Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Feb 14;12(2):169-175.
doi: 10.1016/j.ijnss.2025.02.001. eCollection 2025 Mar.

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

Runa Tokunaga  1 , Fumiyo Ishikawa  2
Affiliations

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

Runa Tokunaga et al. Int J Nurs Sci. .

Abstract

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.

Keywords: Brain neoplasms; Cues; Family; Nurses; Proxy decision-making.

PubMed Disclaimer

Conflict of interest statement

The authors have declared no conflict of interest.

References

    1. Stupp R., Mason W.P., van den Bent M.J., Weller M., Fisher B., Taphoorn M.J.B., et al. Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med. 2005;352(10):987–996. doi: 10.1056/NEJMoa043330. - DOI - PubMed
    1. Sizoo E.M., Braam L., Postma T.J., Roeline W., Pasman H., Heimans J.J., Klein M., et al. Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol. 2010;12(11):1162–1166. doi: 10.1093/neuonc/nop045. - DOI - PMC - PubMed
    1. Wu A., Ruiz Colón G., Aslakson R., Pollom E., Patel C.B. Palliative care service utilization and advance care planning for adult glioblastoma patients: a systematic review. Cancers. 2021;13(12):2867. doi: 10.3390/cancers13122867. - DOI - PMC - PubMed
    1. Pace A., Koekkoek J.A.F., van den Bent M.J., Bulbeck H.J., Fleming J., Grant R., et al. Determining medical decision-making capacity in brain tumor patients: why and how? Neurooncol Pract. 2020;7(6):599–612. doi: 10.1093/nop/npaa040. - DOI - PMC - PubMed
    1. Sato S., Suzuki A., Harada N., Ishida T. In: Cancer nursing. M Asano, Okuno S., editors. Nankodo. 2019. Early detection of cancer (chapter 2) pp. 142–146.

LinkOut - more resources