Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT

Abstract

Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ‡13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient-surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days postintervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently). Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre-post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.

Characteristics of Advance Care Planning Interventions Across Dementia Stages: A Systematic Review

“…The studies originated from the United States (Ahronheim, Morrison, Morris, Baskin, & Meier, 2000; Catic et al, 2013; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Orsulic‐Jeras, Whitlatch, Szabo, Shelton, & Johnson, 2019; Reinhardt, Chichin, Posner, & Kassabian, 2014; Song et al, 2019) and the United Kingdom (Brazil et al, 2018; Sampson et al, 2011). The study designs were randomized controlled trials (Ahronheim et al, 2000; Brazil et al, 2018; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Reinhardt et al, 2014; Sampson et al, 2011) and pre‐ and post‐test with or without a control group (Catic et al, 2013; Orsulic‐Jeras et al, 2019; Song et al, 2019).…”

“…The studies originated from the United States (Ahronheim, Morrison, Morris, Baskin, & Meier, 2000; Catic et al, 2013; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Orsulic‐Jeras, Whitlatch, Szabo, Shelton, & Johnson, 2019; Reinhardt, Chichin, Posner, & Kassabian, 2014; Song et al, 2019) and the United Kingdom (Brazil et al, 2018; Sampson et al, 2011). The study designs were randomized controlled trials (Ahronheim et al, 2000; Brazil et al, 2018; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Reinhardt et al, 2014; Sampson et al, 2011) and pre‐ and post‐test with or without a control group (Catic et al, 2013; Orsulic‐Jeras et al, 2019; Song et al, 2019). Additionally, studies examined the efficacy or effectiveness of interventions (Ahronheim et al, 2000; Brazil et al, 2018; Catic et al, 2013; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Reinhardt et al, 2014) or assessed feasibility or acceptability of interventions (Ahronheim et al, 2000; Hilgeman et al, 2014; Orsulic‐Jeras et al, 2019; Sampson et al, 2011; Song et al, 2019).…”

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions

“…These are summarized in Table 5. Reasons for exclusion from the primary review included hypothetical decisions, 46‐49 studies not exploring effectiveness, 50‐56 a focus on non‐health‐care decisions 57 or outcomes unrelated to decision making 58 . Despite reasons for exclusion, there is merit in a narrative exploration of these interventions as many relate to large‐scale funded trials or have undergone earlier testing which may precede studies of effectiveness.…”

“…Talking Mats is presented as a practical approach to support PLwD to communicate their preferences 53,57 ; this has not been evaluated for effectiveness but could potentially enhance communication and support participation in SDM. Other interventions target either a patient‐caregiver dyad or the family member alone to establish preferences to inform future care 52,54‐56 . Górska et al, 54 present a family conferencing schedule that can be used to support care for a PLwD at any stage.…”

“…The SPIRIT study, discussed by Song et al 52 ; examines feasibility as opposed to effectiveness yet suggests a counselling intervention can support PLwD to articulate their wishes. The Compassion Intervention detailed by Saini et al, 51 also aimed to bring multiple parties together using ‘Interdisciplinary Care Leaders’ to support end‐of‐life discussions.…”