Shared decision-making and planning end-of-life care for patients with end-stage kidney disease: a protocol for developing and testing a complex intervention

Abstract

Background Internationally, it has been stressed that advance care planning integrated within kidney services can lead to more patients being involved in decisions for end-of-life care. In Denmark, there is no systematic approach to advance care planning and end-of-life care interventions within kidney services. A shared decision-making intervention for planning end-of-life care may support more effective treatment management between patients with end-stage kidney disease, their relatives and the health professionals. The purpose of this research is to find evidence to design a shared decision-making intervention and test its acceptability to patients with end-stage kidney disease, their relatives, and health professionals in Danish kidney services. Methods This research project will be conducted from November 2020 to November 2023 and is structured according to the UK Medical Research Council framework for complex intervention design and evaluation research. The development phase research includes mixed method surveys. First, a systematic literature review synthesising primary empirical evidence of patient-involvement interventions for patients with end-stage kidney disease making end-of-life care decisions will be conducted. Second, interview methods will be carried out with patients with end-stage kidney disease, relatives, and health professionals to identify experiences of involvement in decision-making and decisional needs when planning end-of-life care. Findings will inform the co-design of the shared decision-making intervention using an iterative process with our multiple-stakeholder steering committee. A pilot test across five kidney units assessing if the shared decision-making intervention is acceptable and feasible to patients, relatives, and health professionals providing services to support delivery of care in kidney services. Discussion This research will provide evidence informing the content and design of a shared decision-making intervention supporting patient-professional planning of end-of-life care for patients with end-stage kidney disease, and assessing its acceptability and feasibility when integrated within Danish kidney units. This research is the first step to innovating the involvement of patients in end-of-life care planning with kidney professionals.

Kidney Clinicians’ Perceptions of Challenges and Aspirations to Improve End-Of-Life Care Provision

“… 59 In addition, a pilot study assessing the feasibility of a shared decision making tool for planning end-of-life care is currently underway and aims to facilitate a more systematic approach to advance care planning and end-of-life care within kidney care services. 60 Specific supports are also required for family and caregivers who experience overwhelming grief or have conflicting goals at the time they are required to make end-of-life decisions on behalf of their loved one. 8 System-wide changes in resources and education for clinicians are essential to support and give legitimacy to all health care professionals undertaking these discussions as part of a team approach, and clearer pathways of communication and governance are required.…”

Decisional needs in people with kidney failure, their relatives and health professionals about end‐of‐life care options: A qualitative interview study

“…complex interventions, decisional needs, end-of-life care, involvement, kidney care, kidney disease, shared decision making A detailed description of the overall study design and methods has already been reported in a published a priori protocol paper (Buur et al, 2022).…”

“…A detailed description of the overall study design and methods has already been reported in a published a priori protocol paper (Buur et al., 2022).…”

Shared decision making for patients with kidney failure to improve end‐of‐life care: Development of the DESIRE intervention

“…This article describes the steps taken to develop an EoLC SDM intervention enabling patients with kidney failure, their relatives, and health professionals to make these difficult decisions together in a timely manner, and is part of a project to develop and evaluate an SDM intervention for use in Danish kidney services (Buur et al, 2022). Our previous research to identify current practice, and the needs of multiple stakeholders, in Denmark, when making shared decisions about EoLC as part of managing kidney failure include: (1) a scoping review investigating and mapping empirical evidence of patient involvement interventions to support patients with kidney failure making EoLC decisions in kidney services (Buur, Bekker, Madsen, et al, 2023); (2) a qualitative interview study investigating the decisional needs of people with kidney failure, their relatives, and health professionals in Denmark when planning EoLC (Buur et al, 2024); and (3) a case study investigating the experiences of people with kidney failure who received decision coaching for EoLC decisions (Buur, Bekker, Mathiesen, et al, 2023).…”

“…The study is part of the ShareD dEciSIon making for patients with kidney failuRE to improve end-of-life care (DESIRE) intervention development and evaluation project carried out across four Danish nephrology departments (Buur et al, 2022). The article describes the research process, findings, and analysis behind each iteration in the design of the DESIRE intervention components.…”