IUPUI researchers receive grant to design real-world advance care planning program with nursing homes

The National Institute on Aging has awarded two researchers at IUPUI a $400,000 grant to work with nursing homes to design a real-world program to provide systematic, high-quality advance care planning for nursing home patients with Alzheimer's disease and related dementias.

The initial grant will be followed by a $3 million second phase of funding if the pilot testing is successful.

The multistate project involving about 200 nursing homes aims to integrate advance care planning into the day-to-day workflow of a nursing home. It will provide staff with the tools and knowledge necessary to support decision-making for nursing home patients with dementia and their families.

The project's goal is to develop and evaluate the program in the clinical setting, rather than through a tightly controlled research trial, said Susan Hickman, an Indiana University School of Nursing professor and co-director of the IUPUI Research in Palliative and End-of-Life Communication and Training, or RESPECT, Signature Center. "We are excited to work with our nursing home partners to create something that fits well within the existing nursing home culture."

Once the program is developed, a second phase of funding will support the evaluation of the intervention. The nursing homes will implement the program as a new clinical program, with the researchers evaluating how the program affects important outcomes like hospitalization rates.

"Our intent is to support nursing homes in providing care through a pragmatic program that helps staff identify the goals and values of patients with dementia and their family members. This will give patients the opportunity to plan in a way that allows for more-seamless care," Hickman said.

The project is co-led by Hickman and Dr. Kathleen Unroe, an IU Center for Aging Research scientist, Regenstrief Institute investigator and IU School of Medicine associate professor of medicine.

Advance care planning is an ongoing process in which patients, their families and their health care providers reflect on the patient's goals, values and beliefs to support decision-making about current and future medical care. It includes identifying preferences for treatment such as whether a nursing home resident prefers to be transferred to the hospital, be admitted to an intensive care unit or be given a feeding tube.

"It's not one-size-fits-all," Unroe said. "There are choices and values that should play into these decisions."

The need for advance care planning is particularly apparent in nursing home settings where a majority of people have cognitive impairment, Unroe said. "Research has shown that families often prefer care focused on comfort, but the default is aggressive medical treatment that may not be consistent with a patient's preference. Yet too often, we fail to ask what people want."

The new program will serve all residents in the nursing homes but will focus on those with Alzheimer's or related dementia, who represent a majority of long-stay nursing home residents.