Decision making in palliative radiation therapy: reframing hope in caregivers and patients with brain metastases

Abstract

Goals of work: To explore the major factors important in decision making for whole-brain radiotherapy (WBRT) for patients with brain metastases and their caregivers.

Patients and methods: Two parallel qualitative studies, one for patients and one for caregivers of patients with newly diagnosed brain metastases, were conducted. Semistructured interviews were conducted and audiotaped with each participant. Content analysis and theme extraction of the transcripts were undertaken to identify recurring themes and relational patterns.

Results: Twenty patients and 19 caregivers (including eight patient and caregiver pairs) were recruited into the study. Four major factors were identified to influence decision making of whole-brain radiation: hope, knowledge, expectations of radiation therapy, and current symptoms. Analysis reveals that patients generally focus on current informational needs, while caregivers want more information about the future (e.g., life expectancy and anticipated symptoms). Caregivers expressed frustration when unable to explore future needs because patients were unprepared to discuss prognostic issues. Participants expressed substantial relief when offered WBRT after the diagnosis, but WBRT is often considered the only available plan rather than an informed choice.

Conclusions: Given the importance of caregivers in the care of patients with brain metastases, fulfilling their unique informational needs appears to require more attention. The blurred boundary between hopes and expectations for WBRT creates unique challenges in joint treatment decision making for patients with brain metastases and their caregivers.