PROVIDING PALLIATIVE CARE TO MEDICALLY UNDERSERVED INDIVIDUALS WITH

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PROVIDING PALLIATIVE CARE TO MEDICALLY UNDERSERVED INDIVIDUALS WITH HIV/AIDS: INNOVATIONS IN PROGRAM DELIVERY Funded

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, Ph. D, Columbia University Daniel Karus, M. S, Columbia University Katherine

Victoria H. Raveis, Ph. D, Columbia University Daniel Karus, M. S, Columbia University Katherine Marconi, Ph. D, 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, Ed. D, 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

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

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

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

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

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

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

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:

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:

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:

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

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 ·

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)

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

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 Strongly

MULTI-SITE DOMAINS OF DATA ELEMENTS (continued) Psychological Functioning: Mental Health Inventory (MHI-5) · Measures:

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) ·

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)

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

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

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

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