Life and Death Decisions: What Keeps Oncologists Up at Night
It was 2 AM. And Rebecca Shatsky, MD, could not sleep.
The breast oncologist was thinking about a patient of hers with metastatic cancer.
The patient’s disease had been asymptomatic for some time. Then without warning, her cancer suddenly exploded. Her bone marrow was failing, and her liver was not far behind.
Shatsky had a treatment plan ready to go but still, she felt uneasy.
“I had to be honest with her that I didn’t know if this plan would work,” said Shatsky, a medical oncologist at University of California, San Diego (UCSD).
That night, after visiting the patient in the hospital, Shatsky lay awake going over her next move, making sure it was the right one and hoping it would help keep the disease at bay.
“It’s so much pressure when someone is depending on you to make life or death decisions,” Shatsky said.
And in the quiet hours of night, these concerns grow louder.
Shatsky is not alone. Oncologists face difficult decisions every day, and many wrestle with these choices long after their day in the clinic is over.
“There’s no off button,” said Aaron Goodman, MD, a hematologist at UCSD Health who goes by “Papa Heme” on Twitter. “I’m always thinking about my patients. Constantly.”
The public rarely gets a glimpse of these private moments. On occasion, oncologists will share a personal story, but more often, insights come from broad research on the ethical, emotional, and psychological toll of practicing medicine.
Many oncologists carry this baggage home with them because they have no other option.
“There is simply no time to process the weight of the day when I’ve got seven more patients who need my full attention before lunch,” Mark Lewis, MD, director, Department of Gastrointestinal Oncology, Intermountain Healthcare, Salt Lake City, Utah. “That is why my processing happens outside of the office, when my brain can be quiet.”
What Am I Missing?
Goodman recognizes the gravity of each decision he makes. He pores over every detail of a patient’s scans, lab results, history, and symptoms.
But no matter how many times he checks and rechecks, one question nags at him: What am I missing?
For Goodman, this exhaustive level of attention is worth it.
“When errors are made, it’s someone’s life,” Goodman says. “Nothing would have prepared me for this responsibility. Until it lies on you, it’s impossible to understand how much trust patients put into us.”
That trust becomes most apparent for Goodman when facing a decision about how to treat a patient with acute myeloid leukemia who’s in remission.
Give more chemotherapy to root out the leukemia cells still lurking in the body, and the patient faces a high risk of the cancer returning. Pick stem cell transplant, and the chance of being cured goes up significantly, but the patient could also die within 100 days of the transplant.
“All together, the data show I’m helping patients with a transplant, but for the individual, I could be causing harm. Someone could be living less because of a decision I made,” Goodman says.
For patients with advanced cancer, oncologists may need to think several moves ahead. Mapping out a patient’s treatment options can feel like a game of chess. Shatsky is always trying to anticipate how the tumor will behave, what is driving it, and how lifestyle factors may influence a patient’s response in the present and the future.
“It is a mind game,” she said. “Like in chess, I try to outsmart my opponent. But with advanced cancer, there are not necessarily clear-cut guidelines or one way to manage the disease, and I have to do the best I can with drugs I have.”
That’s the art of oncology: balancing the many knowns and unknowns of a person’s cancer alongside the toxicities of treatment and a patient’s hopes and goals.
Throughout the year, Don Dizon, MD, will see a number of patients with advanced disease. In these instances, the question he often wrestles with is if the patient can’t be cured, whether more treatment will just cause greater harm.
Dizon recently faced this dilemma with an older patient with metastatic disease who had not done well with an initial treatment regimen. After outlining the risks for more chemotherapy, he explained one option would be to forgo it and simply treat her symptoms.
“It’s an impossible choice,” says Dizon, director of women’s cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital, Providence.
Chemotherapy can provide symptom relief, but it can also be toxic — and patients may be so frail, they can die from more therapy.
“I told my patient, if in your heart, you want to try more therapy, that’s okay. But it’s also okay if you don’t,” Dizon recalls.
Her response: “You’re supposed to give me the answer.”
However, for patients approaching the end of life, there often is no right answer.
“It’s part of the discomfort you live with as a patient and oncologist, and when I leave the clinic, that’s one thing that follows me home,” Dizon says. “At the end of the day, I need to look in the mirror and know I did the best I could.”
The Difficult Conversation
Every Sunday, Lewis feels the weight of the week ahead. He and his wife, a pediatrician, call it the “Sunday scaries.”
It’s when Lewis begins thinking about the delicate conversations to come, rehearsing how he’s going to share the news that a person has advanced cancer or that a cancer, once in remission, has returned.
“Before the pandemic, I had 36 people come to a visit where I delivered some very heavy news and it became a Greek chorus of sobbing,” he recalls.
For every oncologist, delivering bad news is an integral part of the job. But after spending months, sometimes years, with a patient and their family, Lewis knows how to take the temperature of the room — who will likely prefer a more blunt style and who might need a gentler touch.
“The longer you know a patient and family, the better you can gauge the best approach,” Lewis says. “And for some, you know it’ll be complete devastation no matter what.”
When Jennifer Lycette, MD, prepares for a difficult conversation, she’ll run down all the possible ways it could go. Sometimes her brain will get stuck in a loop, cycling through the different trajectories on repeat.
“For years, I didn’t know how to cope with that,” says Lycette, medical director at Providence Oncology and Hematology Care Clinic in Seaside, Oregon. “I wasn’t taught the tools to cope with that in my medical training. It took midcareer professional coaching that I sought out on my own to learn to remind myself that no matter what the person says, I have the experience and skillset to handle what comes next and to simply be present in the moment with the patient.”
The question that now sits with Lycette hours after a visit is what she could have done better. She knows from experience how important it is to choose her words carefully.
Early in her career, Lycette had a patient with stage IV cancer who wanted to know more about the death process. Because most people ask about pain, she assured him that he likely wouldn’t experience too much pain with his type of cancer.
“It will probably be like falling asleep,” Lycette said, hoping she was offering comfort. “When I saw him next, he told me he hadn’t slept.”
He was afraid that if he did, he wouldn’t wake up.
In that moment, Lycette realized the power that her words carry and the importance of trying to understand the inner lives of her patients.
Life Outside the Clinic
Sometimes an oncologist’s late-night ruminations have little to do with cancer itself.
Manali Patel, MD, finds herself worrying if her patients will have enough to eat and whether she will be able to help.
“I was up at 3 AM one morning, thinking about how we’re going to fund a project for patients from low-income households who we discovered were experiencing severe food insecurity — what grants we need, what foundations we can work with,” says Patel, a medical oncologist at Stanford Hospital and Clinics and the VA Palo Alto Health Care System in California.
The past few years of the pandemic have added a new layer of worry for Patel.
“I don’t want my patients to die from a preventable virus when they’ve already been through so much suffering,” Patel says.
This thought feeds worries about how her actions outside the clinic could unintentionally harm her patients. Should she go to a big medical conference? A family gathering? The grocery store?
“There are some places you can’t avoid, but these decisions have caused a lot of strife for me,” she says. “The health and safety of our patients — that’s in our wheelhouse — but so many of the policies are outside of our control.”
The Inevitable Losses and the Wins
For patients with metastatic disease, eventually the treatment options will run out.
Shatsky likes to be upfront with patients about that reality: “There will come a day when I will tell you there’s nothing more I can do, and you need to trust that I’m being honest with you and that’s the truth.”
For Goodman, the devastation that bad news brings patients and families is glaring. He knows there will be no more normalcy in their lives.
“I see a lot of suffering, but I know the suffering happens regardless of whether I see it or not,” Goodman says.
That’s why holding on to the victories can be so important. Goodman recalls a young patient who came to him with a 20 cm tumor and is now cured. “Had I not met that individual and done what I had done, he’d be dead, but now he’s going to live his life,” Goodman says. “But I don’t wake up at 2 AM thinking about that.”
Shatsky gets a lot of joy from the wins — the patients who do really well, the times when she can help a friend or colleagues — and those moments go a long way to outweigh the hurt, worry, and workload.
When dealing with so much gray, “the wins are important, knowing you can make a difference is important,” Dizon says.
And there’s a delicate balance.
“I think patients want an oncologist who cares and is genuinely invested in their outcomes but not someone who is so sad all the time,” Lewis says. “When I lose a patient, I still grieve each loss, but I can’t mourn every patient’s death like it’s a family member. Otherwise, I’d break.”
What would you do if you had terminal cancer?
Dizon recalls how a friend handled the news. She went home and made dinner, he says.
Ultimately, she lived for many years. She saw her kids get married, met her first grandchild, and had time to prepare, something not everyone gets the chance to do.
That’s why it’s important to “do what you normally do as long as you can,” Dizon says. “Live your life.”
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