PROVIDING PALLIATIVE CARE TO MEDICALLY
UNDERSERVED INDIVIDUALS WITH HIV/AIDS:
INNOVATIONS IN PROGRAM DELIVERY
Funded through the Special Projects of National Significance
(SPNS) Program, HIV/AIDS Bureau, Human Resources
Services Administration, Rockville, Maryland, U.S.A.
Victoria H. Raveis, PhD, Columbia University
Daniel Karus, M.S, Columbia University
Katherine Marconi, PhD, Office of Science & Epidemiology *
Barbara Hanna, MD, AIDS Services Center, Incorporated
Elizabeth Patterson, JD, BSN, Catholic Community Services
Margaret Perrone, RN, University of Maryland, Baltimore
Herbert Rosefield, EdD, Volunteers of America
Peter Selwyn, MD, Montefiore Medical Center
* HIV/AIDS Bureau, Health Resources & Services Administration
HIV/AIDS AND PALLIATIVE CARE
•
HIV/AIDS remains a fatal disease
•
Medically underserved and hard to reach populations
increasingly affected by HIV/AIDS
•
Treatment advances have slowed disease progression
and permit medical management
•
Delivery of palliative care presents unique challenges
CHALLENGES IN DELIVERY OF HIV/AIDS
PALLIATIVE CARE
Disease-specific:
Stigma of disease
Fear of contagion
Erratic, episodic disease
Multiple medical problems
CHALLENGES IN DELIVERY OF HIV/AIDS
PALLIATIVE CARE
(Continued)
Population-specific:
Stigmatized lifestyles
Lifestyle-related treatment issues
Non-medical needs related to life circumstances
Access to medical services
Maintaining continuity of care
CHALLENGES IN DELIVERY OF HIV/AIDS
PALLIATIVE CARE
(Continued)
Community-specific:
Impoverished communities
Limitations in resources
Limitations in agency linkages
OVERVIEW OF PALLIATIVE CARE INITIATIVE
•
Special Programs of National Significance (SPNS) supports innovative service
delivery models in palliative care
•
Palliative care projects target medically underserved and hard-to-reach
populations with HIV/AIDS
•
Demonstration projects testing different models of palliative care delivery and service
•
Evaluation and Support Center established at Columbia University to foster
evaluation and replication of demonstration projects
PALLIATIVE CARE PROJECT: VOLUNTEERS OF AMERICA
Geographic locale:
Urban (New Orleans, Louisiana & Los Angeles, California)
Care team:
Nurse, Social Worker
Population served:
Seriously-ill jail inmates
Services provided:
Case management, linkages to hospice programs, linkages to
social services
Service model:
Transitional case management
Project summary:
Provides transitional case management to seriously-ill
inmates to assure ongoing delivery of palliative care
services regardless of ultimate placement
PALLIATIVE CARE PROJECT: CATHOLIC COMMUNITY SERVICES
Geographic locale:
Urban (Jersey City, New Jersey)
Population served:
Homeless multiply-diagnosed
Care team:
Multidisciplinary (Social worker, Nurse, Health aide)
Services provided:
Case management, home car, social services, family
counseling/support, links to hospice agency
Service model:
Community residential housing
Project summary:
Establishes a community residence to provide terminally-ill
homeless with the housing and personal care workers required to
access hospice care from private agencies
PALLIATIVE CARE PROJECT: AIDS SERVICES CENTER, INC.
Geographic locale:
Rural (Northeastern Alabama)
Population served:
Poor, uninsured, homeless
Care team:
Multidisciplinary (Physician, Nurse, Social Worker)
Services provided:
Medical, case management, social services, counseling, housing
Service model:
Hospice care
Project summary:
Delivery of home and clinic- based hospice care by an HIV
community clinic-based hospice team, also established a community
residence for terminally-ill homeless clients
PALLIATIVE CARE PROJECT: UNIVERSITY OF MARYLAND, BALTIMORE
Geographic locale:
Urban (Baltimore, Maryland)
Population served:
Substance abusers, homeless, multiply-diagnosed, uninsured
Services provided:
Palliative and hospice care
Care team:
Multidisciplinary (physician, nurse, social worker, chaplain,
addictions specialist)
Service model:
Augmented hospice model
Project summary:
Provides palliative and hospice services to terminally-ill
patients at community clinics, hospital HIV unit
PALLIATIVE CARE PROJECT: MONTEFIORE MEDICAL CENTER
Geographic locale:
Urban (Bronx, New York)
Population served:
Substance abusers, homeless, poor
Care team:
Multidisciplinary (physician, psychologist, nurse, social
worker, addictions specialist, chaplain, outreach worker)
Services provided:
Medical, case management, counseling, spiritual
Service model:
Augmented palliative care model
Project summary:
Hospital-based palliative care team delivers care to
seriously-ill patients in ambulatory care network,
AIDS center, nursing and substance abuse facilities
MULTI-SITE DOMAINS OF DATA ELEMENTS TO
DOCUMENT SERVICE DELIVERY AND
DESCRIBE CLIENT OUTCOMES
Client Sociodemographics
· Age
· Gender
· Racial Background
· Ethnicity
· Household Size
· Household Income
· Health Insurance Status
Client HIV Medical Status
· Current HIV Status
· CD 4 count – current, test history
· Viral load – current, test history
MULTI-SITE DOMAINS OF DATA ELEMENTS
(continued)
Client Mental Illness & Alcohol/Drug Treatment History
· Mental Illness:
Diagnosed/condition – ever/last 3 months
Care/counseling – ever/last 3 months
· Substance Abuse:
Dependent/addicted – ever/last 3 months
Treatment/counseling – ever/last 3 months
Client Service Utilization
Need for, Receipt of and Source(s) of 32 Services relating to:
· Medical/treatment services
· Substance abuse treatment
· Home health care
· Practical assistance/Social services
· Child care/Parenting Services
· Caregiver/Family Services
MULTI-SITE DOMAINS OF DATA ELEMENTS
(continued)
Quality of Care: Palliative Care Outcomes Scale (POS)
· Measures: Pain
Symptom Control
Client & family psychosocial needs
Communication
Information
· Format:
Client report (11 items) Staff report (11 items)
· Source:
Higginson, 1999
· Sample item from Palliative Care Outcome Scale:
Over the past 3 days, how much time do you feel has been wasted
on appointments relating to your healthcare, e.g. waiting around
for transport or repeating tests?
None at all
Up to half a day wasted
More than half a day wasted
MULTI-SITE DOMAINS OF DATA ELEMENTS
(continued)
Quality of Life: Missoula-Vitas Quality of Life Index (MVQOLI V-15)
· Measures: Symptoms
Functioning
Interpersonal
Well-being
Transcendence
· Format:
Client Report (15 item version)
· Source:
Byock, 1998
· Sample item from Missoula Vitas Quality of Life Index:
My contentment with life depends upon being active
and being independent in my personal care.
Disagree Strongly
Disagree
Neutral
Agree
Agree Strongly
MULTI-SITE DOMAINS OF DATA ELEMENTS
(continued)
Psychological Functioning: Mental Health Inventory (MHI-5)
· Measures: Depression
Anxiety
General well-being
· Format:
Client Report (5 items)
· Source:
Berwick, et al , 1991
· Sample item from the Mental Health Inventory:
During the past month, how much of the time have
you felt downhearted and blue?
All of the time
Most of the time
A good bit of the time
Some of the time
A little of the time
None of the time
MULTI-SITE DOMAINS OF DATA ELEMENTS
(continued)
Physical Functioning: Rapid Disability Rating Scale (RDRS-2)
· Measures: Performance in 18 areas of functioning within 3 domains
Activities of daily living
Degree of disability
Degree of special problems
· Format:
Staff report (18 items)
· Source:
Linn & Linn, 1982
· Sample item from the Rapid Disability Rating Scale:
Assess client’s mobility – ability to go outside and get about, with
wheelchair, etc. if used.
None
A little
A lot
Total (is housebound)
MULTI-SITE DOMAINS OF DATA ELEMENTS
(continued)
Symptoms: Memorial Symptom Assessment Scale - Revised (MSAS)
· Measures: Incidence, severity & distress of 32 symptom checklist
Subscales:
Global distress index
Physical symptoms
Psychological symptoms
· Format: Client report (32 items – expanded)
· Source:
Portenoy, et al, 1994
· Sample item from the Memorial Symptom Assessment Scale – Revised
During the past week did you have any of the following symptoms…Pain?
If yes, how often did you have it?
If yes, how severe was it usually?
If yes, how much did it distress or bother you?
If yes, are you being treated for this?
CASE STUDY ELEMENTS TO EVALUATE KEY ELEMENTS OF
PROGRAM IMPLEMENTATION AND
DELIVERY OF SERVICES
Description of key program elements:
Target population - eligible/served
Services provided
Service objectives/client outcomes
Staff/units providing services
Staff/agency coordination of services
Chronology of key implementation events:
Challenges faced
Barriers encountered
Strategies utilized
Successes achieved
Failures experienced
EVALUATION GOALS TO DESCRIBE:
How effective is the program in providing appropriate care?
Sufficient symptom management, appropriate quality of care,
appropriate quality of life
How efficient is the program in maintaining continuity of care?
Fewer emergency room visits, shortened length of “active treatment”
hospital stays, fewer diagnostic tests
What is needed to facilitate program replicability?
Staffing requirements, change in referral systems, integration of
services, inter/intra-organizational linkages
SUMMARY
•
Provision of appropriate care and services to individuals dying from HIV/AIDS
is an emerging challenge
•
Palliative care program initiatives are intended to stimulate adoption of improved
forms of service delivery to medically under-served and hard-to-reach populations
•
Information garnered from these demonstration projects will aid providers and
policy makers in program implementation in other settings