Decisions made for incapacitated patients often not what families want

INDIANAPOLIS – Researchers from Regenstrief Institute and Indiana University report that nearly half of the time medical treatments and orders received for incapacitated patients were not compatible with goals of care requested by their surrogate decision makers. The most common disagreement involved a “full-code” medical order prepared for patients whose surrogates had indicated preference for less aggressive care options.

“The significant lack of agreement that we found between the surrogate’s wishes on behalf of an incapacitated patient and the care that is actually being provided is concerning and that concern is heightened during the pandemic, as many COVID-19 patients cannot make decisions for themselves because they are on ventilators and sedated,” said Regenstrief Institute Research Scientist Alexia Torke, M.D., associate professor of medicine at IU School of Medicine and the senior author of the new study which is published on JAMA Network Open. “Family members and other surrogate decision makers can’t visit patients during the pandemic, which also means they can’t gather information and feedback from the nurses, doctors and other clinicians, making two-way communication with the care team more difficult than ever.”

In the study, which was carried out at three hospitals, surrogates of patients age 65 and older were asked to classify treatment they wished the patient to have into one of three categories – comfort care (focused primarily on relief of pain and suffering), intermediate care (routine hospital care such as oxygen and intravenous medications) or aggressive care (“full code” including cardio-pulmonary resuscitation, ventilator and other therapies available in an ICU). The surrogate’s preferred goal of care was compared with electronic medical record (EMR) data outlining treatment received and medical orders written during the patient’s hospitalization. The surrogate’s preferred goal of care did not agree with the EMR data 47 percent of the time.

“How can we decrease discordance between what the surrogate wants and what actually happens in the hospital? We need to start at the beginning, before the patient loses capacity to engage in advance care planning, thus ensuring the patient and surrogate are on the same page,” said Dr. Torke, who has conducted several previous studies on surrogate decision making. “Then good communication – preferably face to face – between the surrogate and clinicians during hospitalization is important to ensure the patient receives the care they and the surrogate desire.

“This is not TV or the movies – only one in eight critically ill patients will survive CPR. Difficult decisions have to be made and they can best be made when the surrogate knows the patient’s wishes and has successful two-way communication with the care team,” she observed.

The researchers found that patients who resided in a nursing home were more likely to receive medical care that agreed with the surrogate’s stated goals of care than individuals who were admitted to the hospital directly from their own home. Individuals who lived with their surrogates or saw them at least weekly were more likely to receive the care that the surrogate requested than patients who had less contact with the surrogate.

“No matter how well you think you know someone, there is no substitute for having a conversation about his or her end-of-life wishes,” said study co-author Amber R. Comer, PhD, J.D., of IU School of Health and Human Sciences at IUPUI, the study’s corresponding author. “These conversations are crucial for ensuring that loved one receives medical treatments that he or she would have wanted. These conversations help alleviate some of the stress that surrogates experience when trying to make these difficult life and death decisions.” Dr. Comer is a Regenstrief Institute affiliated scientist.

###

Authors of the JAMA Open Network study, “Assessment of Discordance Between Surrogate Care Goals and Medical Treatment Provided to Older Adults With Serious Illness,” in addition to Drs. Torke and Comer, are Regenstrief Institute Research Scientists Susan Hickman, PhD, and Greg Sachs, M.D.; James Slaven, M.S.; Patrick Monahan, PhD, of IU School of Medicine; Lucia Wocial, PhD, R.N., of IU Health and Emily Burke, B.A. of Regenstrief Institute. Dr. Hickman directs the IU Center for Aging Research at Regenstrief Institute and is on the faculty of IU School of Nursing. Dr. Sachs is chief of the Division of General Internal Medicine and Geriatrics at IU School of Medicine.

This study was supported by the Greenwall Foundation and grants R01 AG044408 and K24 AG053794 from the National Institutes of Health’s National Institute on Aging.

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. A key research partner to Indiana University, Regenstrief and its research scientists 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 models of care that inform practice and improve the lives of patients around the globe.

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.

IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.

The School of Health & Human Sciences advances healthcare, kinesiology, sport, and event tourism through education, research, and community engagement.

About Alexia Torke, M.D, M.S.

In addition to her Regenstrief appointment, Alexia Torke, M.D., M.S., is an associate professor of medicine and associate chief of the Division of Internal Medicine and Geriatrics at Indiana University School of Medicine. She also directs the Daniel F. Evans Center for Spiritual and Religious Values in Healthcare at Indiana University Health.