The finding:
This study presents baseline responses to an end-of-life (EOL) care survey from a larger parent advanced care planning (ACP) clinical trial. The aim was to examine palliative care needs and preferences of people living with HIV (PLWH) and to explore differences by gender, race and sexual orientation. Overall, women and African Americans prioritized relationships at EOL while males and non-African Americans prioritized self-determination over relationships. Only 8% of participants had discussed EOL care with their physician, while a large majority thought that their physician would follow their EOL wishes. African Americans (AA), compared to non-AA, were more likely to prefer to die in a hospital and less likely to prefer to die at home. African Americans’ attitudes toward pain medications comprised wanting medication only when pain was severe and wanting to delay larger amounts of medications until the pain was greater. A minority and lower proportion of AA responded that “living with great pain” was worse than death, although this difference did not reach statistical significance. Women were significantly more likely than males to prefer church-related sources of comfort, to want to plan their own funerals, and to value a life review with their families before dying. Sexual minorities were more likely to be afraid of dying alone and less likely to see church and clergy as important sources of support, compared to heterosexual PLWH. They were also less likely to wait until pain was severe before taking pain medications. Participants with a high school or less education were more likely to delay pain medications and to be afraid of being given too much pain medication.      

Strength and weaknesses:
The study took baseline data from a large five-site, randomized, controlled clinical trial in Washington DC, an area with a high prevalence of HIV. It fills a gap in knowledge about end-of-life (EOL) care goals of PLWH, a group that is less likely than individuals with other serious illnesses to talk to their healthcare team about palliative care needs. The study also focuses on unique aspects of EOL care of African Americans, a group that is disproportionately affected by HIV, and women, for whom advance care planning needs have not been well studied. It is the first study to examine EOL care goals and values of PLWH who identify as sexual minorities. It is also the first study of its kind to include transgender persons. The study is limited by its cross-sectional design which constrains conclusions about causality. The clinical sample of real-world patients drawn from several HIV programs make findings generalizable to other clinical practices, although they may not apply to locations beyond Washington, DC. The clinical sample may also be biased toward PLWH who trusted their physicians and who were more comfortable discussing death and dying. While face-to-face survey administration may have introduced social desirability bias, it decreased non-response bias and increased data collection. Obstacles such as low literacy and education were mitigated by face-to-face administration. 

Relevance:
This highly relevant study refines our understanding of PLWH’s end-of-life concerns by examining them by race, gender and sexual orientation. Although treatment advances have resulted in a dramatic decline in mortality, the growing proportion of older PLWH as well as higher-than-expected rates of medical comorbidity have highlighted the importance of this point along the HIV continuum of care. HIV prevention and medical care have been hampered by limited ability to reach disproportionately affected sexual and racial minority groups. Improved understanding of these groups’ advance care planning goals will help prepare for future palliative care needs. Study findings related to racial differences in individuals’ pain tolerance, meaning of pain and views on use of pain medications are especially important. Findings should better inform a culturally sensitive pain management and palliative care approach. For example, forgoing pain medication by an African American individual may derive from deeply held values, beliefs and preferences. Lower educational level was associated with the wish to delay taking pain medication until pain was severe. This finding may contribute to under-treatment of pain and an opportunity to improve education of individuals about the negative effect of delaying pain treatment. The preference of individuals to die in a hospital may reflect limited home resources and support or concerns about HIV disclosure, thus emphasizing the importance of patient-centered care. Sexual minorities had a less favourable view of the church and religion as a source of support and were more afraid of dying alone. These findings confirm previous research and heighten the urgency to address stigma in the church and other social institutions.

Type of study:
This study presented baseline data, before randomization, of a larger parent multi-site, randomized, controlled Advance Care Planning clinical trial. Other (enter a free text description on the document)