Palliative Care in People Living with AIDS: Integrating into Standard of Care

描述（由申请人提供）：这项多学科研究的目标是通过对患有艾滋病（PLWA）或限制生命的合并症的成年患者进行预先姑息治疗计划来减轻痛苦并最大限度地提高生活质量。无ACP或ACP差的负面后果可能包括未满足的护理或提供不必要或不想要的护理，ICU中爆发冲突，以及解雇非亲属护理人员（例如女同性恋或男同性恋伴侣）。这将是

DESCRIPTION (provided by applicant): 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 is 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 is 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.