Advance care planning with patients on hemodialysis: an implementation study

Sarah L Goff,Jamie Klingensmith,Michael J Germain,Mark L Unruh,Casey Garvey,Nwamaka D Eneanya,Lewis M Cohen

doi:10.1186/s12904-019-0437-2

Abstract

BackgroundPatients with end-stage kidney disease (ESKD) on hemodialysis have limited life expectancy, yet their palliative care needs often go unmet. The aim of this study was to identify barriers and facilitators for implementation of “Shared Decision Making and Renal Supportive Care” (SDM-RSC), an intervention to improve advance care planning (ACP) for patients with ESKD on hemodialysis.MethodsThe Consolidated Framework for Implementation Research (CFIR) was the organizing framework for this study. CFIR is a theory-based implementation framework consisting of five domains (Intervention Characteristics, Inner Setting, Outer Setting, Characteristics of Individuals, and Process), each of which has associated constructs. Potential barriers and facilitators to implementation of the SDM-RSC intervention were identified through observation of study procedures, surveys of social workers nephrologists, study participants, and family members, and assessment of intervention fidelity.ResultsTwenty-nine nephrologists and 24 social workers, representing 18 outpatient dialysis units in Massachusetts (n = 10) and New Mexico (n = 8), were trained to conduct SDM-RSC intervention sessions. A total of 102 of 125 patient enrolled in the study received the intervention; 40 had family members present. Potential barriers and facilitators to implementation of the SDM-RSC intervention were identified in each of the five CFIR domains. Barriers included complexity of the intervention; challenges to meeting with patients on non-dialysis days; difficulties scheduling intervention sessions due to nephrologists’ and social workers’ caseloads; perceived need for local policy change regarding ACP; perceived need for additional ACP training for social workers and nephrologists; and lack of endorsement of the intervention by some staff members. Facilitators included: training for social workers, national dialysis chain leadership engagement and the institution of social worker/nephrologist clinic champions.ConclusionsACP for patients on hemodialysis can have a positive impact on end-of-life outcomes for patients and their families but does not take place routinely. The barriers to effective implementation of interventions to improve ACP identified in this study might be addressed by: adapting the intervention for local contexts with input from clinicians, dialysis staff, patients and families; providing nephrologists and social workers additional training prior to delivering the intervention; and developing policy that routinizes ACP for hemodialysis patients.Trial registrationClinicaltrials.gov NCT02405312. Registered 04/01/2015.

Highlights

Patients with end-stage kidney disease (ESKD) on hemodialysis have limited life expectancy, yet their palliative care needs often go unmet
Physical and mental health comorbidities associated with the diseases that commonly cause ESKD and morbidity associated with hemodialysis itself affect quality of life (QoL): pain, visual impairment, and decreased mobility due to amputation related to diabetes and loss of autonomy, fatigue, dietary restrictions, sleep disorders, and depression associated with hemodialysis [4].The multiple threats to QoL make palliative care an important consideration for patients with ESKD on hemodialysis, but their palliative care needs often go unmet [5, 6]
This study identified potential barriers and facilitators to consider in future efforts to scale-up the Shared Decision Making and Renal Supportive Care” (SDM-RSC) intervention to improve advance care planning (ACP) for patients with ESKD on hemodialysis

Summary

Introduction

Patients with end-stage kidney disease (ESKD) on hemodialysis have limited life expectancy, yet their palliative care needs often go unmet. The aim of this study was to identify barriers and facilitators for implementation of “Shared Decision Making and Renal Supportive Care” (SDM-RSC), an intervention to improve advance care planning (ACP) for patients with ESKD on hemodialysis. National and international efforts to improve palliative care for patients on hemodialysis have included interventions to increase the use of advance care planning (ACP) [7,8,9,10]. This study aimed to identify barriers and facilitators to effective implementation of Shared Decision MakingRenal Supportive Care (SDM-RSC), an intervention to improve ACP for patients with ESKD on hemodialysis who were estimated to be in the last 6 months of life [16]. The goal of this study was to inform future efforts to scale-up the SDM-RSC intervention for use in nonresearch clinical settings

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