The goal of this multidisciplinary study is to relieve suffering and maximize quality of life through advance palliative care planning in adult persons living with AIDS (PLWA) or life-limiting co-morbidities. Negative consequences of no or poor ACP may include unmet care or delivery of unnecessary or unwanted care, conflict erupting in the ICU, and dismissal of non-relative caregivers (e.g., lesbian or gay partners). This will be the first study to assess outcomes of an ACP model in adult PLWA, integrating person-centered (growth mixed model) and traditional variable-centered analyses. The evidence-based theoretical model, Family Centered (FACE) Advance Care Planning, was designed for Black teens living with HIV and found to be acceptable in this population, resulting in universal completion of advance directives and increased congruence regarding end-of-life preferences between patients and their surrogate decision-makers. Given the underutilization of ACP in Black HIV positive teens and its demonstrated benefits, this proposal will apply the existing FACE model to adults living with advanced AIDS and/or life-limiting co-morbidities in Washington, DC, a city with endemic levels of HIV/AIDS and significant health disparities in death rates by race. This adequately powered randomized, 2-arm, controlled clinical trial of adult PLWA and their surrogate decision-makers proposes to determine if FACE increases congruence in end-of-life treatment preferences and can be maintained over time, and if FACE has a positive impact on quality of life.
The first aim i s to identify the variables influencing decision-making with respect to advance care planning (ACP) for adult PLWA, and determine the unique person-centered needs of subgroups of PLWA, as these are currently unknown.
The second aim i s to identify the best approach for standard of care in ACP, a key component of palliative care, as an end-of-life support. This approach may minimize health disparities by increasing the likelihood that adult PLWA will identify a surrogate decision-maker and use advance directives. Patients will be recruited from four hospital-based clinics and 288 patient/surrogate dyads (N=576) will be randomized in a 2:1 ratio [i.e., FACE intervention (N=192 dyads), controls (N=96 dyads)]. Patients with HIV dementia, suicidality, homicidality or psychosis will be excluded. Two 60-minute sessions will be conducted with a trained/certified facilitator at weekly intervals. Dyads randomized to FACE will complete the Respecting Choices Interview(R) (Session1) and the Five Wishes(c) (Session 2);dyads in the control group will receive a Developmental History (Session 1) and Nutrition and Exercise Tips (Session 2). Standardized self-report measures will be administered to patients and their surrogates at baseline, 3, 6, 12 and 18 months post intervention. Measures of satisfaction and communication will be administered after Sessions 1 and 2.

Public Health Relevance

Many people would like to tell their loved ones what they would want if they had a serious medical condition and couldn't speak for themselves, but they don't know how. This study will give adults living with AIDS the chance to do this and will see whether their chosen loved one knows what their wishes are, whether that stays the same over time, what they would need in order to have a good life, and whether the number of Black and non-Black persons who want to tell their loved ones their wishes is different or the same.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Special Emphasis Panel (ZNR1)
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Hardy, Lynda R
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Children's Research Institute
United States
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