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Photo by Paul Felberbauer
With optimism, you look upon the sunny side of things. People say, ‘Studs, you’re an optimist.’ I never said I was an optimist. I have hope because what’s the alternative to hope? Despair? If you have despair, you might as well put your head in the oven. — Studs Terkel
The voice on the phone was uncharacteristic without the lilt, the sudden laugh, the optimism usually expressed. Who among us would be cheerful or express anything but a somber sense of helplessness when the “C” word is used in our diagnosis?
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Clinical trials, some are told, may give back a future, sustain lives, and allow dreaming of another tomorrow. But the researchers leading the trials are as blind as we and make those statements either in good faith or to advance their careers. We want to believe it’s good faith, and, in that spirit, we agree to put our bodies through whatever it takes to defeat the monster.
Image: ©P. A. Farrell
Another Clinical Trial
I’ve been through this before; once with my mother, then one sister and now this woman. The trials all proved to be futile and my hope is that, although lives weren’t saved, something useful was learned and medicine advanced.
The woman’s voice this time reminded me of the poem by Robert Frost that reads:
The woods are lovely dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
She has already gone “miles” with three breast surgeries for breast cancer and reconstruction, brain surgery (she has glioblastoma) and now a possible surgery for pancreatic cancer. “They told me it’s a big operation and I’d need six months to recuperate,” she said. Will she have six months to live? I didn’t ask.
The monster, despite all the efforts to contain it, had spread and tossed its seeds to other organs in her body.
All the while, she maintained her optimism, except for now. The darkness of these woods was foretelling something to which she had become resigned; the long sleep.
The clinical trial didn’t work and the wrenching side effects of the medications may have been for naught. What to do? She still maintained her optimism that her doctors could “give me four more years” as they had said might be the case.
Now her optimism isn’t as great, but she has said, “I’m ready for death. I’ve made my peace with it and I’m ready. I don’t want to take the study medication anymore; it makes me too sick.”
Healthcare Professionals Feel the Pain, Too
The assumption is that anyone in the healthcare professions has developed some sort of psychic thick skin to protect them from the pain and death they see daily. It’s not so. I have felt it with every dying patient I ever saw and I was fortunate because I saw so few.
And burnout is becoming more of a hurdle for healthcare with each passing day as the pandemic rages across the world, taking lives with it. Some of the lives it will take are physicians, nurses and even ancillary personnel, I’m sure. Some by virus, some by suicide.
A colleague with whom I worked many years ago, was a nurse in a children’s hospital where most of the kids had a slim chance of surviving. I never understood how she and the staff managed to help those children ward off the fear of dying or of their illness.
She only spoke in glowing terms of how they had parties for the kids, made costumes and cakes and sang songs. Beyond anything I could have done for years. Yes, she did leave and went to work as the chair in a college nursing program. Perhaps that’s a way to handle burnout, too.
What happens when a patient burns out? Or is that being attributed to depression or the medication? Those who work with patients in hospice must see it and I’m sure they go home at night and try to believe they helped that day.
Believing you’ve helped has to be one way to assuage the questions that whirl in our heads: Did I do enough? Was I good enough? Did I help? How can I help tomorrow?
The clinical trials will continue because they must, but not all of them will have that magic we want; a cure. However, we live in hope and we try to give that to our patients, too.
