The relationship between proxy decision-making content and cues by families of patients with malignant brain tumor: A descriptive qualitative study

Objectives

This study aimed to clarify the relationship between the content of proxy decision-making made by families of patients with malignant brain tumors regarding treatment policies and daily care and the cues leading to those decisions.

Methods

Semi-structured personal interviews were used to collect data. Seven family members of patients with malignant brain tumors were selected to participate in the study by purposive sampling method from June to August 2022 in the Patient Family Association of Japan. Responses were content analyzed to explore the relationship between the content of decisions regarding “treatment policies” and “daily care” and the cues influencing those decisions. Semi-structured interviews were analyzed by using thematic analysis.

Results

The contents of proxy decisions regarding “treatment policies” included implementation, interruption, and termination of initial treatments, free medical treatments, use of respirators, and end-of-life sedation and included six cues: treatment policies suggested by the primary physician, information and knowledge about the disease and treatment obtained by the family from limited resources, perceived life threat from symptom worsening, words and reactions from the patient regarding treatment, patient’s personality and way of life inferred from their treatment preferences, family’s thoughts and values hoping for better treatment for the patient. Decisions for “daily care” included meal content and methods, excretion, mobility, maintaining cleanliness, rehabilitation, continuation or resignation from work, treatment settings (outpatient or inpatient), and ways to spend time outside and included seven cues: words and thoughts from the patient about their way of life, patient’s reactions and life history inferred from their preferred way of living, things the patient can do to maintain daily life and roles, awareness of the increasing inability to do things in daily life, family’s underlying thoughts and values about how to spend the remaining time, approval from family members regarding the care setting, advice from medical professionals on living at home.

Conclusions

For “treatment policies,” guidelines from medical professionals were a key cue, while for “daily care,” the small signs from the patients in their daily lives served as cues for proxy decision-making. This may be due to the lack of information available to families and the limited time available for discussion with the patient. Families of patients with malignant brain tumors repeatedly use multiple cues to make proxy decision-making under high uncertainty. Therefore, nurses supporting proxy decision-making should assess the family’s situation and provide cues that facilitate informed and confident decisions.