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Terminally Ill Patients Want To Share Health Care Decision-Making


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Posted: 11/22/2005

Most terminally ill patients would prefer not to make health care decisions independently and-given a choice-many would share the critical decision making with their loved ones and physicians, according to a recent study by a multi-disciplinary team of researchers from Johns Hopkins University (JHU) and St. Vincent’s Hospital in New York.

The study, published in the current issue of the Journal of Pain and Symptom Management, explored how 130 patients with terminal diagnoses would choose to involve their loved ones and physicians in making decisions about their health care. When patients are conscious and therefore able to speak for themselves, many would choose to share their decision making with their family members and physicians. Race, religion, gender, diagnosis, and health status were largely unassociated with patients’ decision making preferences.

When they are able to participate in health care decision making, 50% would make these decisions independently and 44% would share the decisions with loved ones. Only 6% preferred that their loved ones make decisions for them. Regarding decision making with their physician in this situation, 52% would share decision making with their physician, 34% would decide independently, and 15% would rely on the physician for decision making. Assuming a situation in which they were unconscious, many patients continued to favor decision making that would be guided equally by their previously stated wishes and their loved ones’ judgment about what was best for them or by their previously stated wishes alone. Regarding physician involvement in this situation however, there was a shift towards greater reliance upon the physician’s judgment about what was best for them rather than on their previously stated wishes.

JHU School of Nursing (SON) associate professor Marie Nolan, DNSc, RN, lead investigator, and fellow researchers Joan Kub, PhD, RN, School of Nursing; Mark Hughes, MD, Peter Terry, MD, School of Medicine; and Rick Thompson, PhD, School of Public Health at JHU and Daniel Sulmasy, MD, PhD and Alan Astrow, MD at St. Vincent’s Hospital, conducted the study with patients who had been diagnosed with amyotrophic lateral sclerosis (ALS), advanced cancer, or advanced congestive heart failure (CHF).

“This study of decision making at the end of life differed from many others in that it focused on how patients want their health care decisions to be made rather than on what treatments they preferred.”

says Nolan. “Although advance care planning in medicine, nursing, and the law has focused on promoting autonomous patient decision making, patients’ choices about how to involve their loved ones and their physicians in such decisions vary considerably.” She adds, “These findings suggest the need for health professionals involved in advance care planning to explore with patients how they wish to make their health care decisions.”

The study was funded through the National Institute for Nursing Research at NIH, the Fan Fox and Leslie R. Samuels Foundation, and the ALS Research Center at the Johns Hopkins University.

Read this article:
When Patients Lack Capacity: The Roles That Patients with Terminal Diagnoses Would Choose for Their Physicians and Loved Ones in Making Medical Decisions

For media inquiries, contact Lynn Schultz-Writsel at [email protected], 410-955-7552.