Published in:
Open Access 01-12-2024 | Research
Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease
Published in: BMC Nephrology | Issue 1/2024
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Background
For patients on dialysis with poor quality of life and prognosis, dialysis withdrawal and subsequent transition to palliative care is recommended. This study aims to understand multi-stakeholder perspectives regarding dialysis withdrawal and identify their information needs and support for decision-making regarding withdrawing from dialysis and end-of-life care.
Methods
Participants were recruited through purposive sampling from eight dialysis centers and two public hospitals in Singapore. Semi-structured in-depth interviews were conducted with 10 patients on dialysis, 8 family caregivers, and 16 renal healthcare providers. They were held in-person at dialysis clinics with patients and caregivers, and virtually via video-conferencing with healthcare providers. Interviews were audio-recorded, transcribed, and thematically analyzed. The Ottawa Decision Support Framework’s decisional-needs manual was used as a guide for data collection and analysis, with two independent team members coding the data.
Results
Four themes reflecting perceptions and support for decision-making were identified: a) poor knowledge and fatalistic perceptions; b) inadequate resources and support for decision-making; c) complexity of decision-making, unclear timing, and unpreparedness; and d) internal emotions of decisional conflict and regret. Participants displayed limited awareness of dialysis withdrawal and palliative care, often perceiving dialysis withdrawal as medical abandonment. Patient preferences regarding decision-making ranged from autonomous control to physician or family-delegated choices. Cultural factors contributed to hesitancy and reluctance to discuss end-of-life matters, resulting in a lack of conversations between patients and providers, as well as between patients and their caregivers.
Conclusions
Decision-making for dialysis withdrawal is complicated, exacerbated by a lack of awareness and conversations on end-of-life care among patients, caregivers, and providers. These findings emphasize the need for a culturally-sensitive tool that informs and prepares patients and their caregivers to navigate decisions about dialysis withdrawal and the transition to palliative care. Such a tool could bridge information gaps and stimulate meaningful conversations, fostering informed and culturally aligned decisions during this critical juncture of care.