Study shows significant opportunities to reduce suffering are potentially being missed
Only 20 percent of patients being treated in the hospital for severe stroke received a palliative care consultation, and only 43 percent of patients who died in the hospital met with a palliative care team, according to a new study from Regenstrief Institute and Indiana University. Study authors believe more people should be receiving these consultations that outline care options, clarify care preferences and potentially reduce prolonged suffering.
“Stroke is a major life crisis where patients and their families need to make major decisions, and they need significant support. Palliative care teams provide that,” said senior study author Alexia Torke, M.D., M.S., Regenstrief research scientist and professor of medicine at Indiana University School of Medicine. “When a person has a very severe stroke, they may not recover the ability to eat or breathe on their own. The palliative care team can help families and patients determine what they view as an acceptable outcome and how aggressive they want to be with treatment to reach that outcome. Sometimes, the patient and family may choose to receive comfort care rather than a feeding tube or ventilator.”
Palliative care teams communicate treatment options for patients and their families, explaining the best, worst and most likely outcomes for each. Care focused on comfort rather than life-prolonging measures is included in these discussions. They guide patients and families in defining values, preferences and goals for treatment, supporting them in making the appropriate decision to achieve an outcome that is acceptable to the patient.
The research team looked at the health records of more than 1,200 stroke patients in four health systems in Indiana to determine how many patients received the consultations. Older and sicker patients were the most likely to meet with the palliative care teams. And patients who received the consultation were more likely to move to a plan focused on comfort measures.
“We found that palliative care is being used appropriately, however, there are some missed opportunities,” said first author Amber Comer, PhD, J.D., associate professor in the IU School of Health and Human Sciences. “For example, more than half of the stroke patients who died in the hospital did not meet with the palliative care team. Some of these patients may have received more treatment than they preferred because they did not receive support and guidance in defining preferences and goals.”
The next focus of research in this area is to look at the goals of these palliative care conversations. Research scientists are also working to create a palliative care screening tool to help clinicians determine which patients are good candidates for palliative care consultations.
“Palliative and End-of-Life Care After Severe Stroke” is published online in the Journal of Pain and Symptom Management. This research received a grant from the National Palliative Care Research Center.
In addition to Drs. Comer and Torke, authors on the paper are Linda Williams, M.D., Regenstrief Institute, VA Health Services Research and Development Center for Health Information and Communication, IU School of Medicine; Stephanie Bartlett, P.T., IU School of Health and Human Sciences; Claire J. Cruetzfeldt, M.D., University of Washington; James E. Slaven, M.S., IU School of Medicine and Robert Holloway, M.D., MPH, University of Rochester School of Medicine.
About Alexia Torke, M.D., M.S.
In addition to her Regenstrief appointment, Alexia Torke, M.D., M.S., is the inaugural chief of the Section of Palliative Medicine within the Division of Internal Medicine and Geriatrics and a professor of medicine 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.
About Amber Comer, PhD, J.D.
Amber Comer, PhD, J.D., is an associate professor in the Department of Health Sciences within the IU School of Health and Human Sciences. She is a Regenstrief affiliated scientist and faculty in both the IU School of Medicine Center for Bioethics and the IU RESPECT Center.
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.
Sam Regenstrief, a nationally 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.
About IU School of Medicine
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.
About IU School of Health and Human Sciences at IUPUI
The School of Health and Human Sciences advances healthcare, kinesiology, sport, and event tourism through education, research, and community engagement.