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

Abstract

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.

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences

“…This study has some strengths. The findings confirm the results of 2 other trials of the FACE model, 25 , 26 using a rigorous trial design, 61 vigilant blinding of assessors, and high participant retention across a 2-year period, even though the studies were conducted in different patient groups and with different interventionists. This replication of findings provides confidence in the interpretation that the FACE-TC intervention can support long-term family knowledge of their adolescent’s end-of-life treatment preferences.…”

“…Choices for each situation were as follows: to continue all treatments so I could live as long as possible (staying alive is most important to me no matter what), to stop all efforts to keep me alive (my definition of living well is more important than length of life), or unsure. The Statement of Treatment Preferences method has been used in multiple adolescent 25 , 28 , 30 and adult studies, 26 , 39 increasing its replicability.…”

“… 7 , 24 Determining whether early pACP conversations are effective over time is critical to patient-centered or family-supported care. The unanswered question is whether families can sustain knowledge of the patients’ treatment preferences over time, even as these preferences change, as demonstrated among adolescents 25 and adults 26 with HIV.…”

Advance care planning and caregiver outcomes: intervention efficacy – systematic review

“…We conducted a meta-analysis of RCTs (ACP vs usual care/attention-control intervention)7 8 10 12 16–25 assessing caregiver–patient congruence in EOL care preferences using Stata 17. We excluded one study that reported caregiver–patient congruence in EOL care preferences within latent classes 26. For studies reporting the outcome at multiple time points or hypothetical situations, we included results closest to the intervention and for situations where survival probability was deemed to be the lowest, respectively.…”

Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making

“…In RCTs across a wide range of populations from adolescent cancer, adult HIV, heart failure, and dementia patient, both interventions demonstrated efficacy in improved dyadic understanding and concordance of preferences, confidence in decision making, anxiety and depression among caregivers, and decisional conflict. [20][21][22][23][24][25][26][27] More recent dyadic ACP models primarily focused on the emotional and collaborative aspects of shared decisions by reducing emotional reactivity with mindfulness stress-reduction techniques; promoting improved consensus by having dyads complete advanced directives separately, then together; and emphasizing collaborative coping. [28][29][30][31] While these more recent models demonstrated preliminary efficacy in reducing decisional conflict, improving preference concordance, and lowering distress over time, they are largely limited by smaller sample sizes and the lack of a control group.…”