“When there’s no place for the scalpel, words are the surgeon’s only tool.”

-Paul Kalanithi, When Breath Becomes Air

 

Mrs. Jordan, a withered leaf of a woman, sits crumpled in the clinic exam chair. I introduce myself to everyone. Her husband, sister, and daughter are serious, substantial people who shake my hand firmly. The woman’s grip barely registers.

She has been through much over the past year. After her surgery, she received a combination of radiation therapy and chemotherapy for her aggressive tongue cancer. She tells me that she quit smoking, improved her diet, attempted to go for a daily walk, endeavored to be positive, enlisted prayer partners, and practiced self care for the first time in years. “I have been trying very hard.”  

“That is great,” I respond. “ So, how can I help you?” I know that she is visiting other centers after having learned that her cancer has recurred. Her prior surgeon has said that she is not a candidate for another operation. They want to see if surgery might still be an option to rid her of her disease.

“The doctors back home have her on chemo,” her husband tells me. “We’re in a holding pattern.” He looks at her and she nods back. “She wants to keep fighting.”

“I can see that she has been working very hard,” I say. The daughter picks up her pen. There are several questions written on her notepad and she fills in the blank spaces as we talk. They ask about the cancer and its treatment. What might we offer? What are the risks, given that she is so weak? How urgent is it? Her husband leans forward, attentive to every word, raising his eyebrows whenever I pause to frame my responses.

“Before I make any recommendations,” I say, “let me examine you.”

I put on a headlight and wash my hands, then roll across the floor toward her on the examination chair. She winces as I feel inside her mouth. “That’s okay, Doc. Do what you gotta do.” The mass is hard and fixed to the jaw. There are enlarged, firm lymph nodes in the upper neck. Her tongue does not move well. I look at her voice box with a mirror and can see that the cancer is creeping down the wall on the inside of her throat.

As I work through the exam, I am increasingly concerned about her cancer and what I would need to do in the operating room. The mass is large but could be removed. It would be a difficult, long procedure and the reconstruction would be complex. Healing might be a problem given her overall condition. She is, indeed, a poor candidate for surgery although it might still offer a slim chance for a cure.

“The physicians at the other hospital ordered some new scans a couple of days ago,” the sister says. “Have you seen them?”

“No. Let’s pull them up and see what they can tell us.”

I log into the computer and pull up the images. The neck scan confirms what I already know. This is a large cancer but surgery is – barely – an option.

Next, I pull up the CT scan of the chest and review the report. “Oh, oh.”

I turn the screen toward the patient and her family. “These are her lungs on the scan. Unfortunately, there are several masses in the lungs that the radiologist believes are new and growing. These are a sign that the cancer has spread. I wish I had different news for you but when these cancers spread to other parts of the body, they are very dangerous. Surgery would not be helpful to her.”

The daughter puts down her pen. “What do you mean?” she asks. “No surgery?”

“Even with an operation, the cancer will continue to grow in these new places. We need an approach that addresses the rest of the body, not just the mouth.”

Surgeon Atul Gawande in his book Being Mortal offers guidance to physicians and families on how to navigate these difficult discussions. For years, my approach for patients with recurrent, non-resectable cancer was to send them off to the medical oncologist with an optimistic but noncommittal “perhaps chemotherapy will slow down or knock out the rest of the cancer.” I have told people about the occasional patient who has had an amazing response – wondrous, miraculous cures – with chemotherapy. I cling to these cases because they have been so delightful and memorable.

More often, though, cancers treated for a second, third, or fourth time become increasingly resistant to chemotherapy. Responses – and miracles – are short-lived and the effects of both the treatment and the cancer can become increasingly burdensome for both patient and family.

Of course, chemotherapy, targeted agents, and clinical trials are absolutely the right thing to recommend at times but I now know that my enthusiasm should be tempered with honesty and compassion. 

Gawande quotes palliative care physician Susan Block MD who chides physicians for dwelling on statistics and endless courses of treatment. "We focus on the facts and the options. But that’s a mistake.” Our primary task during these discussions should be to help people negotiate their overwhelming anxieties. Different individuals face different struggles but the biggest issues might be dealing with death, avoiding suffering, protecting loved ones from worry, and avoiding financial ruin. When dealing with patients and families at these junctures, Gawande tells us, “you’re not determining whether they want Treatment X or Treatment Y…you’re trying to learn what’s most important to them under the circumstances.”

As I sit in the exam room with Mrs. Jordan and her family, I am acutely aware that we met only a little while ago and she is not really my patient. Yet, the words I have shared have opened a gaping chasm at their feet.  So, I try steer toward topics that Dr. Block covers in these conversations:

  • What do you understand about your situation and your prognosis?
  • What are your fears and hopes?
  • What trade-offs are you willing to make and not make?
  • How do you want to spend time if your health worsens?
  • Who will make your decisions when you cannot?

Gawande hopes families like the Jordans will talk through the questions and decide what course of actions best serves their collective understanding.

On this day, we only scratch the surface. “Well, I knew when we came in here that the cancer was getting worse,” Mrs. Jordan says. "But my hopes and dreams? I still hope to be cured of this! But, if not, my goal is to spend as much time as possible with my eight grandchildren. And I would love to see my sister in Florida.” The family shares a couple of stories about the kids. Someone chuckles. It feels like a start.

Gawande writes, “we’ve been wrong about what our job is in medicine. We think that our job is to ensure health and survival. But really it is larger than that. It is to enable well being.”

I like that. Attending to well being rather than survival requires me to listen and find out what makes life worthwhile for my patients. The discussions are not easy. But even we surgeons are capable of initiating these critical, pivotal conversations when surgery is not an option.

 

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About the Author

Bruce Campbell, MD, grew up in the Chicago area, graduating from Purdue University and Rush Medical College. He completed an otolaryngology residency at the Medical College of Wisconsin and a head and neck surgery fellowship at M.D. Anderson Cancer Center. He was a faculty member, ENT specialist and surgeon with Froedtert & MCW health network from 1987 until his retirement in 2021.

Aleta Chossek

I hope that many physicians and case managers read this and take it to heart. It is difficult work to tend to a very sick person's well being. Walking with some people now who have had to chose well being over treatment and know the important role that physicians play in that. Thanks Bruce for saying it so clearly and compassionately.

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