Older patients' experiences with a shared decision-making process on choosing dialysis or conservative care for advanced chronic kidney disease: a survey study

• Published in: BMC nephrology 2019-07, Vol.20 (1), p.264-264, Article 264
• Main Authors: Verberne, Wouter R, Konijn, Wanda S, Prantl, Karen, Dijkers, Janneke, Roskam, Margriet T, van Delden, Johannes J M, Bos, Willem Jan W
• Format: Article
• Language: English
• Subjects: Aged; Beliefs, opinions and attitudes; Care and treatment; Chronic kidney failure; Comparative analysis; Conservative treatment; Decision making; Development and progression; Elderly patients; Evaluation; Hemodialysis; Kidney diseases; Kidney failure; Medical research; Minimally invasive surgery; Renal dialysis; Shared decision making
• ISSN: 1471-2369; 1471-2369
• DOI: 10.1186/s12882-019-1423-x

Many older patients approaching end-stage kidney disease have to decide whether to go for dialysis or non-dialytic conservative care (CC). Shared decision-making is recommended to align the treatment plan with the patient's preferences and values. Little is known about older patients' experiences with shared decision-making on dialysis or CC. We performed a survey study, in collaboration with the Dutch Kidney Patients Association, in 99 patients aged ≥70 years who had chosen dialysis (n = 75) or CC (n = 24) after a shared decision-making process involving an experienced multidisciplinary team. Patients stated to be overall satisfied with the shared decision-making process (% with score 6-10 on 11-point Likert scale, dialysis versus CC: 93% vs. 91%, P = 0.06), and treatment decision (87% vs. 91%, P = 0.03). However, patients also reported negative experiences, especially those who had chosen dialysis. Such negative experiences were related to the timing, informing, and level of decision-making being shared. More patients who selected dialysis indicated to have felt forced to make a decision, mostly due to the circumstances, such as their deteriorating health or kidney function, or by their nephrologist (31% vs. 5%, P = 0.01). Also, patients who selected dialysis mentioned a perceived lack of choice as most common reason for choosing dialysis, and 55% considered their own opinion as most important rather than their nephrologists' or relatives' opinion compared to 90% of the patients who had chosen CC (P = 0.02). A subset of patients who had chosen dialysis still doubted their treatment decision compared to no patient who had chosen CC (17% vs. 0%, P = 0.03). Older patients reported contrasting experiences with shared decision-making on dialysis or CC. Despite high overall satisfaction, the underlying negative experiences illustrate important but modifiable barriers to an optimal shared decision-making process.