Withdrawing life support--the survivors.

We studied the impact of withdrawal of life support on surviving relatives and families of patients who died when chronic dialysis was discontinued. Fifty-four (57%) relatives answered a written questionnaire. The relatives of 70% of home dialysis patients and 27% of center dialysis answered the questionnaire. The answering relative felt most angry and uncomfortable with the decision, ascribed the least anger and most comfort to the patient and an intermediate value to the rest of the family. Staff physician and resident ranked highest in involvement in making the decision, social workers and chaplains the lowest. Once the decision was made, social workers and nurses were most caring and helpful, residents and chaplains were rated the lowest. The relatives felt that they and the patients were the ones who most often brought up the decision to stop and also made the final decision. The relatives thought that the incompetent patients were most angry and uncomfortable but that they felt that decision to be right. The family and relatives were particularly angry and uncomfortable when the patient had discontinued dialysis for the stress of the procedure alone and not any medical complications. In these cases there was most family disagreement and the staff received startling low scores, both for involvement and caring and helpfulness. In answers to open-ended questions, the relatives expressed disappointment with physicians who were unwilling to talk to them, were overly optimistic and continued too long with treatment. They wished for more openness and truthfulness. No long-term psychological harm seems to have come to the relatives and families with one exception. Our finding suggests that more meetings with families and patients and openness about problems and complications during chronic dialysis and follow-up and counseling of families after the patients have died should be helpful.