Discordance in HIV-Positive Patient and Health Care Provider Perspectives on Death, Dying, and End-of-Life Care

Mosack, Katie E.; Wandrey, Rachael L.

doi:10.1177/1049909113515068

Cited by 12 publications

(13 citation statements)

References 17 publications

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“…Findings by Mosack and Wandrey and others suggest that PLHIV look to their healthcare providers for education on healthcare planning, including but not limited to treatment regimens, preventive care, and ACP information [27][28][29][30]. Other studies suggest that clinicians often avoid discussion of ACP and end-of-life care entirely, due to lack of training in how to counsel patients [28,29].…”

Section: Healthcare Engagement and Acpmentioning

confidence: 99%

“…Other studies suggest that clinicians often avoid discussion of ACP and end-of-life care entirely, due to lack of training in how to counsel patients [28,29]. Furthermore, beyond discussion of these factors, rapport and trust in healthcare providers may be crucial to patients' engagement in care and willingness to discuss and/or document ACP [27][28][29][30]. Research to explore the interaction of patients, informal caregivers, and ACP discussion with healthcare providers is currently understudied among PLHIV, particularly those who inject drugs.…”

Section: Healthcare Engagement and Acpmentioning

confidence: 99%

“…Research suggests that ACP is understudied among health disparate populations, including African American PLHIV [8][9][10][11]. Previous studies have identified several possible factors which may impact likelihood of ACP discussion, including socio-demographics [15], availability of social support [17][18][19][20], and engagement in healthcare [27][28][29][30]. The purpose of the present study was to explore these and other factors related to ACP and end-of-life (EOL) preferences among African American PLHIV.…”

Section: Synthesis and Purposementioning

confidence: 99%

See 2 more Smart Citations

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

et al. 2017

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Advance care planning (ACP) is the process of planning for when individuals are unable to make their own healthcare decisions. Research suggests ACP is understudied among HIV-positive African Americans. We explored ACP knowledge, preferences, and practices with HIV-positive African Americans from an urban HIV-specialty clinic (AFFIRM study). Participants completed surveys and interviews. Descriptive analyses and Poisson regression were conducted on survey data. Qualitative interviews were coded using grounded theory/constant comparative method. Participants were mostly male (55.1%). Half rated their current pain as at least six out of ten (50.8%). Two-thirds had discussed ACP with providers or supporters (66.2%). Qualitative themes were: (1) impact of managing pain on quality of life and healthcare, (2) knowledge/preferences for ACP, and (3) sources of HIV supportive care and coping (N = 39). Correlates of having discussed ACP included: moderate pain intensity (p < 0.10), including supporters in health decisions (p < 0.001), religious attendance (p < 0.05), and knowledge of healthcare mandates (p < 0.01; N = 276). Findings highlight the need for patient education to document healthcare preferences and communication skills development to promote inclusion of caregivers in decision-making.

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Section: Healthcare Engagement and Acpmentioning

confidence: 99%

Section: Healthcare Engagement and Acpmentioning

confidence: 99%

Section: Synthesis and Purposementioning

confidence: 99%

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

et al. 2017

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“…These deaths are geographically clustered in southern states (CDC, 2014; Reif et al, 2014; Reif & McAllester, 2015). Treatment failure and loss of decision-making capacity through HIV Associated Neurological Disease (Allison, Wolters, & Brouwers, 2009) also make early pACP critical in this already disadvantaged population (Mosack & Wandrey, 2015; Selwyn & Forstein, 2003). Thus, despite the currently available chronic treatment options and improved life expectancy, complications can arise at any time, especially for those with perinatally acquired HIV who were born at a time when current treatments were not available, and who may have suffered critical medical events at a young age that may have latent health effects emerge as they age into adulthood.…”

Section: Introductionmentioning

confidence: 99%

A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning

et al. 2017

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The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14–21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14–21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.

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“…Furthermore, among African-Americans, advance directive completion was significantly greater for participants in FACE ACP than HLC. The FACE trial overcame previously identified barriers to ACP completion and documentation for PLWHs 35,36 and ethnic/racial minorities. 37e41 Furthermore, approximately 40% of this sample of PLWHs reported incomes below the federal poverty level and a high school education or less, suggesting this model also overcame socioeconomic barriers to ACP completion found in previous studies.…”

Section: Discussionmentioning

confidence: 99%

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity

Lyon

Squires

D’Angelo

et al. 2019

Journal of Pain and Symptom Management

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Context. No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS. Objective. To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record. Methods. Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-makers (N ¼ 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition). Results. Patients (n ¼ 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio ¼ 6.58, 95% CI: 3.21e13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001). Conclusions. The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.

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Discordance in HIV-Positive Patient and Health Care Provider Perspectives on Death, Dying, and End-of-Life Care

Cited by 12 publications

References 17 publications

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

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

A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity

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