Exploring the perspectives of early-stage postoperative glioblastoma patients and their caregivers on end-of-life care planning: An exploratory qualitative interview study.

Abstract

Aim: Compare the convergent and divergent viewpoints of early-stage postoperative patients with glioblastoma and their caregivers on end-of-life care planning in Taiwan.

Background: Decision-making capacity in patients with glioblastoma may be compromised as disease progresses, making early future care planning essential to ensure that the provided care aligns with patients' goals. However, within many Asian cultures, the tendency to avoid discussions about death can lead patients to feel hesitant about addressing end-of-life care options. This reluctance may impact the quality of care provided and increase the surrogate decision-making burden on caregivers.

Methods: An exploratory qualitative study with semi-structured qualitative interviews was conducted on early-stage postoperative glioblastoma-caregiver dyads at a medical center in Northern Taiwan informed by social constructivism. Thematic analysis with analytical rigor enhanced by dual coders and exploration of convergent and divergent views.

Results: We interviewed 7 patient-caregiver dyads (n = 14). More than half of patients were male (median age: 62 y/o). Primary Caregivers were primarily their spouses (median age: 47 y/o). Convergent viewpoints include death-prolonging treatment refusal, end-of-life fulfillment, timing of end-of-life care discussions, end-of-life concerns, and advance end-of-life care arrangement. Divergent viewpoints include life value (quality vs. quantity), lack transparent and shared discussions (explicit vs. implicit), and decision-making paradigm (individualistic vs. collective).

Conclusions: Early end-of-life care discussions for patients with glioblastoma are crucial to address differing values and cultural emphasis on family harmony. Transparent communication reduces caregiver stress and supports informed decisions on advance care planning, symptom management, and financial or social support.