Understanding how patients and families describe major medical treatments

When patients and their families face important decisions about major medical treatments, understanding how they describe them in their own words may help clinicians provide clarity and support through the decision-making process.

Researchers with University of Wisconsin–Madison School of Nursing analyzed the comments in open-ended responses from a survey about making decisions on major medical treatments to gain insight into the words used by decision-makers and how they conceptualize the various treatments. "How Patients and Families Describe Major Medical Treatments" is published in American Journal of Critical Care (AJCC).

The study is a secondary data analysis of a two-phase survey sent to random addresses in Wisconsin regarding experiences with making decisions on major medical treatments. The analysis includes a subsample of 366 respondents who specified the type of decision in the survey's open-ended questions.

Respondents' descriptions showed a conceptualization of engaging in major medical treatments as keeping patients alive, whereas choosing not to have such treatment or discontinuing it would lead to the patient's death. They also recognized the potential adverse consequences of the treatment, such as causing pain or an undesirable neurologic state. Their responses indicated an understanding of the limitations of such major medical treatments by describing the uncertainty of the outcome or the futility if a patient's death was inevitable.

Principal investigator and co-author Kristen Pecanac, PhD, RN, is an assistant professor at University of Wisconsin–Madison School of Nursing.

How respondents named major medical treatments, explained what they were doing and described the patient's condition demonstrated how they conceptualized the treatment's influence on the patient's life. We can learn so much by allowing patients and their families an opportunity to use their own words as they work through decisions about medical care."

Kristen Pecanac, PhD, RN, Assistant Professor, University of Wisconsin–Madison School of Nursing

In the comments, the term "life support" was commonly used, often as an all-encompassing term for multiple major medical treatments that are simultaneously sustaining life. The researchers suggest that it may be helpful for healthcare practitioners to describe the reason for individual treatments when different ones are being used concurrently, to more fully communicate the gravity of the situation.

Many respondents described an understanding that death was inevitable, regardless of major medical treatment. The comments demonstrate that major medical treatment at times has the capability to do something but is still limited by the inevitability of death.

An additional limitation of major medical treatment is the uncertainty of a positive outcome, which was especially apparent when the respondents discussed making decisions about surgery.

During the first phase of the study, a screener survey was mailed to 4,000 randomly selected Wisconsin addresses to identify adults who had made a decision about a major medical treatment for themselves or someone else, making them eligible to participate in the second phase. A follow-up survey was sent to the 1,072 people who responded, with 464 recipients completing it. A subsample of 366 respondents provided comments in the open-ended items of the follow-up survey that were included in this secondary analysis.

Open-ended items asked respondents about the most difficult decision they had to make regarding major medical treatment, the different options and the one they chose, and what they remembered about making the decision. They also had the opportunity to provide more information or additional comments.