Researchers investigate needs of family members when a patient dies

May 09, 2002

The primary obligation of medical personnel is to the patient, yet when a patient dies, the needs of the patient's family take precedence, according to researchers at the Johns Hopkins Bloomberg School of Public Health. In a case report appearing in the May 2002 issue of the Journal of Clinical Ethics, the researchers explore several approaches for addressing the needs of families as they apply them to one particular family who experiences a sudden death.

"When you are dealing with a situation in which a patient dies, the patient's needs drop instantly - he or she no longer requires medical care. At the same time, the family's needs remain and even intensify," explains lead author David Bishai, MD, MPH, PhD, an assistant professor of population and family health sciences at the Johns Hopkins Bloomberg School of Public Health. "One who considers patients in isolation from their families may reason that anything doctors do after a patient dies is not cost-effective. But it's imperative to realize actions taken after a death have a tremendous long-term impact on families. To ignore the interests of a bereaved family can lead to tragic results. "

Dr. Bishai and co-author Andrew Siegel, JD, PhD, an assistant scientist of health policy and management at the Johns Hopkins Bloomberg School of Public Health, choose a case in which a woman was pronounced dead at her home and was never taken to the hospital to illustrate the unnecessary distress caused when medical personnel neglect the needs of the patient's family. The 38-year old woman experienced abdominal pain one evening and died from a ruptured appendix by the time her two daughters returned home from school the following day. When paramedics arrived, they took over the daughters' and neighbors' attempts to resuscitate the woman, but eventually pronounced her dead, without taking her to the hospital. The daughters stayed with their deceased mother for two hours while their father drove home. The mother's body was then taken directly to the medical examiner.

In addition to dealing with their mother's death, the experience left the daughters, ages 11 and 13, with a fear of returning to the home where she died, concern that their efforts to perform CPR were inadequate, and anger that more efforts were not taken to help her.

The case study points out that while transporting the woman to the hospital would have been of little if any benefit to her, it would not have caused her any additional harm, and it would have been beneficial for the family. Paramedics are not trained in bereavement counseling. If taken to the hospital, the family would have been in the care of emergency department staff, who are trained to provide support to suddenly bereaved families. They would also have the peace of mind that all possible efforts were made to save the woman's life.

The authors discuss three general approaches for incorporating a family's interests into medical decision making: viewing family members as patients suffering from acute bereavement; equally weighing the needs of the patient and the family; and weighing a family's interest while giving primacy to the patient's wishes. Each approach has strengths and limitations, yet all share an important feature in that they recognize the existence of obligations to the family that are not derived from obligations to the patient.

"Whether you argue the case for one or another of these approaches, the important thing to realize is that each addresses the rights of family members. Perhaps nothing should come before maximizing efforts to save the life of a patient or to respect a patient's wishes. Yet when a patient dies, the work of medical personnel is not over. Their responsibilities continue in addressing the needs of family members," concludes Dr. Bishai.

Johns Hopkins University Bloomberg School of Public Health

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