Mary M Mitchell1, Eric D Hansen2, Tuo-Yen Tseng3, Meng Shen3, Cynda Rushton4, Tom Smith2, Nancy Hutton5, Jennifer Wolfe6, Lee Bone3, Jeanne Keruly7, Lawrence Wissow8, Zachary Catanzarite3, Amy R Knowlton3. 1. Department of Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA. Electronic address: marymitch1@yahoo.com. 2. Harry J. Duffey Family Palliative Care Program, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins School of Medicine, Baltimore, Maryland, USA. 3. Department of Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA. 4. Department of Acute and Chronic Care, Johns Hopkins University, Baltimore, Maryland, USA. 5. Division of General Pediatrics & Adolescent Medicine, Department of Pediatrics, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA. 6. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA. 7. Division of Infectious Diseases, Department of Medicine, Johns Hopkins School of Medicine, Baltimore, Maryland, USA. 8. Department of Child and Adolescent Psychiatry, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Abstract
CONTEXT: Advance care planning rates remain low, especially among people who are HIV positive, disadvantaged, and African American. Although advance care planning can be a sensitive topic for clinicians and patients to discuss, health values clarification can be an important initial step. OBJECTIVES: The purpose of the study was to explore health values of African Americans living with HIV/AIDS and to examine correlates of these values. METHODS: Data were from the first 325 participants in the AFFIRM Care study, which enrolled adults living with HIV/AIDS in Baltimore, Maryland, who had histories of illicit drug use. Respondents were asked whether (yes/no) they thought any of six health states would be worse than death: severe unremitting pain, total dependency on others, irreversible coma, being on mechanical ventilation, nursing home residence, and severe dementia. Latent class analysis was used to group individuals by their pattern of responses, interpretable as preference for aggressive (life-sustaining) or nonaggressive (palliative) end-of-life care. Latent class regression analysis was used to examine associations between class membership and background, health status, and social variables. RESULTS: We found statistical support for a three-class latent class analysis model: 1) the nonaggressive treatment class, comprising 43% of cases, in which members perceived that every state was worse than death; 2) the aggressive treatment class, comprising 33% of cases, in which members perceived that none of the states was worse than death; and 3) the mixed class (24% of cases), in which members perceived that only four of the six states were worse than death. CONCLUSION: Three-quarters of participant response patterns had clear preferences for treatment decisions. Further research is needed to ensure inclusion of end-of-life scenarios relevant to this population.
CONTEXT: Advance care planning rates remain low, especially among people who are HIV positive, disadvantaged, and African American. Although advance care planning can be a sensitive topic for clinicians and patients to discuss, health values clarification can be an important initial step. OBJECTIVES: The purpose of the study was to explore health values of African Americans living with HIV/AIDS and to examine correlates of these values. METHODS: Data were from the first 325 participants in the AFFIRM Care study, which enrolled adults living with HIV/AIDS in Baltimore, Maryland, who had histories of illicit drug use. Respondents were asked whether (yes/no) they thought any of six health states would be worse than death: severe unremitting pain, total dependency on others, irreversible coma, being on mechanical ventilation, nursing home residence, and severe dementia. Latent class analysis was used to group individuals by their pattern of responses, interpretable as preference for aggressive (life-sustaining) or nonaggressive (palliative) end-of-life care. Latent class regression analysis was used to examine associations between class membership and background, health status, and social variables. RESULTS: We found statistical support for a three-class latent class analysis model: 1) the nonaggressive treatment class, comprising 43% of cases, in which members perceived that every state was worse than death; 2) the aggressive treatment class, comprising 33% of cases, in which members perceived that none of the states was worse than death; and 3) the mixed class (24% of cases), in which members perceived that only four of the six states were worse than death. CONCLUSION: Three-quarters of participant response patterns had clear preferences for treatment decisions. Further research is needed to ensure inclusion of end-of-life scenarios relevant to this population.
Keywords:
African American; HIV/AIDS; advance care planning; end-of-life scenarios; health values clarification; life-sustaining or palliative care preferences
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