Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial

Lyon, Maureen E.; Squires, Leah; Scott, Rachel K.; Benator, Debra; Briggs, Linda; Greenberg, Isabella; D’Angelo, Lawrence J.; Cheng, Yao I.; Wang, Jichuan

doi:10.1007/s10461-020-02909-y

Cited by 15 publications

(26 citation statements)

References 27 publications

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“…The sharp drop off in perfect understanding at 3-months postintervention was hidden in a previous latent transition analysis. 17 The ACP process is complex and outcomes from previous studies have been mixed. 30 This study demonstrates the effectiveness of an ACP intervention to prepare surrogates for a future decision-making role, increasing communication and understanding of a person's treatment preferences over time.…”

Section: Discussionmentioning

confidence: 99%

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Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Lyon

Caceres

Scott

et al. 2021

Am J Hosp Palliat Care

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Context: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. Objective: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls. Methods: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. Findings: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (β = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. Conclusion: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.

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Section: Discussionmentioning

confidence: 99%

“…See the study protocol 19 and previous publication for more details. 17 Session 2. Five Wishes© 24 (*60 min).…”

Section: Acpmentioning

confidence: 99%

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Lyon

Caceres

Scott

et al. 2021

Am J Hosp Palliat Care

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“…35 Results also suggest a positive trend in knowledge about hospice among ethnic minority groups. 36 Study participants trusted their clinicians and were willing to participate in a trial of family-centered advance care planning which found AA-PLWH were willing to limit treatment in some situations 37 and agreed to document their advance care plans in their electronic health record. 38 This study had limitations.…”

Section: Discussionmentioning

confidence: 99%

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation

Grill¹,

Wang

Scott

et al. 2021

Am J Hosp Palliat Care

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Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. Findings: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. Conclusion: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

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“…Women are more likely than men to be informal caregivers; therefore, caregiver gender may be differentially associated with ACP likelihood (Knowlton et al, 2015; Taylor et al, 2018). Caregivers' own health may be associated with their ACP knowledge and willingness to discuss with care recipients (Lyon et al, 2020; Nguyen et al, 2019). Finally, reciprocity (mutual giving and benefit) may be associated with quality of informal caregiving relationships, and potentially with ACP, where caregivers may be highly engaged in their care recipients' medical treatment (Mitchell et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

“…Finally, reciprocity (mutual giving and benefit) may be associated with quality of informal caregiving relationships, and potentially with ACP, where caregivers may be highly engaged in their care recipients' medical treatment (Mitchell et al, 2014). Recent findings by Lyon et al, (2020) suggest that caregivers are accurate sources of ACP knowledge about care recipients, even when preferences change over time.…”

Section: Introductionmentioning

confidence: 99%

‘The Woman Gives’: Exploring gender and relationship factors in HIV advance care planning among African American caregivers

Maragh-Bass

Sloan

Aimone

et al. 2021

Journal of Clinical Nursing

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Aims and objective Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. Background Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. Design The study was mixed methods and observational. Methods Participants completed self‐report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. Results Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as ‘being a woman’. Conclusions The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender‐specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. Relevance to Clinical Practice Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life‐sustaining treatments at end‐of‐life. ACP is crucial now more than ever, as COVID‐19 complicates care for older adults with HIV at high risk of complications.

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Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial

Cited by 15 publications

References 27 publications

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation

‘The Woman Gives’: Exploring gender and relationship factors in HIV advance care planning among African American caregivers

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