Background Advance care planning (ACP) should begin from the time of diagnosis.
Aim To survey the self-reported needs of adults living with HIV/AIDS for end-of-life care.
Methods A 2-arm, randomised, controlled trial of ACP is being conducted in Washington, DC with adults with HIV/AIDS aged ≥21 years and their surrogates beginning October 2013. N = 111 patient/family dyads. Patients were mean age 51 (range 22–74 years), 54% male, 96% African-American and 42% impoverished. Before randomization, participants completed Lyon Advance Care Planning Survey-Patient and Surrogate Versions, 31-items on a 5-point Likert-scale. Prevalence-adjusted bias-adjusted Kappas (PABAK) were calculated.
Results At baseline, there was almost perfect agreement (PABAK 0.81–0.99) about the importance of: Understanding treatment choices (98%); being physically comfortable (94%); Being able to complete an advance directive (91%). Slight agreement (Kappa = 0.16) for Being off machines that extend life (49%); fair agreement (Kappa = 0.52) on dying a natural death. Patients preferred to discuss ACP while healthy, 67%. Agreement about best time to “bring up end of life” was slight, to less than chance (30% before getting sick; 1% when first diagnosed; 0% when first sick, first hospitalised, if dying).
Discussion Important areas of agreement existed without an ACP intervention. However, only slight agreement existed for withdrawing treatment and when to initiate ACP conversations.
Conclusion Poor, minority, HIV positive patients are willing to engage in advance care planning with surrogates. Routine, standardised interventions may provide the optimal setting for facilitating conversations about dying a natural death or being on machines that extend life.
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