Helping doctors carry out their patients’ dying wishes

Zhara Rahemi, associate professor in the Clemson University School of Nursing, received a grant from the Alzheimer's Association to examine advance care planning (ACP) practices between patients, caregivers and physicians. She will assess patients' end-of-care directives, commonly called dying wishes, and develop strategies to improve physicians' ability to honor their patients' wishes.

Advance care planning comes in many forms - a living will, durable power of attorney for health care, discussions with family members and caregivers and more. ACP is important because it allows health care providers to plan for patients' end-of-life wishes - and for those developing Alzheimer's disease or other related dementias, this planning is vital, especially before the patient becomes too cognitively impaired to communicate.

Zahra Rahemi

"Adhering to end-of-care directives or advance care planning for cognitively impaired patients is vital to respecting their wishes and values so their dignity and autonomy can be preserved," Rahemi said. "For families, these directives offer clear guidance during stressful times and help reduce any potential conflicts between family opinions."

An advance directive is legally recognized but not legally binding, according to the National Institute of Aging. This means the health care provider and proxy will do their best to respect advance directives, but there may be circumstances in which they cannot follow the patient's wishes exactly.

Advance care planning and end-of-care directives differ for each patient. With chronic diseases like Alzheimer's, some patients focus on personal comfort rather than life-saving measures. In the later stages of Alzheimer's disease, people may have trouble swallowing, which can bring food or liquid into the lungs and cause pneumonia. In this case, doctors may recommend a feeding tube for nutrition, a ventilator to help with breathing and antibiotics to fight lung infections and help with recovery, but some patients may not want to choose this course of treatment. ACP allows patients to express their wishes related to personal comfort and care.

However, not everyone has an advance care plan in place, and patients often experience barriers to planning such as lack of knowledge, cultural beliefs and distrust of the health care system. As part of her research, Rahemi will more specifically identify the factors that prevent people from making advance care plans. Through AI-driven methods, Rahemi hopes to design strategies that can enhance ACP adherence and, ultimately, reduce end-of-life health disparities among racially and ethnically diverse older adults.

Rahemi will work with researchers from University of Michigan, University of California San Francisco and University of South Carolina to conduct this study funded by the Alzheimer's Association.

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The School of Nursing is a part of the College of Behavioral, Social and Health Sciences. Established in July 2016, CBSHS is a 21st-century, land-grant college that combines work in nine disciplines - communication; nursing; parks, recreation and tourism management; political science; psychology; public health sciences; sociology, anthropology and criminal justice - to further its mission of "building people and communities" in South Carolina and beyond.

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