A physician’s own end-of-life story

I’ve always believed that if I were diagnosed with a terminal illness and had a choice between a few months of quality living and a few extra months filled with doctors’ visits, surgeries, lab tests and drug treatments, I would choose quality of life.

Many friends, some of them doctors, have told me, “Oh, you think that now, but when the times comes the will to live is just too strong. You’ll do anything for that extra time.”

Would I? I guess I won’t know for sure until my time comes.

That’s exactly what a hospice physician thought—Will I or won’t I?—until that unfortunate day when his time did come.

“You don’t know the answer to that until you actually face it,” he said later — after his own diagnosis had been made, after he knew that he had cancer and that he would soon die. “You can say you do, but you don’t really know.”

Peter Rassmussen, MD, died in November. He is remembered as a compassionate physician and a passionate supporter of Oregon’s Death with Dignity law, which he helped pass in 1994.

His informative and moving story is told in the recent issue of Harper’s magazine: When I Die

(There is a paywall for the online version, but you can read one article for free.)

I’m including a few statements here that he or his family made, because they really resonate with me and my beliefs. To get a fuller picture of Dr. Rassmussen’s work, as well as the way in which he chose to spend his final months, read the entire article. It’s well worth the time.

From his earliest medical training, Dr. Rassmussen felt the health care system could do better.

Treating dying patients for the first time was a revelation: the medical field had not yet fully embraced hospice or palliative care, and offering support in death was seen as inimical to healing. “We could give them a shot of morphine for a few hours of comfort,” Rasmussen remembered. “Otherwise, we just sent them home to die. It was terrible the way we abandoned those patients.” Making dying easier felt like a meaningful way to help, so he decided to train as a medical oncologist: “Medical oncology was the closest to caring for dying patients, because so many of the patients die.” He became board certified in hospice care and palliative medicine. Unlike many of his colleagues, he kept seeing patients after it was clear that chemo would be of no further use. He thought of his job, at its heart, as helping people to die — just slower and better than they otherwise would have.

At the age of 68 he was diagnosed with a glioblastoma, a malignant brain tumor. As a cancer doctor, he knew exactly what he was up against.

He had considered whether having surgery violated his usual advice about not wasting one’s final months seeking painful and unlikely cures, but because his tumor was localized and fairly accessible, he and his surgeon decided that the odds were good enough to try.

Five months after the surgery, he stopped using the steroids and stopped the treatments. [radiation and chemo]

Whenever he started to feel sorry for himself, he’d administer a stern mental shake: “We all die,” he’d tell himself. “It’s never fair to anybody. So buck up.” He didn’t go to therapy. “I don’t think I need it,” he said. He knew he was in good shape, statistically speaking, with family and friends to lean on and no major financial stress accompanying his death.

He talked to his family about what he was willing to endure in order to stay alive. Some of his patients had loathed being bedbound, and considered it the ultimate indignity. Though he was pretty sure that with his stubborn independence he’d hate it, too, he felt that he’d be able to handle it. He’d still have access to books and lectures, to his friends and family, and as long as he wasn’t in a lot of physical pain, those things would be the barometers of his quality of life.

When he began to experience more frequent seizures, fatigue and difficulties with speech, he filled out the paperwork required for physician-assisted suicide under the Death with Dignity law.

“Personally,” he wrote, “I take comfort in knowing that when my glioblastoma produces symptoms that can’t be controlled by even the best hospice care, as an Oregonian I will retain the final human dignity of control over the circumstances of my death.”

Related post: Death with Dignity – “How to Die in Oregon”

His diagnosis was the same as the young woman Brittany Maynard, who also chose to end her life under the Oregon’s Death with Dignity law.

He visited with friends and family, watched a slide show of old pictures, listened as music therapists, brought in through his old hospice program, played his favorite songs on his favorite instrument, the ukulele. Cindy and the kids sang along just as they used to when he could still play….He ate small bites of food and sipped juice or water or beer.

After he took the secobarbital drink that would quickly and peacefully end his life, his wife

realized how similar the scene was to what he used to describe when he came home from someone else’s death. “It was awful,” she says. “But at the same time, I was glad that he was able to end his life on his terms.”

His wife also referred to those last few weeks as “one of the most meaningful experiences I’ve ever had and probably will ever have.”

If or when I am faced with such difficult decisions, I hope I will have the same ability to discern the difference between quality of life and length of life, and the same support from my health care providers, family and friends.

Sláinte,

Frugal Nurse

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