The family perspective of ESRD deaths

Background: Nephrologists need to become more aware of how patients die. Methods: Families of patients who died after receiving dialysis at 5 New England nephrology clinics were contacted and informed about the study. Postal questionnaires were completed 6 to 10 weeks after deaths to elicit the family members' perspectives. The tool inquired about quality of dying, site of death, advance care preferences, whether dialysis was discontinued, and terminal symptoms. Results: There were 188 deaths, and 86 completed questionnaires (46%) were returned. The majority (64%) of family members believed that the patient had a peaceful death, followed by those who were unsure (24%), and those who thought the death was not peaceful (12%). Most deaths took place in institutional settings (56% in the hospital and 14% in nursing homes), and one quarter (27%) of the deaths occurred at home. Whereas some respondents perceived that patients preferred treatment to primarily extend life (28%), more believed that relieving pain (49%) was of greater importance, and the balance (24%) were unsure. Three quarters of the patient population were observed to be in pain during their last week of life. Pain was assessed as being extremely or moderately severe in more than 90% of patients. The second most distressing symptom was weakness or fatigue, followed by dyspnea, gastrointestinal problems, anxiety, and depression. There was significantly less likelihood of pain in the last week of life for patients who died at home compared with those who died in an institution. Conclusion: Nephrologists need to explore new ways to improve symptomatic treatment and minimize suffering of dying dialysis patients. These findings are the first step in benchmarking the prevalence and severity of terminal symptoms.