical practice, offering additional services, and working with correctional administration to ensure that guidelines can be implemented within the reality of conditions in prisons and jails, given the needs of security, structure, and financing.

A working group will be convened bringing together experts in correctional health, HIV/AIDS and palliative care, substance abuse, prisoners’ rights, correctional policy and legislative action. The process will include a survey of 495 institutions, both prisons and jails, to assess existing palliative care services and recommendations. Guidelines will contain: design and standards for palliative care, Description:s of infirmary and special units to meet long-term palliative care needs, suggestions for "step-down" facilities, models for consulting and crisis teams, and curricula sets for correctional officers and administrators.

Two additional objectives of the project will be to monitor implementation of these guidelines in a small number of facilities and to set markers that would move the inmate from a system of palliative care to end-of-life or hospice care. Guidelines developed by the project will be presented for publication and dissemination in standards of correctional health care published by the National Commission on Correctional Health Care.


University of Maryland  
Carla S. Alexander, M.D.
515 W. Lombard Street, Suite 500
Baltimore, MD 21201
Phone: (410) 328-5725

Project Period: 10/99 - 9/02

Target Population: HIV population served by an inner city teaching hospital

Description: The current system of care has not addressed issues related to end-of-life care for the HIV population served by an inner city teaching hospital. The target group is mainly comprised of extremely poor African Americans, with a history of intravenous drug use, 40% female, who are often homeless or extremely poor and therefore are often outside of usual care.

This model assumes that a palliative approach to care is the precursor to good end-of-life care. Proposed activities of this project include creation of a hospice-like team including a physician, nurse, social worker, and pastoral care with additional expertise in mental health, addictions, and peer outreach. Through the use of focus groups, the proposed service delivery model will document what end-of-life care looks like for HIV patients who have difficulty accessing and staying in care. The team will form relationships with the Target Population: to help keep them in care particularly during the times when they are moving between care sites, for instance from hospital or long-term care to outpatient follow-up. The team will also operate an interdisciplinary clinic for consultation at two outpatient settings regarding the treatment of pain and other symptoms.

Subsequently, the project team will evaluate the effectiveness of this model in establishing relationships that might better engage patients in care and in planning for the future with respect to advanced care planning. Dissemination activities will include a teaching model for the AETC program and a disciplinary rotation for students and staff at the University of Maryland.


Volunteers of America 
Bert Rosenfield, EdD
GRACE (Guiding Responsive Action for Corrections at End-of-Life) Project in Jails
110 South Union Street
Alexandria, VA 22314-3351
(703) 548-2288

Project Period: 10/99 - 9/02

Target Population: Jail inmates who are HIV (+)

Description: Jail inmates continue to die of HIV infection and AIDS at a higher rate than other populations with HIV/AIDS. Because utilization of community health and social services is low and knowledge of end-of-life services is even lower, inmates are generally underserved. This project will demonstrate how quality end-of-life care can be provided for inmates with terminal HIV/AIDS.

This unique project will develop a case management model that reaches inmates while they are incarcerated and supports their transition to the community. The project will be implemented and refined in Orleans Parish, Louisiana and Alameda County, California. An evaluation will be conducted by the George Washington University Center to Improve Care for the Dying, a recognized leader in the field.

Project activities will include: 1) collection of information on other jail initiatives for terminally ill inmates; 2) use of a "Charette," an intensive product-oriented work session to develop a prototype program for jails; 3) development of "webs of support" in each site based on linkages and agreements with community resources; 4) case management that reaches inmates soon after a terminal diagnosis and assists the inmate to receive quality end-of-life care; and 5) utilization of Coordinating Committees at each site.

The project will focus dissemination efforts on the 3200 jails in the country, as well as organizations funded through the CARE Act. A replication handbook will be developed in addition to planned articles and presentations.


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