National Institute of Nursing Research
Oregon Health Sciences University
"An advance directive can be very helpful for families making decisions about end of life issues," said NINR Director Patricia A. Grady, PhD, RN. NINR coordinates NIH end-of-life/palliative care research, a relatively new area of science. Dr. Grady indicated that less than 20 percent of adults have advance directives, "which means we must find strategies to significantly increase their use to diminish stress for both patients and families going through life's final phase."
The study focused on 74 family members whose relatives had recently died in hospitals. The researchers focused on hospital deaths because decisions to start and stop life support more often occur in hospitals. Families were interviewed twice at one to two months after the death of their relatives and again at six to nine months afterwards. Their responses indicated that half a year later their stress was still high but had notably improved. Information was also collected from the doctors and nurses who had cared for the patients.
The researchers also studied how families made decisions. In the absence of advance directives, families were more likely to push for prolonging life for the patient even when the treatments were not working and the patient was suffering. When the patient had a written advance directive to guide the family, the family was more comfortable focusing on the patient's quality of life as the guide to reaching the decision to stop life-sustaining treatments.
Virginia Tilden, DNSc, RN, the principal investigator of the study, stated "With advance directives, families are able to concentrate on improving the patient's quality of life during the time left, rather than futilely prolonging life, with high risk of making patients suffer unnecessarily."
Susan Tolle, M.D., a co-investigator of the study, indicated that "nurses and doctors can play a strong role in encouraging patients before they become gravely ill to complete advance directives and to discuss them with their families. This will reduce stress on their families down the road."
According to the study, families indicated that ending life support was the "hardest thing I have ever done in my life." Typical sentiments were "I wouldn't wish this [reaching a decision] on my worst enemy," and "I can't remember what went on because I was so upset."
Other study findings indicated that clinicians and families believed that poor quality of life and patient preference not to suffer were about equal in importance in deciding whether to withdraw life support. But families gave prolongation of life a stronger consideration than did clinicians. Both groups indicated a patient's preference, if known, was first among considerations about ending life support.
The National Institute of Nursing Research is a component of the National Institutes of Health, U.S. Department of Health and Human Services.