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.
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Catholic
Community Services
Elizabeth
Patterson
3040 Kennedy Boulevard
Jersey City, NJ 07306
201-798-9923,
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.
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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.
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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.
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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.
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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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