In the course of an extensive investigation designed, planned, and implemented with the cooperation of my colleagues from the Division of Medical Ethics at the LDS Hospital and University of Utah School of Medicine, we learned some surprising things about how family members feel treated during the course of their relative's final illness. We set out to determine how the relatives of patients who died in Utah in 1992 believed their family member would have responded to an offer of physician-assisted death or euthanasia. The last question in our structured telephone interview was: "Is there anything else you'd like to tell us?"

Over 80% of the informants we contacted agreed to participate in our study. We interviewed over 1,400 survivors of patients who had died at least six months before our interview. While 90% of the individuals we talked to were satisfied with the medical care that their relative had received, their answers to our final question alerted us to a different issue that we had not systematically investigated. When we categorized these spontaneous responses under the headings: Involvement in Medical Care, Emotional Support for the Family, and Communication About the Patient's Illness, we found that more of the responses were negative than positive. This is important, we believe, because family members help shape public opinion about medical care, and they may project some of the concerns they feel as relatives to a future situation in which they may be patients themselves.

We were pleased that many of them even offered constructive suggestions about how to solve some of the problems they experienced. They recognized that families need to be better educated about the medical facts of a patient's case, that they need more frequent and more straight-forward communication from the medical professionals, and that they should be able to get some emotional support near the time of the patient's death, and for some time thereafter.

We plan to share this information and insight with our fellow health professionals, and hope that it will lead to improvement in the care we give to patients and to a significant change in the care and attention we direct to their family members.

--Jay A. Jacobson, M.D.