Older HIV-infected patients, especially those with substantial illness burden, should be counseled to complete a durable power of attorney (DPOA) for health care and an advance directive
Before the advent of potent antiretroviral therapy, the autonomy and rights of people with AIDS were common topics of discussion among patient advocacy groups and care managers . When HIV infection was more acutely life-threatening, it was incumbent upon everyone involved in the care of these individuals to ensure that they had considered advance care planning and surrogate decision-making as a routine part of care. Early in the epidemic it was common for an HIV-infected patient to have a durable power of attorney (DPOA) for healthcare and an advance directive or living will .
Since the arrival of potent combination ART, as persons with HIV infection have led healthier, longer lives, this practice has declined substantially . While studies on this topic are limited, recent data show that fewer than half of HIV-infected patients age 45-65 have completed advance care planning . In one study that included 1,432 HIV-infected persons, 50% reported discussing some aspect of end-of-life care with their provider and 38% reported completing an advance directive . In a review of studies related to HIV infection and end-of-life care that focused on data in the combination ART era (1996 to 2015 included in the study), 36-54% of HIV-infected persons reported having at least one end-of-life discussion with their practitioner and 8-47% reported completing advance directives . In this review, few patients reporting completing the advance directive in the outpatient setting; most completed it in the inpatient or pre-surgical setting.
The studies have also revealed that advance care planning discussions between patient and provider are less likely among certain patient groups, such as ethnic minorities, intravenous drug users, and those with lower education levels [4, 5]. The review identified additional factors associated with lack of advance care planning, including lower income, lower severity of illness, younger age, female gender, and social isolation . Moreover, providers reported barriers to end-of-life discussions and advance care planning, including insufficient time and inadequate training and preparation, and there were discrepancies between reported rates of end-of-life discussions between patients and providers, suggesting that patients and providers have differing perspectives on what constitutes an end-of-life discussion.
For persons with advancing age and longstanding HIV infection, particularly those with even modest cognitive or functional impairment or with multiple comorbidities, it seems wise to re-emphasize the importance of establishment of power of attorney and advance directives. While rates of opportunistic infections and AIDS-related malignancies have decreased, many individuals with HIV suffer from multiple, complex chronic conditions, making end-of-life discussions as important as ever.
The increased longevity of persons living with HIV leads to increased opportunities for advance care planning, and providers should incorporate such discussions into routine care for these individuals .
Additionally, over the past two decades, confidence in the effectiveness of established advance directives has grown. Research during the 1990s led to some discouragement about the effectiveness of advance directives in guiding care decisions (SUPPORT) . More recent research, however, has investigated agreed-upon directives established between providers and patients or their surrogates, such as the “Physician Orders for Life Sustaining Treatment” or POLST form . These newer studies have found that patients and providers may be able to have more confidence that directives will actually be followed as patients move from home to various care settings . It is important that providers incorporate discussions of end-of-life care and advance care planning into HIV primary care in outpatient settings and there is a strong need for further research and guidelines as well as continuing education and training for providers on this topic.
Updated by Brian Wood, M.D., March 2017
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