“Well, that explains it,” my father said. His clumsiness. His bad balance. His fumbling fingers on the keyboard resulting in typos. His difficulty walking with an even gait. His absent-mindedness. His inexplicable feeling of urgency about getting his affairs in order. His struggle to take a full stride without his left foot tripping him up. His ever-more-frequent falls which sent him to the ER more than once over the last few months.
He hadn’t quite felt like himself the last few months. “Maybe this is just aging?” we speculated. “Maybe it’s just a poor recovery from hip surgery last year?” Nope. All these mysteries were solved with a CT scan and then an MRI to investigate an abnormality spotted in the right frontal lobe of his brain. Glioblastoma multiforme – the most deadly and aggressive form of brain cancer.
When they gave us the diagnosis, a panel of doctors who reviewed his scans recommended that my dad forego treatment and enter hospice. The tumor was already very large and the available treatment would do more harm than good. “How long does he have without treatment?” I asked the doctor in a tremulous voice. “Two months, give or take,” he replied.
The diagnosis and prognosis were devastating. How could this happen to someone so healthy, fit, and strong, someone who for decades ran five miles a day, someone who doctors always marveled at because his biological age was so much younger than his chronological age? How could brain cancer, of all cancers, strike this brilliant and world-renowned philosopher of the mind? How could someone we all expected to live to 100, like his mother, die so much sooner than we all planned? We were stunned.
As my dad absorbed the news of his diagnosis, as he reflected on the doctor’s recommendations, he took an admirable view of his predicament. He didn’t take his illness personally. He didn’t ask “Why me?” He completely rejected the notion that this was in any way “unfair.”
Dad made the decision to enter hospice and told my sisters and me that he was not interested in longevity of life without quality of life.
On that very first day, Friday May 31st, we talked about California’s End of Life Option Act as one of the paths he could explore and pursue. As part of the hospice intake process a week later, he asked the hospice nurse for more information on the end-of-life option and she gave him the phone number for Kaiser’s End of Life Option Program.
I’d rarely seen my dad nervous, but it seemed to me he was nervous to place the first call. He wanted to get it right and say the things that would ensure he met the requirements to get the medication. He wanted to practice what he was going to say, eager to make a clear declaration of his desire to get the medication. When he did make the call on June 11th, he listened intently when the program coordinator described the steps he would go through to get the medication.
After making his first oral request for the medication to his prescribing physician on June 17th, the 15-day waiting period began. Those were an anxious few weeks in our household. There was so much uncertainty that surrounded how his disease would present and progress – how quickly it would advance and what functions it would rob him of. Would he lose the ability to swallow before the medication arrived? Would he be deemed mentally capable in the final appointment with the prescribing physician? Would he still be able to make the decision when the time came? A visit from a consulting physician provided a little comfort but anxiety was running high.
When he made it through all of his requirements, the day when the pharmacist and program coordinator arrived – July 10th – it was a day met with great anticipation. As he signed the last of the paperwork and received instructions from the pharmacist, his mood began to lighten. He expressed his gratitude to them and after they left, the relief was palpable. He handed my sister the medication. “It’s here,” he said. “It’s finally here.”
During the waiting period, my dad had been working on something. I first noticed it one day as he lay in bed. His lips were moving and he was speaking softly to himself. “What are you saying, Dad?” I asked him. “I’m working on the statement I’m going to make when I take the medication,” he explained. A few days later, he was ready to share. He spoke carefully and deliberately. “This is the statement I will make after I take the medication,” he paused. “I am taking this medication to avoid a manner of living that is unacceptable for a meaningful human life.”
His statement gave us a framework by which to measure his experience in his own language, based on his own values, which was enormously helpful. Over the weeks that followed, we used that statement as a guide, expressing curiosity and talking openly about where he was in relation to a “meaningful human life.” As he endured more effects of his illness, we asked him whether it was “unacceptable” yet. We were surprised that conditions we thought he would find unacceptable became acceptable. The finish line kept moving. When we asked him about this, he said that it was true. “In the past I would have thought this was unacceptable, but when non-existence is the only alternative…”
In one of our family discussions about how he would like to die, we presented our dad with a scenario. If he could just get weaker, sleep more and more, slip into a coma, and die, would he prefer to die that way or would he still want to take the medication? Yes, he said, he would prefer to die that way. But we couldn’t be guaranteed that death. He might lose the ability to speak, to eat, to drink, and most important of all to think. That’s why the presence of the medication gave him such comfort. He could die on his own terms and exercise power and control over his precious life at a time when he was losing power and control over everything. The train was coming down the tracks. We could all see it. We all knew it was coming. The medication gave him the power to remove himself from its path in his own time and on his own terms.
Ultimately, my dad got the death that he wanted. As his cancer progressed, he didn’t experience the pain, nausea, headaches or seizures often associated with brain cancer. He began to sleep more and more, he slipped into a coma and died on August 9th, just 10 weeks after his diagnosis.
Although he didn’t ultimately ingest the aid-in-dying medication, I believe now that it had the desired effect. The medication gave him peace of mind. It alleviated his anxiety about the pain and suffering he would be forced to endure without it. It freed him to reflect on his life and receive all the love that flooded his way. At the most agonizing time in all of our lives, the medication brought us all comfort.
My dad described the final months of his life as “a wonderful time despite the dismal circumstances.” He enjoyed food, wine and conversation until the final week of his life. His steady stream of visitors, phone calls, and emails served as a living memorial which helped him realize that what he hoped he had been doing with his life, he had in fact done. He died peacefully surrounded by family. So ended an incredible life. May we all be so lucky.