November 4, 2019

First study of how family religious and spiritual beliefs influence end of life care

Critically ill patient in a hospital bed comforted by a loved one

Study led by Regenstrief researcher finds belief in miracles influenced choices

In the first study to investigate the association of the religious and spiritual beliefs of surrogate decision makers with the end of life decisions they make for incapacitated older adult family members, Regenstrief Institute Research Scientist Alexia Torke, M.D., and theological and scientific colleagues have found that the surrogate’s belief in miracles was the main dimension linked to preferences for care of their loved one.

“If the surrogate decision maker believed that a miracle might occur and change the course of their loved one’s illness, the surrogate was more likely to choose aggressive treatment and was less accepting of a comfort-focused care plan,” said Dr. Torke, who led the groundbreaking study. “We found that belief in miracles was associated with the surrogate decision maker not wanting the patient to have DNR [do not resuscitate] code status. Patients were also less likely to receive hospice services.”

When older adults are hospitalized, many do not have the capacity to make decisions for themselves and rely on spouses, children, siblings or other family members.

Dr. Torke said she conducted this study because understanding the process used by surrogates to make decisions for incapacitated family members is important for the clinical team as well as spiritual advisors. If there is conflict between the medical team and the family member, especially if they disagree about the value of continuing or discontinuing life-sustaining treatments, Dr. Torke says chaplains can help clinicians gain a deeper understanding of how the family member feels and also support and counsel the surrogate through difficult decision making.

A majority (59 percent) of the surrogate decision makers who participated in the study indicated that they believed a miracle might save the patient. Study participants were predominately Protestant Christians. Dr. Torke hopes to conduct a future national study with a more religiously diverse population.

While this is the first study of the role of religiosity and spirituality in end-of-life decision making by surrogates, studies of patients making decisions for themselves have shown that, on the whole, patients who are more religious tend to want more aggressive, life-sustaining treatments and they also tend to receive more aggressive life-sustaining treatments. This differs from the association of the religious and spiritual beliefs of surrogate decision makers with the end-of-life decisions, which found that only the surrogate’s belief in miracles was linked to preferences for care of their loved one.

“As a palliative care doctor, I see many family members with strong religious beliefs who want aggressive measures for their loved one and others with strong religiosity or spirituality who are comfortable accepting that their loved one is going to die,” Dr. Torke said. “The surrogate might say something like, ‘She’ll go to heaven,’ or ‘She’ll be with God.’ So I wasn’t surprised that our study found a lack of association of most aspects of religiosity and spirituality with end-of-life decisions, but I was surprised at how dramatically belief in miracles stood out.”

The Association of Surrogate Decision Makers’ Religious and Spiritual Beliefs with End of Life Decisions” was published online ahead of print in the peer-reviewed Journal of Pain and Symptom Management.

In addition to her Regenstrief roles, Dr. Torke is associate professor of medicine and associate chief of the Division of General Internal Medicine and Geriatrics at IU School of Medicine.

Co-authors are George Fitchett, DMin, PhD, Department of Religion, Health and Human Values, College of Health Sciences, Rush University Medical Center; Regenstrief Institute Affiliated Scientist Saneta Maiko, PhD of IU Health and the Indiana Conference of the United Methodist Church; Emily Burke, BA, Regenstrief Institute; Beth Newton Watson, MDiv, Association for Clinical Pastoral Education; James E. Slaven, M.S. and Patrick Monahan, PhD of IU School of Medicine.

The study was funded by the Research in Palliative and End-of Life Communication and Training (RESPECT) Center, IUPUI and the National Institute on Aging (grant number 1K24AG053794). The content of the study is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

About Regenstrief Institute

Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. The Regenstrief Institute and its researchers are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating of models of care that inform practice and improve the lives of patients around the globe.

A key research partner to Indiana University, Regenstrief Institute is celebrating 50 years of healthcare innovation. Sam Regenstrief, a successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.

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