Advance care planning for patients with amyotrophic lateral sclerosis

Abstract

Purpose To determine whether an advance care planning (ACP) decision aid for could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Methods Fourty-four patients with ALS (≥21, English-speaking, without dementia) engaged in ACP using an interactive computer-based decision aid. Before participants completed the intervention, and again 3 months after, their clinicians reviewed 3 clinical vignettes, and made treatment decisions (n=18) for patients. After patients indicated their agreement with the team’s decisions, concordance was calculated. Results The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post=91.9%, 95% CI=87.8, 96.1, vs. pre=52.4%, 95% CI=41.9, 62.9; p <.001). Clinical team members reported greater confidence that their decisions accurately represented each patient’s wishes post-intervention (mean=6.5) compared to pre-intervention (mean=3.3, 1=low, 10=high, p<.001). Patients reported high satisfaction (mean=26.4, SD=3.2; 6=low, 30=high) and low decisional conflict (mean=28.8, SD=8.2; 20=low, 80=high) with decisions about end-of-life care, and high satisfaction with the decision aid (mean=52.7, SD=5.7, 20=low, 60=high,). Patient knowledge regarding ACP increased post-intervention (pre=47.8% correct responses vs. post=66.3%; p <.001) without adversely effecting patient anxiety or self-determination. Conclusion A computer-based ACP decision aid can significantly improve clinicians’ understanding of ALS patients’ wishes regarding end-of-life medical care.

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

“…Table 2 presents an overview of the content of the Web-based ACP programs, and Multimedia Appendix 2 presents the links to the Web-based programs. Target groups, for example, patients, were involved in the development of seven programs [31,[34][35][36][37][38][39][40][41][42][43][44][45]47,[49][50][51][52][53][54][55][56][57]. Four programs had a theory base [34][35][36][37][38][39][40][41][42][43][44][45]47,50,57], for example, Making Your Wishes Known was based on the Multi-Attribute Utility Theory, and PREPARE was based on behavior change theories.…”

“…Target groups, for example, patients, were involved in the development of seven programs [31,[34][35][36][37][38][39][40][41][42][43][44][45]47,[49][50][51][52][53][54][55][56][57]. Four programs had a theory base [34][35][36][37][38][39][40][41][42][43][44][45]47,50,57], for example, Making Your Wishes Known was based on the Multi-Attribute Utility Theory, and PREPARE was based on behavior change theories. Related to the key elements for ACP, we found that almost all programs provided information about ACP (10 programs) and included attention for readiness for ACP or for adequate timing of ACP ( 10programs).…”

A Randomized Controlled Trial of Strategies to Improve Family Members’ Preparedness for Surrogate Decision-Making

“…Making Your Wishes Known was scrupulously designed to follow evidence-based guidelines for decision aids, 52 and prior research has shown that it improves both patients’ knowledge about ACP as well as health-care providers’ understanding of patients’ wishes. 40 Yet, when used with family members, the increase in concordance was less than anticipated. Why?…”

“…Why? It is, of course, possible that the intervention isn’t beneficial, but multiple studies suggest otherwise, including data on accuracy, 20,30 knowledge, 19,53 and concordance 20,40 —which leads us to ponder other explanations. Perhaps the measures were inappropriate.…”

“…39 This instrument (available as Supplementary Figure S1) quantifies family members’ confidence (0-100, where 100 = greatest self-efficacy) in accomplishing tasks associated with surrogate decision-making (eg, determining specific treatments, overcoming communication barriers, and honoring patient’s wishes). Concordance was assessed using 6 previously tested clinical vignettes 40 involving situations where major medical decisions needed to be made (Cardiopulmonary resuscitation, mechanical ventilation, surgery, hemodialysis, feeding tube, and intravenous antibiotics). Patients indicated which treatments they would or wouldn’t want in each scenario, and family members separately were asked “if you had to decide now what medical treatments your loved one would want in the circumstances described, which of the following do you think he/she would want and not want?” (see Supplementary Figure S2).…”