Patient involvement interventions for patients with kidney failure making end-of-life care decisions: a scoping review

OBJECTIVE: The objective of this review was to investigate and map empirical evidence of patient involvement interventions supporting patients with kidney failure making end-of-life care decisions in kidney services.

INTRODUCTION: Clinical guidance integrating end-of-life care within kidney failure management pathways varies. Advance care planning interventions aimed at involving patients with kidney failure in their end-of-life care planning are established in some countries. However, there is limited evidence of the other types of patient involvement interventions integrated within services to support patients with kidney failure making decisions about their end-of-life care.

INCLUSION CRITERIA: This scoping review includes studies exploring patient involvement interventions evaluated for patients with kidney failure considering end-of-life care, and/or their relatives, and/or health professionals in kidney services. Studies of children under the age of 18 were excluded.

METHODS: The review was informed by JBI methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Review (PRISMA-ScR) guidelines. MEDLINE, Scopus, Embase, and CINAHL were searched for full-text studies in English, Danish, German, Norwegian, and Swedish. Two independent reviewers assessed the literature against the inclusion criteria. Data retrieved from included studies used a relational analysis framework to synthesize the data and investigate and map different patient involvement interventions.

RESULTS: The search identified 1628 articles, 33 articles met the inclusion criteria, describing 23 different interventions. Interventions targeted patients (n=3); health professionals (n=8); patients and health professionals (n=5); and patients, relatives, and health professionals (n=7). Intervention components included patient resources (eg, information, patient decision aids), consultation resources (eg, advance care planning, shared decision-making), and practitioner resources (eg, communication training). Patient involvement interventions were delivered within hospital-based kidney services.

CONCLUSIONS: The review identified several ways to support patients with kidney failure to be involved in end-of-life care decisions. Future interventions may benefit from adopting a complex intervention framework to engage multiple stakeholders in the research and design of an intervention for shared decision-making between patients with kidney failure, their relatives, and health professionals in kidney services about integrating end-of-life care options into their kidney disease management pathway.