Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions

Abstract

People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals’ views in this high-risk population.

Have You Talked about It: Advance Care Planning among African Americans Living with HIV in Baltimore

“…It is possible that, even though these individuals are enrolled in HIV care, their lack of knowledge is due in part to providers who lack training in ACP and therefore do not discuss ACP with their HIV patients [55][56][57]. Regardless, these findings are supported by previous research, which suggests that African Americans living with serious chronic illnesses are often not educated or counseled about ACP [56][57][58][59].…”

End-of-Life Care and Bereavement Issues in Human Immunodeficiency Virus–AIDS

“…The stage of hospice care is one in which patients are provided with support to enter into the death and dying process (generally with a prognosis of six months or less to live). 33 Prior to the introduction of the ARVs with zidovudine (or azidothymidine/AZT) monotherapy in the late 1980s, hospice care in HIV/AIDS was routine, though it also addresses the palliation of symptoms and provision of comfort for patients. With the subsequent evolution of ARV therapy into the dual nucleoside reverse transcriptase inhibitor therapy (NRTI) era, followed by the early era of “highly active antiretroviral therapy” (HAART), a shift occurred in the care from dying with HIV/AIDS to living with HIV/AIDS.…”

Multimorbidity With HIV: Views of Community-Based People Living With HIV and Other Chronic Conditions

“…Participant characteristics have been reported elsewhere (Slomka et al, 2016); characteristics by focus group are listed in Table 1.…”

“…As reported previously (Slomka et al, 2016), four focus groups were conducted in March and April 2013 with a total of 22 English-speaking PLWH who were diagnosed with at least one other chronic condition. Participants were recruited from a large specialty HIV clinic in a Midwestern medical center using posted flyers, clinician referral, a registry of PLWH who gave prior consent to be contacted, and word of mouth.…”

“…Focus group findings were used to tailor the intervention to the target population. Themes addressing the question of participant attitudes toward hospice, palliative care, and advance care planning were the topic of an earlier publication (Slomka, Prince-Paul, Webel, & Daly, 2016). We report here on the remaining primary themes related to the research questions, Do PLWH with other chronic conditions have specific needs and, if so, what are they?…”