End-of-Life Decisions: What You Say and When You Say It Matter

Decisions about medical treatments towards the end of life are often difficult.

Patients may be in pain as they and their family members struggle to understand options and come to agreement. Poor decisions may unintentionally reduce quality of life for very ill people.

Kristen Pecanac

As an ICU nurse and researcher, Kristen Pecanac, PhD, RN is familiar with these challenges. She studies how conversations between healthcare professionals, patients and their families shape treatment decision-making, in order to improve that process. (See our article on “What We Talk about When We Talk about Surgery.”)

The need is considerable.

“Before their death, 40 percent of older adults need to make decisions about limiting or stopping treatment,” says Pecanac, a new assistant professor at the University of Wisconsin–Madison School of Nursing.

“The tricky thing is how you measure communication being good or bad,” Pecanac says. “What does the best communication look like? Improving communication is a lot harder than getting physicians to prescribe this pill more or switch to that kind of procedure. It depends on the interaction between the healthcare provider and the patient and their relationship.”

By looking at what is said during conversations about the use of life-sustaining treatment in the ICU, including the order in which information and perspectives are introduced, Pecanac has identified positive patterns.

“It’s better for the healthcare provider to ask the patient and family to share their perspectives before discussing treatment options,” says Pecanac. “If the provider starts talking about treatment options first, then the conversation tends to focus on treatment details and the patient’s and family’s lack of medical knowledge.”

More helpful conversations about end-of-life medical decisions start with the patient’s and family’s perspectives, using questions to draw them out. Healthcare professionals might ask if they’ve discussed particular treatments, potential complications or what’s important to their quality of life generally. It can help to ask about previous medical experiences as well as the patient’s personality.

“I think more people have these kinds of conversations than we assume,” says Pecanac. “Physicians will sometimes ask if the patient and family have talked about end-of-life issues and they’ll say no. Then the physician will probe and ask if they have older relatives who have gone through something similar and they’ll say, oh yeah, we had this situation. Giving people more context and asking about their informal discussions, values, life decisions—that’s all really helpful.”

This approach allows healthcare professionals to use what they’ve learned about the patient’s and family’s perspectives to suggest a course of action. Further discussion of that proposal can help patients and family members make their decision.

Pecanac is now focusing on medical decision-making by and for people living with dementia, a growing population.

“By 2050, more than 40 percent of older adult deaths will be among people with dementia,” explains Pecanac. “Currently, more than 90 percent of hospital patients with end-stage dementia suffer before their death.”

Pecanac will use a similar research approach, adding in consideration of the surrogate decision-maker, often a family member of and caregiver for the person living with dementia. She hopes to be able to address family caregiver stress and conflict while improving medical decision-making and advance care planning for people living with dementia.

–Diane Farsetta