It started, as far as I know, with a twinge. A back spasm in a healthy, but prone to back spasms, 68-year-old man, who soon was reduced to near tears in the parking lot of the Thai restaurant where we’d gone to get take out. It was early summer, and I was on a short visit to the east coast. My mother was the one to worry about. She had advanced breast cancer, “stage IV” as my dad frequently called it, in a way that he felt made it easier to convey to the world the seriousness of the situation but never allowed my mother a moment of peace to forget her mortality.
In those days, my dad thought only of the transience of her life, never his. He was a paragon of health, a man who had found running in his 30s and started a lifelong daily habit on the rural roads of Pennsylvania. Independent, he chopped his own wood and heated their home solely with it, scouring the landscape with a probing eye for downed trees, and driving his pickup and chainsaw to the site to claim the wood as if it was a treasure. He eschewed doctors, despite that I was one, and that his own background was one of science. As he used to say, if he didn’t outlive his own father, who died in his early 90s after a life of hard living, the world was unjust.
Over the next month, the spasms became more frequent. I, in California midway through my pediatric anesthesia fellowship and weary of years of long distance medical concerns from my mother’s prolonged illness, received weekly updates via phone call but was too wrapped up in my own life to put it together.
“I’m interviewing for jobs, Mom — finally the end of ten years of medical training!”
“Your father has lost that 30 pounds he always wanted to!”
“He’s hot all the time — I just bought new sheets so we can change them more frequently — they are damp every day.”
But the pain was what he was focused on. He finally went to a doctor, because of the severe pain that left him breathless and screaming on the floor.
Acute myelofibrosis was the final diagnosis. In a period of mere months, his bone marrow had turned to useless fiber. This is very rare, said the specialty Philadelphia teaching hospital where I finally brought him, desperate for answers. How long does he have? Maybe six months. The pain, though, no one could understand. It wracked him, left him screaming and shaking. As an anesthesiologist, I was accustomed to witnessing severe pain, then standing at my patient’s bedside pushing medicine until it resolved. Of his pain, I could do nothing other than to explain to physician after physician: “Until two months ago, he never even took Tylenol; he has an extremely high pain tolerance.” They shook their heads in disbelief: We don’t think this disorder causes pain. Yet it did. They treated his pain as best they could, but it was never enough.
Of death, he knew, but he didn’t know. A lifelong hunter who’d grown up on a farm, he was accustomed to the cycle of life and death, yet always colored by the element of the one with control. It is difficult to describe retrospectively the stages of disbelief, rage, and acceptance he went through. Before he came back from the hospital for what would be his final time, my husband and I cleared the house of his entire gun collection. We feared my father would do something desperate; throughout his life, he would say if he ever had a serious illness he would just take his hunting rifle and end it.
It seemed so wrong; society says suicide, giving up is wrong, and guns are violence. So, my husband and I acted. But now I understand this man was terrified that he had run out of options, that I had taken away what he saw as his only alternative.
“Why?” He moaned over the phone after I’d left, back safely in my fellowship in California. “I would have just gone in the woods and taken care of it. I’m scared.”
I started to understand.
“I’ll help you, Dad. But I need to help you in a way that is legal. I’ll take a leave from fellowship, and we’ll move to a state with physician-assisted suicide, and establish residency, and they’ll help you, Dad.”
But that was a pipe dream. The closest state was Vermont, at least an eight-hour drive with a man screaming in constant severe pain and a requirement to first establish residency. No, no, he said, I’ll find another way. My mother, perhaps because she was there and living with the consequences of his disease, or perhaps because the stigma of suicide ran strong in our small Pennsylvania community, focused on preventing his desired death.
In the end, he died in hospice care in a hospital on Thanksgiving day, in a morphine induced haze from which he would occasionally awaken and scream. Home was not an option; no hospice provider serviced IV opiate medication in our rural area of Pennsylvania. It was his worst nightmare come true: a diapered hell. On the day before he died, he had one moment of clarity, like when you awaken from a bad dream and are trying to figure out if it is real or not.
“Chrissy, am I OK?”
“Dad, I’m here.”
“No, I’m not OK! …” dissolved into the moans of severe pain, soon followed by the delirium of more morphine.
I am haunted by the end of my father’s life, by the lack of control he felt, by his terror, and by the role I was forced into. I witnessed what I knew to be his worst fear, for someone as independent as he: “I never want to die in my own filth in a hospital somewhere.” Yet there was no option. I had taken away the only other real option for someone as incapacitated as he, to die by his own hand with a gun in his beloved woods.
Yet why, in his home state, did society dictate my dad had but two, equally inhumane and unacceptable options? Why was a physician-assisted dignified death, with a semblance of choice and control in a situation that was otherwise so helpless, not available to my father?
Physician-assisted suicide is currently available to terminally ill patients in four states. Nothing can change the death of my father. But especially as a physician, I owe it to him to argue for death with dignity, to advocate for patients to have the option he did not have, so other daughters do not have to feel the conflicted helplessness I can’t forget.
Christine Jette is a pediatric anesthesiologist.
Image credit: Shutterstock.com