Previously in this space, I have shared my conversations with terminally ill patients and their perspectives regarding patient-centeredness and what is important to them.
The writing that follows is different, and powerful because it highlights the humanness and development of a great physician in a profoundly open and vulnerable way.
My guest writer is an amazing man, son, husband, father, physician and leader. He is Dr. Dan Zuckerman, executive medical director for St. Luke’s Mountain States Tumor Institute. His insights about patient-centeredness and how an oncologist learns, with experience and maturity, the importance of details and of words in helping patients come to an understanding and some measure of peace with their disease, their prognosis and their end-of-life decisions are personal and deeply moving.
Dr. Zuckerman shares a valuable lesson – sometimes, in the busy, demanding practice of a physician, you just need to stop, be still, be present and simply allow the right words to come.
- David C. Pate, M.D., J.D.
There are places where yelling, blather, obfuscation, oversimplification, denial and truth-avoidance are acceptable, perhaps even rewarded.
The oncology clinic is not one of them.
Sugar-coating is not so sweet. Hand-waving is frowned upon. Glossing over details comes back to bite you. “Doc, give it to me straight,” and “Can you explain that better?” are among our most common requests.
When I was a medical student, I spent a lot of time studying anatomy and physiology: Which cranial nerve moves your tongue to the left? Where is the organ of Zuckerkandl? Why do I feel like poking my eyeball out with this retractor in the sixth hour of this surgery?
When I was a resident, I spent a lot of time learning the breadth of human disease and how to treat it. Replete this potassium. See this Q wave. Start Cefepime IV stat!
When I was an oncology fellow, I honed my understanding of human disease related to cancer and learned the myriad ways – chemotherapy, radiation, hormonal manipulation, immunotherapy – we could beat back cancer, sometimes cure it.
There was very little formal training on how to talk to patients. I assume that they assumed our parents had already taken care of that.
But you learn quickly how important what we say and how we say it is to our patients. Otherwise, I’m just a 175-pound walking medical textbook – and IBM Watson has already made those obsolete.
Let’s enter the clinic room, pull a chair to the bedside and go where words and quiet matter, a place where your heart must slow, your skin must thicken and your mind must expand.
There was a 36-year-old man with an aggressive non-Hodgkin lymphoma who was doing well for more than a year. He looked like he had wandered off the set of a Richard Linklater movie.
He came to every clinic visit with a book in his hand. Sometimes Stephen King, sometimes Kurt Vonnegut, often some interesting author I had never heard of. And he would arrive with his mom.
His cancer relapsed and had begun to spread to his brain, and his clinic visits became more frequent. It was harder for him to read. I remember our last clinic visit vividly, and the difficulty of telling him that further chemotherapy would not help. He looked down quietly and thumbed the pages of his book. His mom cried. I stopped talking. We set him up with hospice care, and he went home and died several weeks later. I thought I had done a good job.
A month later, I got a letter from his mom. It said, “I want to thank you for all the care you gave to my son. But I also want to let you know how upset I am. The last day we saw you and you told him that bad news – it was his birthday. I wanted to take him out for a birthday dinner, but he was so depressed after you talked to him that he didn’t want to go out that night. I feel like you robbed me of my last birthday dinner with my son.”
The criticism stung. I thought, “What else could I have done?” I was embarrassed that I hadn’t noticed it was his birthday – it’s on the label on the colored folder I have in my hand when I walk in the door. It was an important detail and I had overlooked it. Might I have changed my approach, might I have re-framed my words or altered my tone, might I have nudged the can down the road for just a few more days? I don’t know.
I waited a few weeks. Then I wrote his mom a letter and told her that I was sorry.
Patients and their families have told me many stories over the years that end in “… and that word just stuck in my head.”
I know it’s hard to believe, when we live in an age when words are flung around with as much care and accuracy as Cheerios from a toddler. I still marvel at how patients can recall exact conversations, down to the word, even years later.
It makes sense. We’re discussing life and death. A wife asks, “How much time?” A child asks, “Should we have a wedding in October?” Should I exclaim, “LOTS!!! Probably,” or “It’ll all be fine!”?
Us oncologists, we’re as human as you are, and our fast-twitch brains certainly are tempted. But we govern ourselves, and we tell the truth.
There was a term common – less so now – in the oncology vocabulary, “salvage chemotherapy,” which referred to chemotherapy given after a patient’s cancer had relapsed and there was no longer a chance for cure.
We learned it as fellows. We heard our mentors use it. I suspect the word “salvage” subconsciously appealed to the white-haired, Ivy-league-trained giants of our field as a way to burnish our cerebral endeavors with a bit of the masculine and the manual. I can tell you it does not carry such appeal for patients.
I don’t even remember saying it. It was early in my career and several years into taking care of a patient, and he brought this up toward the end of his life, when cataloguing is common and, I think, necessary.
He asked me, “Do you remember when you offered me salvage chemotherapy?” I said that I did. He laughed and said, “Man, ever since you said that I’ve just thought of my body as a broken-down piece of junk!” and laughed again.
He thought it was funny. Or so he told me – for which I’m thankful. I used the term a few more times, just out of habit. I haven’t used the word “salvage” since.
Conversations at the end of life are not always like you imagine or see in the movies. There are definitely tremendous expressions of love and regret and sadness and hope, sometimes in phases, sometimes all at once and everything in between.
Usually there is the desire to see another milestone – a wedding, an anniversary … a birthday. Sometimes, they are surprisingly prosaic.
One of my patients was indigent and didn’t own much. She asked for a big screen TV from Wish Granters so that she could watch her beloved Green Bay Packers through the playoff seasons.
I had a patient who was an unemployed journeyman and already knew his cancer was terminal when he came to me. He was $10,000 in debt and had a life insurance policy that he could cash out early with a letter from an oncologist certifying his prognosis. He said in a grumble from under his moustache, “I just want to go out clean.” Once I signed the papers, he walked out of clinic, and that was it.
I recently saw a patient in the hospital, a very young man who was recently married. His cancer had progressed through several lines of chemotherapy and immunotherapy and his body was weakening.
I sat at his bedside and we had a tough and clear-eyed conversation. He wanted to know about more chemotherapy options. And then he said, “I don’t want to just grasp at straws ... … … but I want to grasp at straws.”
I’ve heard the term hundreds of times. I’ve said it myself, gently. But I had never heard it the way he said it, and it said everything.
He and his wife and I sat in silence. These were silences that an old me might have broken too soon, to blurt out something, anything.
I’ve learned to stop doing that and just sit still. Eventually, I told him slowly, “I want you to grasp at straws … … … but I have to tell you to stop grasping at straws.”
Dr. Dan Zuckerman is the medical director of St. Luke’s Mountain States Tumor Institute.