Advanced Care Planning for HIV Patients

Increased life expectancy for HIV-positive patients spurs the need to discuss advanced care planning.

HIV has transformed into a chronic illness over the past 20 years because of effective screening, the availability of a laudable array of antiretrovirals, and better disease management education.

The majority of HIV-positive patients will be older than 50 years by 2020. This increased life expectancy is accompanied by increasing comorbidities and the need to discuss advanced care planning.

Advanced care planning is the patient-provider collaboration to plan for future health care decisions (eg, advance directives and proxy designation). The US Department of Health and Human Services recommends that all patients with chronic life-limiting conditions, such as HIV, complete advanced care planning regardless of current health status. However, no evidence-based recommendations exist guiding advanced care planning discussion with HIV-positive patients.

The journal Topics in Antiviral Medicine has published a study reviewing original research about advance care planning among HIV-positive patients. The study included articles that contained HIV and advanced care planning-related key terms from 1996 to present day.

Advanced care planning was highly variable across the included studies. The studies reported that 36% to 54% of HIV-positive patients completed end-of-life communication (eg, had a living will or power of attorney), and full advanced care planning with directives about medical intervention occurred in 8% to 47% of cases (predominantly in the acute care setting). By comparison, advanced care planning completion is 15% to 25% in the general population.

Poverty, black or Hispanic race, injection drug abuse, and social isolation were associated with lower advanced care planning likelihood. Distrust of providers, cultural discordance, belief that discussing advanced care planning will cause harm, and lack of incentive to protect survivors (eg, children) drove lower rates of advanced care planning in these populations. Meanwhile, patients with more comorbidities, advanced HIV infection, or older age were more likely to participate in advanced care planning.

Providers express reluctance to discuss advanced care planning because of inadequate understanding of a patient’s prognosis, cultural barriers, and limited time and energy. Patient movement into hospice can sever long-term patient-provider relationships, as well.

Outpatient providers should target patients with more severe illness, build a trusting relationship, and promote the well-being of survivors to induce greater advanced care planning acceptance.