How Patients and Families Describe Major Medical Treatments: "They are No Longer Living, Just Existing"

Background: As more life-sustaining treatments become available, the need to provide patients and families clarity about what these treatments are and what they do is increasing. Little is known about how patients and families conceptualize life support.

Objective: To explore the discourse that patients and families used to describe major medical treatments in their accounts of treatment decision-making.

Methods: This study is a secondary data analysis of a survey sent to random addresses in Wisconsin regarding experiences with major medical treatment decision-making. This analysis includes the subsample of 366 respondents who specified the type of decision made in the survey's open-ended questions. Inductive content analysis was used to qualitatively analyze the responses to the open-ended questions, with particular attention to how respondents described the treatment in their responses.

Results: Respondents' descriptions showed a conceptualization of engaging in major medical treatments as keeping patients alive, whereas discontinuing or choosing not to engage in such treatments would bring about the patient's death. However, respondents recognized the potential adverse consequences of engaging in major medical treatments, such as their capacity to cause pain or result in an undesirable neurologic state. Additionally, respondents described the limitations of such treatment regarding the uncertainty of the treatments providing the desired outcome or their uselessness in situations in which the patient's death would be inevitable.

Conclusion: Understanding how patients and families make sense of major medical treatments can help clinicians during decision-making conversations.