Like most people I meet interested in end-of-life care, my motivation to study this phase of life also stemmed from personal experience. In the summer of 2014, my aunt was diagnosed with glioblastoma multiforme, one of the deadliest brain tumors in adults. My grandfather had died recently from oral cancer, and my family refused to believe we would lose another battle with cancer. Months later, my aunt’s tumor type made national news. Brittany Maynard, a 29-year-old diagnosed with the same cancer, chose to end her life on her own terms. Following Maynard’s move to Oregon, she received a physician-prescribed lethal dose of medication. I struggled to wrap my mind around the dichotomy between Maynard’s situation and my aunt’s.
In the end, the surgeries, chemotherapy, radiation, and experimental drugs allowed my aunt to live for 14 more months than Brittany Maynard. Maynard died peacefully at home when she decided the cancer was too much. My aunt died at home when the cancer had made the decision for her. Soon after my aunt’s death, I read Atul Gawande’s Being Mortal and spent the rest of the summer reading it over and over again. It was as if everything I had been feeling about my aunt’s death had been transformed into a relatable, relevant narrative. My somewhat jarring experience with end-of-life care was not unique.
Looking back on it now, I realize that this was a turning point for me. I began volunteering at a local hospice, visiting an elderly woman with dementia, studying medical ethics, and taking my experiences and perspectives abroad. Dealing with and learning about death has made me wonder if there is a better way to die. I feel sure that someone out there has to have it figured out, or at least has it figured out more than I do. While my questions about end-of-life care may defy concrete answers, I hope by learning from other cultural approaches to dying, I might understand how to preserve quality of life, even at the very end.