"It's My Wish, We Need This Program": Qualitative Reflections From People With High-Grade Brain Cancer Consenting to Postmortem Brain Donation.

Abstract

Brain tissue donated in the postmortem setting is a driving resource for brain cancer research and a source of hope in the face of dismal survival rates. As demand for tissue increases, the need to understand the impact of these programs on prospective donors becomes paramount. Little is known about the experience of consenting to rapid autopsy after a terminal brain cancer diagnosis, and clinical teams favor caution when approaching patients for consent for fear of causing distress. Characterizing the human experience of consenting to postmortem brain donation will provide an evidence base for compassionate integration of brain donation consent into clinical pathways. We interviewed 21 prospective donors who had expressed interest or had consented to postmortem brain donation. A thematic analysis with narrative synthesis was conducted on the transcripts of the qualitative interviews. Four themes were identified within the data: (1) Meaning, purpose, and donor expectations, (2) embracing the identity of a donor and integrating donation into personal narrative; (3) regaining control and defining legacy; and (4) the role of stoicism and humor in protecting emotional well-being and family relationships during donor discussions. The sentiments expressed in the data indicate an overwhelmingly positive impact associated with consenting to brain donation. Consenting to a postmortem brain donation program can instill a sense of purpose and meaning while restoring a sense of control for those facing mortality. These data indicate that the prevailing caution and reluctance in consenting a patient to brain donation may be misplaced, preventing patients and their families from engaging with a program that can provide an invaluable source of hope, empowerment, and legacy.