Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis

Although withdrawal from dialysis is relatively common among dialysis patients, little is known about the patients' consideration of withdrawal during advance care planning. We studied a stratified random sample of 400 hemodialysis patients in two geographic areas (all six dialysis units within 75 miles of Morgantown, WV, and all nine dialysis units in Rochester, NY) by reviewing responses to a questionnaire addressing issues of advance care planning. Interviews were performed by trained interviewers during a routine hemodialysis treatment. Fifty-one percent of the patients had completed an advance directive (29% had a living will and a health care proxy, 22% had a living will or proxy). Patients who had completed advance directives were more likely to have notified their decision makers of their roles (91% with a living will and health care proxy, 81% with a living will or proxy v 55% who had no advance directive; P < 0.01). Most patients had not discussed their wishes for specific interventions in the event of permanent coma: 41% had discussed mechanical ventilation; 35%, tube feedings; 25%, cardiopulmonary resuscitation; and only 18% had discussed stopping dialysis. Patients who had completed a living will and proxy were most likely to have discussed end-of-life care, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed mechanical ventilation; 55%, tube feedings; 43%, cardiopulmonary resuscitation; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients.