What a nurse learned from a patient who wasn’t afraid to die

I donated blood today. I’m one of those people who doesn’t shudder at the thought of needles piercing my skin, or get queasy as I watch the blood drain from my vein into the collection bag. It’s no big deal. I eat the cookies and drink the juice afterward, and I kind of enjoy talking with the elderly volunteers.

I think I’m lucky. I know so many people who are sickened by the sight of blood, afraid of needles and terrified at the thought of pain.

Several years ago, a nurse practitioner friend convinced me to volunteer a few hours a week at a free dental clinic. I took health histories and blood pressures. By the time people came to us, their teeth were generally beyond saving. Their mouths were infected, their gums were inflamed, and they often had other conditions, such as diabetes and heart disease. But still they’d put off coming to the clinic as long as possible, because they were afraid it would hurt.

They weren’t wrong — but I always thought the pain was a small price to pay. If they could only tolerate the procedures, they would leave with a set of dentures that would allow them to eat again, to smile without feeling self-conscious, to be free of infection.

But fear can make you myopic. It’s hard to see a distant outcome, no matter how sunny, when you’re blinded by fear.

When my friend Sally’s husband, Ed, got sick, she made every effort to make him well. She made him smoothies to build him up against the cancer that was ravaging his body. She stayed by his side; tried to remain in his sight. Even during his last days, as he drifted into and out of consciousness, he was aware of her presence and agitated by her absence. Sally did everything in her power to care for him.

But some things were not in her power — including pretty much anything medical. She had a strong fear of medical procedures and required assistance with tasks I considered mundane. For example, she couldn’t bring herself to place the transdermal pain patches on Ed’s back.

“It’s just like a Band-Aid,” I would tell her. But she just couldn’t do it.

Three months after Ed died, I was having lunch with Sally and her daughter. Sally told me that her leg was giving her trouble, and that her daughter was taking her to the urgent care center that afternoon. She commented on the size of the hamburgers we were served — the smaller, quarter pound versions with no sides. “I don’t know how people can eat such huge portions.”

At the urgent care center, they found a deep vein thrombosis in Sally’s leg. Since they could find no obvious risk factors in her health history, they sent Sally for a CT scan. She was full of clots. Soon after, she was diagnosed with stage IV pancreatic cancer.

“When will you start chemo?” I asked Sally.

“Oh, I’m not going to do that,” she said matter-of-factly. “There’s no cure, you know.”

I had trouble processing this decision. How could she make it so quickly? The treatment would be difficult, but it could extend her life, at least, a few months. She had a wonderful family and many friends who were ready and willing to take care of her for as long as it took. She could, at least, start the treatment and see how the tumor responded before making a final decision. What about the possibility, no matter how remote, that a cure or promising clinical trial might be found during those months?

Sally’s response to such arguments made it clear that they were not open to consideration:

“I’m not afraid to die.”

And nothing that happened in the two remaining months of her life convinced me that she felt otherwise. She stopped all medical treatment except for comfort measures and entered hospice care in her home. She lay in her custom bed and looked out the windows of her sun-filled bedroom. She took pain medications as needed. She laughed and enjoyed the company of others. She had a wonderful portrait taken of her family in funny Easter bonnets. It was such a joy to be with her; her daughter never had any problem getting volunteers to help with her care. We all happily took shifts.

And then, one morning, she quietly passed away.

During the time she was ill, she did learn to overcome some of her fear of medical procedures. For example, she had to have daily insulin injections to control her blood sugar. Her daughter was terrified of giving these, so to shield her from this abhorrent task, Sally found the strength to do it herself. I was amazed at how far she had come.

But to myself I always thought, If I had received Sally’s diagnosis, I would have fought it with every medical tool available — chemo, radiation, clinical trials of any kind. I wouldn’t have spent my last months in a sunny room on a soft bed; I would have been hooked up to tubes, puking my guts out. I wouldn’t have been afraid of anything. Bring it on. Anything, that is, except death.

After her death, I realized that I was the one blinded by fear. Sally could clearly see the outcome she wanted: as much time as possible to feel well and enjoy her family; a calm and dignified death. And, because of her bravery, those are the things she got.

Sally was an inspiration to me. But even now, I don’t think I could accept a terminal diagnosis as calmly as she. My faith in medicine would probably compel me to try a more aggressive form of treatment if it were offered. I believe that I would need the time, and perhaps the suffering, to come to terms with my fate. When I ran out of options, I would enter hospice, as Sally did, because I believe that hospice is a wonderful and humane healthcare option for terminal patients.

But my most fervent hope is that if faced with a terminal diagnosis I would know when to stop — and that, like Sally, I would be able to find acceptance and serenity before death.

Liz Witherell is a registered nurse. This piece was originally published in Pulse — voices from the heart of medicine

Image credit: Shutterstock.com

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