'That's why I wanted him to go on dialysis' - a qualitative inductive thematic analysis of older patients' and their family members' perspectives on kidney failure treatment decision-making.

BACKGROUND

Chronic kidney disease (CKD) is increasingly common amongst frail older patients with multiple health problems. These patients typically decide between kidney replacement therapy (KRT) with dialysis, which carries uncertain survival benefit with significant treatment burden, and conservative kidney management (CKM). A person-centred approach to this shared decision-making process is advocated. Family members are known to be important in these decisions. Nonetheless, data exploring family member perspectives are limited. We aimed to explore how older, frail and/or comorbid patients with CKD and their family members understand and approach decision-making regarding treatments for kidney failure.

METHODS

Semi-structured interviews were conducted, in person, in 2018-2019, with older patients with advanced CKD (≥ 80 years or ≥ 65 with evidence of frailty or comorbidity) and at least one family member per patient. Interview transcripts were analysed using inductive thematic analysis with constant comparison within and between family units. Meanings and concepts were discussed between study investigators, to generate a coding framework and develop major themes.

RESULTS

Ten patients and 12 associated family members were interviewed. Three major themes were identified: (1) "whose decision is it anyway?" concerns ownership of treatment decisions; (2) "on death, dying and uncertain futures" describes relational elements of participants' thoughts of the future; and (3) "caring and being cared for" explores the importance of physical and emotional caring roles and love and care in relationships.

CONCLUSIONS

Family members appear to have significant influence on older patients' kidney failure treatment decisions, which can occur outside the shared decision-making support offered to patients. The inextricably intertwined daily lives of co-habiting patients and family members means that treatment decisions impact and depend upon both family members and patients. Kidney services should adopt a 'family-centred' (rather than individually 'person-centred') approach to decision-making support and must develop ways to embed this in clinical practice.