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Researchers at Oregon Health Sciences University (OHSU) in Portland found in a recent study that family decisions to remove life support resulting in the death of a hospitalized loved one can cause high stress levels for as long as six months. Specifically, researchers observed families in which dying patients were unable to voice their own decisions near the very end of life. Researchers affiliated with OHSU’s Center for Ethics in Health Care and the School of Nursing conducted the research, funded by the National Institute of Nursing Research, a component of the National Institutes of Health. Results of the study were published in the March/April issue of Nursing Research.
The researchers studied 74 family members who had recently experienced the death of a relative in one of four large hospitals in Portland. The doctors and nurses involved in the cases also took part in the study. Researchers focused on hospital deaths because decisions to start and stop life support more often occur in hospitals. In addition to the family and caregiver interviews, family stress was measured through standardized questionnaires used to gauge emotional impact following a traumatic event. Stress levels were measured during two time periods. The first period was one to two months following death of a loved one. The second period was six to nine months after the death.
Stress levels of all families in this study were extraordinarily high, the study showed. Family stress was similar to reports from people who survived ferry and construction disasters, and was twice as high as the stress reported by people who lost their home to fire. In addition, while study families’ stress levels began to taper off, they remained high for as long as six months following the death.
While all study families reported high stress, for families of a loved one who had not provided a verbal or written advance directive, the stress levels following the death were far higher. In families that had verbal advance directives, stress levels were moderate after death. For families whose loved ones had completed a written advance directive, stress was markedly lower.
Advance directives are instructions for care near the end of life previously given by a patient in the event that they are unable to communicate their own wishes in their final days. Currently in the United States, approximately 20% of adults have completed a written advance directive. In Oregon, the statistics are much higher. In another study of recently deceased Oregonians, 68% were reported to have had a written directive.
For many family members who chose to remove life support from a loved one without a verbal or written advance directive, caregiver interviews revealed the decision often haunted them for weeks and months.
In contrast, many family members whose loved ones had previously completed an advance directive reported a sense of peacefulness in doing the right thing. "It was all clear because we talked about it and it was all on paper," another study participant explained.
"This study shows that a lot can be done to not only improve care of a patient, but also to improve difficult end-of-life experiences for their family," says Virginia Tilden, RN, DNSc, FAAN, lead author in the study, and professor of nursing and associate director of OHSU’s Center for Ethics in Health Care. "This research shows that advance directives can lift a tremendous burden from families at the time decisions must be made. Writing down your wishes so that your family members have a clear guide to follow near the end of life will reduce the stress on those you love."
In addition to the need for important family discussions, OHSU researchers note the role nurses and physicians play near the end of life. While better communication within families can do a lot to relieve stress, the study showed that communication and support by doctors and nurses profoundly impacts the experience of families," says Susan Tolle, MD, one of the authors of the study and director of OHSU’s Center for Ethics in Health Care.
"Families emphasized the need for caregivers to be truthful about the possible benefits of life-sustaining treatments and not to offer false hope," she says. "Following family decisions to remove life support, it’s important for caregivers to support family decisions to reduce the long-term feelings of guilt."