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

Aim To describe the development of a shared decision making intervention for planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services. Background End‐of‐life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End‐of‐life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end‐of‐life conversations. Health professionals report needing more skills to raise the issue of end‐of‐life care options within consultations and patients want to be able to discuss issues important to them about future care plans. Methods The development design was guided by the UK Medical Research Council's framework and a user‐centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Results Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end‐of‐life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. Conclusion An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. Implications for practice DESIRE is intended to support shared decision making about planning end‐of‐life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. Impact What problem did the study address? International guidelines recommend health professionals involve patients with kidney failure in making decisions about end‐of‐life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conver