A 58-year-old on haemodialysis for four years tells you he wants to stop. He has capacity. How do you respond?

Question

A 58-year-old with diabetic nephropathy has been on haemodialysis for four years. He has had three access failures this year, recurrent hospital admissions and worsening peripheral vascular disease. He tells you calmly that he has had enough and wants to stop.

Accepted Answer

My first response would be to listen rather than to argue. I would find a private space and time, and ask him to tell me what has brought him to this, because four years of dialysis and three access failures in a year is a great deal and the reasons matter. I would confirm capacity for this decision, but I would be careful not to pathologise the request — a considered, consistent wish to stop dialysis in someone who understands the consequences is a capacitous refusal of treatment, not evidence of incapacity, and I would say that explicitly. At the same time I would look hard for treatable contributors, because several are common and reversible: depression, which I would screen for formally; uncontrolled pain from his peripheral vascular disease; dialysis-related symptoms such as cramps, hypotension and post-dialysis exhaustion; the burden of repeated access procedures; transport and time costs; social isolation; and carer strain at home. If any of these are driving it, addressing them may change his decision, and I would offer a time-limited trial of continued dialysis while we do so, making clear that agreeing to that does not commit him. If, after that, his decision stands, it must be respected. I would then plan the ending properly rather than simply stopping. I would tell him honestly that survival after stopping is usually days to a couple of weeks, involve palliative care early, prescribe anticipatory medication for breathlessness, agitation, pain and nausea, and ask where he would want to be and who he would want with him. I would involve his family with his consent and prepare them for what to expect. I would document everything, discuss it with the renal consultant, and make clear to him that he can change his mind at any point.

A Patient Asking to Stop Dialysis

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