Effect of a Disease‐Specific Advance Care Planning Intervention on End‐of‐Life Care

Abstract

Background/Objectives Advance Care Planning (ACP) allows patients to state preferences for their end of life care but these preferences are frequently ignored. Following a Patient-Centered ACP interview (PC-ACP), patients’ preferences were compared to care received at end of life. Design A randomized controlled trial was conducted with patients with Congestive Heart Failure or End-stage Renal Disease and their surrogates who were randomized to receive either PC-ACP or usual care. Setting Two centers in Wisconsin with associated clinics/dialysis units provided patients. Participants Of the 313 patients and their surrogates who completed entry data, 110 died. Intervention During PC-ACP the trained facilitator assessed the patient and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of patient treatment preferences, and assisted the surrogates in understanding the patient’s preferences and their role. Measurements Preferences were documented and then compared to the care received at end of life determined by surrogate interviews or medical charts. Results Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) but not significantly so cases where the patients could not get their wishes met about CPR than control (6/48). Significantly more experimental patients withdrew from dialysis than control. Conclusions Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision makers is needed to detect significance.

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

“…No study measured compliance with patient wishes for EOL care , arguably the most important outcome of ACP. The study by Kirchoff and colleagues found a non-significant trend towards influencing this outcome but was not appropriately powered 96 . Complex interventions like ACP also benefit from measurement models that link processes to outcomes so that mechanisms of effect can be understood and replicated or adapted in future 97 .…”

“…A "whole system" approach to ACP has been shown to be effective in improving outcomes for patients and their surviving relatives in other settings 10 , and may be similarly beneficial for renal patients. A study reported by Kirchoff and colleagues (2010, 2012) examined the effect of a comprehensive ACP intervention but could not be included because patients with CKD constituted only a minority (42%) of the sample, which was predominantly made up of patients with congestive heart failure 95,96 .…”

Healthcare Intensity at Initiation of Chronic Dialysis among Older Adults

“…Supplying this kind of information about anticipated outcomes to patients embarking on a course of chronic dialysis may help to provide a realistic foundation for future treatment decisions that are aligned with their goals, values, and preferences. [25][26][27] Figure 1. Trends in the level of intensity of care received around the time of dialysis initiation.…”

Determining Consistency of Surrogate Decisions and End-of-Life Care Received with Patient Goals-of-Care Preferences

“…3,4 Several studies have examined whether an ACP intervention promotes consistency between a patient's preferences and the treatments the patient actually receives near the end of life. [5][6][7][8] How such consistency was conceptualized and determined varied across the studies; in general a patient's early documented preferences were compared to medical record documentation of the end-of-life care the patient received (e.g., ICU admissions, CPR, mechanical ventilation, and location of death).…”