"You can't put your luck on people": a qualitative study of family views on the best interests decision-making process concerning adult kidney care in England.

Abstract

Background: When an adult patient lacks decision-making capacity, care decisions must be made on their behalf in their "best interests". We know little about the experiences of the family members of adult kidney patients with cognitive impairments, particularly in relation to best interests decisions. It is anticipated that they have varied experiences, with many feeling excluded from the most complex care decisions.

Methods: This study aimed to understand the views and experiences of family members of adult kidney patients who had undergone a best interests decision in England. Semi-structured interviews (n = 6) were conducted with family members to explore their experiences and their views of the best interests process. Interview transcripts were then thematically analysed.

Results: A range of experiences were reported, with four themes developed: prioritising patient preferences; family involvement; opposition to the best interests approach; and the importance of communication amongst all involved. Our findings suggest inconsistencies in how best interests decisions are approached in England, which can affect the nature and extent of family involvement. Participants highlighted the value of clear communication on all aspects of the decision-making process, including clarity on the roles of different stakeholders.

Conclusions: When caring for adults who lack decision-making capacity, improvements in communication amongst all involved may minimise disagreements that escalate to legal proceedings.