Advance care planning and unmet needs of malignant brain tumor patients and their caregivers.

Abstract

Abstract Purpose: When the treatment of malignant brain tumors (MBTs) becomes difficult, patients transition to palliative and/or end-of-life (EOL) care. Advance care planning (ACP) is a process of discussing overall care goals and specific/medical treatments with patients and their families, in preparation for a future decline in decision-making ability. However, patients with MBT often experience a decline in their decision-making ability that renders ACP intervention challenging. Here, we clarified the level of awareness of ACP and caregivers’ burden to provide better EOL care for patients with malignant brain tumors. Methods: We conducted an inquiry using a questionnaire focused on ACP and palliative/EOL care from relatives of patients deceased due to MBTs to gauge their unmet needs. Results: Among the 18 patients, the questionnaires were successfully completed by the relatives of 11 deceased patients. While only one caregiver was aware of ACP, five had engaged in discussions about the disease and EOL considerations prior to its onset. Among these, four expressed a willingness to share their burdens with caregivers of individuals affected by MBTs, and five indicated a potential need for comprehensive consultation with other specialists. Conclusion:Since the awareness of ACP was low, it is important to discuss it with the patient's caregivers and participate in ACP on the patient's behalf.