Patients in critical condition are often incapable of making their own health care decisions. Instead, a family member or someone else may have to decide end-of-life care on the patient’s behalf.
Ronald Hickman Jr., assistant professor of nursing at the Frances Payne Bolton School of Nursing at Case Western Reserve University, will use a $350,000 Robert Wood Johnson Foundation Nurse Faculty Scholars award to investigate how to best help family decision-makers when considering life-sustaining treatments for their loved ones.
Family decision-makers report being stressed and carrying a substantial psychological burden. As a consequence, they might be underprepared, have poor comprehension of information and end up making decisions that do not align with the patient’s or family’s wishes related to life-sustaining care, Hickman explained.
“Having a loved one in the intensive care unit (ICU) can trigger a psychological crisis, and family decision-makers are unable to actively participate in making an informed decision about care for their loved one,” he said.
Overwhelmed family decision-makers tend to continue life-sustaining care without a clear understanding of the medical alternatives and consequences, Hickman said.
Without effective methods to address the psychological, cognitive and behavioral needs of the family decision-makers, decision quality is poor, resulting in depression, anxiety and posttraumatic stress disorder (PTSD).
“Right now, there are few evidence-based interventions to support family decision-makers, and this is an important unmet need,” he said.
Hickman plans to interview 200 people who made medical decisions for a family member in the ICU. He will evaluate how their emotions, personality traits and behaviors influenced their ability to process information and make a health-care decision for an ICU patient.
The researcher will also swab the mouths of the family decision-makers to examine DNA for the brain neurotropic factor (BDNF) rs6265 (val66met) polymorphism, a genetic indicator associated with a person’s susceptibility for impaired emotion regulation, which is likely to result in symptoms of depression, anxiety, and PTSD.
By using the DNA information related to psychological and behavioral indicators, Hickman said, new interventions can specifically target ways to help families cope with the stress of the decision-making process, improve decision quality and minimize consequences, such as depression and PTSD.
“As a growing number of Americans find themselves in the family decision-maker role for someone unable to make their own health-care decisions, the findings hold potential to make a significant contribution to nursing and the science of decision-making,” Hickman said.
Nurses and other health-care providers, many times, do not know how to best support family decision-makers. Having an evidence-based intervention will not only help clinicians support the needs of the family decision-maker, but aid in delivering care to ICU patients that is consistent with their wishes, he said.