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

Abstract

Trial tested effect of advance care planning on family/surrogates' understanding of patients' end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)-(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)-(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients' treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (high→high transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, χ2 = 11·52, p = 0·01)], even as patients' preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients' treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3). Conversations matter.

Keywords: AIDS; Advance care planning; Congruence; HIV; Palliative care; Randomized clinical trial.

Conflict of interest statement

Conflict of interest The authors report no conflicts of interest.

Figures

Fig. 1

Flow of persons living with HIV/surrogate decision maker dyads through the advance care planning trial

Fig. 2

Persons living with HIV/surrogate dyadic congruence in treatment preferences immediately post-Session 1 comparing advance care planning arm to healthy living control arm. Situation 1: Prolonged hospital stay with ongoing medical intervention and low chance of survival. Situation 2: Treatments extend life by no more than 2–3 months with serious side-effects. Situation 3: Unable to walk or talk and need 24 h nursing care. Situation 4: Don’t know who you are where you are, or who you are with and need 24 h nursing care. Situation 5: Cardiopulmonary resuscitation (CPR)