Did you know that a full 20% of all dialysis patient deaths are due to the patient voluntarily withdrawing from dialysis? I’ve heard this statistic several times now and it never ceases to surprise me–this seems a bit high based on my limited personal experience–perhaps because my experiences are mostly at an inpatient tertiary care hospital, where all too often end-of-life issues are not properly addressed? Nonetheless, it appears to be relatively common, and according to the Renal Physician Association’s published guidelines for “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis“, it is appropriate to withhold or withdraw dialysis for patients with either ARF or ESRD in the following situations:
1. Patients with decision-making capacity, who being fully informed and making voluntary choices, refuse dialysis or request dialysis be discontinued.
2. Patients who no longer possess decision-making capacity who have previously indicated refusal of dialysis in an oral or written advance directive
3. Patients who no longer possess decision-making capacity and whose properly appointed legal agents refuse dialysis or request that it be discontinued
4. Patients with irreversible, profound neurological impairment such that they lack signs of thought, sensation, purposeful behavior, and awareness of self and environment.
For some other good references on this issue check out The Kidney End of Life Coalition website and the Robert Wood Johnson’s ESRD & Palliative Care Workgroup site.
The Kidney EoL coalition website is a “must” read for new nephs. There are even stories from the patient perspective on the patient and family educaion link