Reading: Approaching Death On Your Own Terms: On Choosing an End of Life Path

“Science is the acceptance of what works and the rejection of what does not. That needs more courage than we might think.”                                                                                           

Jacob Bronowski    

There’s nothing theoretical about death when it decides to get up close and personal with my family. When my parents, my son, and two close friends each died, new grief has been dominated by sadness, anger at disease, and regrets. This time, though, our family has been gifted a new lens through which to look at science and death. And, while there’s no shortage of sadness, I’m also incredibly grateful for a new model of courage I’ve seen.

John, my husband’s brother, struggled with late-stage colon cancer for four years. He and my husband, Alan, have always been close. John was older by just 18 months. There’s a younger, third brother, too, and there was no slack in the ties between the three. My mother-in-law had eight miscarriages to have her three sons; this is a family that values family.

After undergoing surgery and multiple rounds of different chemotherapies, John made a decision from which he never wavered. He stopped the treatments that were destroying his ability to enjoy his remaining life and made plans to use the California End of Life Option Act when his suffering became too great. The choice required having his oncologist and two unaffiliated physicians examine him physically and mentally. They had to certify that this was not a decision born of depression or mental illness, but rather a reasoned, well-considered adult decision in light of a terminal illness that gave him a prognosis of under six months to live, and that that John was fully cognizant of all other options and met all the legal criteria. 

John also established and shared a set of personal criteria he would use to choose when to die: that he would “no longer be able to enjoy my life, becoming bedridden, unable to control my bowels, living in pain.” He registered with hospice as required — a representative would have to come to sign the death certificate — and completed the many legal requirements, maybe 18 months before he met his criteria. But then he was truly happy to live longer than expected and took full advantage of the extra time. Trips with his beloved life partner, fishing from his boat, time with his children, brothers, grandchildren. He’d graduated from Stanford University and attending their football games had become a near obsession since he retired. He relished that, too, and enjoyed two more seasons.

John’s condition worsened roughly two weeks before Thanksgiving, but he was trying to hang on because his partner — likely exhausted from the emotional strain and physical toll — had fallen asleep at the wheel the previous month and hit a parked car, totaling her car and the other one. No one else was involved or hurt, but an airbag that didn’t deploy caused her to break her sternum and three ribs. There was nothing in her system, not even any prescription drugs. Still, California automatically revoked her driver’s license, making her temporarily dependent on others and somewhat disabled by pain right when John’s pain and other symptoms were increasing with alarming speed. Alan went out for ten days to help in early November, but finally came home because John wanted to take care of her as long as he could. The earliest court hearing to appeal the license revocation she was able to get was on January 2.

Two days before Thanksgiving, John’s condition further deteriorated suddenly and seriously. He called each immediate family member. Alan and his younger brother immediately made reservations to fly from Ohio and Florida, as did John’s married daughter in New Hampshire. All made it to John’s house by Wednesday late afternoon, the 13-hour trip no simple feat for those across the country in the happiest of times, with a three-hour time change added on, too. John’s married son headed north from Sacramento. Of course, John’s partner was already there, now managing his care with her steady love, everyone grateful for that and for her.

They all shared a beautiful last dinner and evening together at John’s condo the night before Thanksgiving, passing wine and/or scotch as they told stories, laughing and in turns getting emotional, but no one giving way to a meltdown. There was the same loving interaction at breakfast on Thanksgiving morning. Then, with dignity, courage, and grace, at the exact time he’d chosen, nine o’clock, John, now in a wheelchair, calmly took the first dose, a powerful antinausea medication. Then the family had their last good hour together, still talking, still connecting.

An hour later, John said, “It’s time.” 

The family wheeled him into his bedroom, all holding his hands or touching him, saying how much they loved him, expressing gratitude for his life and gifts to them, before unassisted and without flinching, he drank the glass of fatal medication as prescribed under CA law (sharply bitter tasting and hard to get down, he’d been warned, and the reason for the advance antinausea pill). He lay back, closed his eyes, opened them twice momentarily to look at his life partner, closed them for the last time, and then appeared to be in a coma. His breathing slowed and became somewhat labored, but there was no sign of any struggle or suffering at all — everyone agrees. It was so much like life on a gentle slide into death that they weren’t even sure when John took his last breath. It was that seamless, that merciful.

His daughter called the hospice person to come and pronounce; John’s family sat with his body until he came, within an hour, to sign the death certificate and call the funeral home to come take John’s body for cremation.

Later that day, the family got themselves together and cooked a Thanksgiving dinner to share in John’s memory, his honor, and in gratitude for what he’d given them.

I share this story not for its inevitable sadness, but because each act was profound and meaningful. John wanted to preserve his autonomy, and he did so with unwavering courage, dignity, and grace. He had the choice. No one asked him to make that choice; it was his alone. Once made, everyone who loved him supported him without hesitation, accepting his last gift to his family. John not only spared himself the suffering of a prolonged and agonizing death, he protected his beloved partner, children, brothers, and extended family from enduring that pain.

Not everyone could or would make that difficult choice. I understand that. Nor is it appropriate for everyone. But I believe it should be a choice available for anyone whose diagnosed terminal circumstances make them eligible if they meet legal criteria and want the choice. However, currently only 13 states have Right To Die laws in place. 

Science has provided what once seemed like miracles in so many fields, medicine prominent among them. Physicians have the skill and means to prolong life as well as save it; possibilities of remission are developed and refined all the time. Some of those means also involve reduced time for active living and enjoyment for years — and sometimes, as we all know — ultimately prolong suffering during a long diminishment. 

 John made a different decision for himself. One that allowed him to remain in control of his life — and his impending death. No one influenced him; John was an independent thinker. But no one objected or got in his way, not his family or close friends. And not the government. Because he lived in the right place at the right time, and science had given him a way to live and then to die on his own terms. And the choice was legally available. He made that choice, and it was pure mercy. 

Social issues are thematic concerns of many of Lynne Hugo’s ten novels. The Language of Kin deals with the ethical issues within a fictional zoo as well the limits and possibilities of human communication.