CWRU researchers receive $2.48 million federal grant to help families make end-of-life decisions

A new $2.48 million federal grant will allow researchers at Case Western Reserve University to revise and test the effectiveness of an interactive avatar-based technology that helps users make end-of-life decisions well in advance of an ICU emergency.

Each year, millions of Americans are admitted to an intensive care unit (ICU), which can trigger a cascade of difficult decisions about treatment and end-of-life care, especially for patients with chronic illnesses.

But more than half of ICU patients haven't documented their end-of-life preferences in any formal way, such as with a living will or medical power of attorney.

"What this does is put their loved ones in very uncomfortable positions," said Ronald Hickman Jr., PhD, an associate professor at Case Western Reserve's Frances Payne Bolton School of Nursing and an acute-care nurse practitioner. "It can be an intimidating situation, so people often default to clinicians and later regret doing so."

With the grant from the National Institute for Nursing Research at the National Institutes of Health, Hickman and his Case Western Reserve research colleagues hope to alleviate much of that stress and regret.

Hickman, working with Marc Buchner, an associate professor in electrical engineering and computer science at Case School of Engineering, will create a prototype software program that can be personalized to fit specific patient situations. The technology is called Interactive Virtual Decision Support for End of Life and Palliative Care (INVOLVE).

The prototype will be tested with 270 patients at University Hospitals Case Medical Center. Periodic surveys to gauge their sense of stress and regret will measure the software program's effectiveness, compared to providing information-only support and usual methods of care.

The chronically critically ill are at high risk for cognitive impairment, prolonged use of life-sustaining care and the need for a surrogate decision-maker, who often describe high psychological stress associated with a patient's condition and preferences.

Hickman's commitment to research that helps ease the emotional burden of end-of-life decisions and treatment is based on personal experience.

He previously worked as an ICU nurse, but says he really didn't understand the need for a new, perhaps more sensitive and more effective tool to make better-informed decisions until his grandparents were patients together in an ICU.

"Given my experience and training, I came into the situation with resources, yet I still found it very challenging," he said. "I can only imagine what it's like for most families."

Source: Case Western Reserve University