Amid suffering, a lesson learned: ‘We can always find space to hope’
Click Here to Manage Email Alerts
Editor’s note: This is the first in a series of five stories from ASCO Voices, a session during the 2024 ASCO Annual Meeting focused on the human side of oncology.
Richard Leiter, MD, MA, will never forget the day a young patient’s mother looked him in the eye and accused him of wanting her son, Carlos, to die.
The worst part — Leiter knew she was right.
“I couldn’t sit with all the suffering — Carlos,' his mother’s, his providers,’ my own,” Leiter, an attending physician on the adult inpatient palliative care consult service at Dana-Farber/Brigham and Women’s Hospital, said during his ASCO Voices presentation at ASCO Annual Meeting. “The pain was too great. I needed her to adopt our narrative — that we had done everything we could do to help Carlos live, and now we would do everything we could to help his death be a comfortable one. I needed her to tell me that she understood and accepted what was going on.”
She didn’t — and neither did Leiter. Not yet. It would be the beginning of an important lesson in Leiter’s career.
“Looking back, I missed what is so clear to me now,” he said.
‘My confidence was a few steps ahead of my skills’
Young himself at that time Leiter — a “newly minted palliative care fellow”— found the case an especially devastating one: 21-year-old Carlos had been diagnosed with acute myeloid leukemia a few years prior and had undergone a lifesaving allogeneic stem cell transplant. He had been cured, but now he lay in the hospital’s bone marrow transplant (BMT) unit, his body attacked by the very treatment that had given him life.
Carlos had disseminated graft-versus-host disease — it had progressed to his liver, his lungs, his eyes and, most markedly, his skin.
“The BMT team had called our palliative care team to help with Carlos’ pain,” Leiter said. “GVHD lesions covered his body. They were raw and they were weeping. The pain was unimaginable.”
Yet the situation was even worse than that — Carlos’ liver and kidneys had started failing and the need to address goals of care with his mother felt ever more urgent.
Leiter remembered how the tone of the unit changed that day. Difficult cases, like a young person dying, can transform an inpatient unit, he said, recounting how instead of the routine hum of hospital equipment, nurses and pharmacy techs going about their day, a palpable tension swept the room.
“‘Thank goodness you’re here,’ is what nurse after nurse told my attending and me as we stepped into the unit,” Leiter said. “I was just over a month into my training, and I was progressing quickly. But as happens with so many of us in medicine, my confidence was a few steps ahead of my skills. I thought I had mastered the early and intermediate skills of palliative care communication.”
Leiter and his attending spent hours at Carlos’ bedside, and although they did all they could to alleviate his pain, his prognosis looked worse.
“He was getting sicker, and we weren’t making any progress with his mother, who mostly sat quietly in a corner of the room,” Leiter said. “Each morning, I would dutifully report the overnight events to my attending on rounds. His creatinine was up; his bilirubin was up. My attending shook her head.”
Carlos’ mother, who required the use of the hospital’s Spanish interpreter to communicate, did not seem to be accepting the truth of the situation before her. As far as she was concerned, her son had been cured.
“One of the nurses one day on the floor said, ‘Doesn’t his mother get it? Doesn’t she understand that he’s dying?’” Leiter said. “His liver and kidneys were failing. He was going into respiratory failure.”
‘Hope is a generous collaborator’
The care team decided to convene a family meeting to discuss the situation. Leiter remembers what a beautiful August day it was — warm, sunny and bright. The BMT unit had no windows, however, so the group sat huddled in a cold, gray conference room — the BMT attending, Carlos’ nurse, the Spanish interpreter, the hospital chaplain, the social worker, Leiter and Carlos’ mother.
The clinicians told Carlos’ mother her son’s organs were failing, and they were concerned that his time was short. Yet Carlos’ mother refused to acknowledge this increasingly apparent reality.
“‘I know he’s going to get better. I don’t understand why this is happening. He was cured of his leukemia,’” Leiter recalled Carlos’ mother saying. “‘I hear you telling me his liver and kidneys aren’t working, but I have hope. I hope [his organs] will get better.’”
That’s when Leiter spoke the words that he regrets to this day.
“I said, ‘I hope they will, too.’ I should have stopped there,” he said, “but in my eagerness to show my attending and myself that I could handle this conversation on my own, I kept going. I said, ‘But none of us think they will.’”
It didn’t take long for him to understand his mistake — Carlos’ mother’s reaction, which included calling Leiter “the negative one,” told him everything he needed to know. His attending took over the conversation from there.
“I realized that, of course, his mother did know what was going on,” Leiter said. “She was watching what we were watching. But how could we have asked her to accept what is fundamentally unacceptable, and to comprehend the incomprehensible?”
From that point on, Carlos’ attending physician worked closely with the BMT attending, and they cared for Carlos until the end of his life. Carlos died a few days later, late in the evening.
“I never saw his mother again,” Leiter said.
Leiter has come to understand where he went wrong in that long-ago conversation. He knew he couldn’t have prevented Carlos’ death.
“None of us could have, and none of us could have protected his mother from the unimaginable grief that will stay with her for the rest of her life,” Leiter said. “But I could have made things a little bit less difficult for her. I could have acted as her guide, rather than as her cross-examiner.”
He especially regrets wanting to hasten Carlos’ mother’s acceptance of her devastating circumstances due to his own discomfort. Leiter acknowledged that although her hope was not necessarily realistic, it was what she needed in that moment.
“I know now that hope is a generous collaborator, and it can coexist with rising creatinines and failing livers and fears about intubation,” he said. “As clinicians, we can always find space to hope with our patients and their families, if we look for it.”
Today, when Leiter sits with a terrified and heartbroken family, and they tell him they hope their loved one will get better, he remembers Carlos’ mother’s distraught eyes.
“When they tell me they hope, I know how to respond,” he said. “I tell them ‘I hope so, too.’ And I do.”
Collapse
“I Hope So Too.” ASCO Voices Session. Presented at: ASCO Annual Meeting, May 31-June 4, 2024; Chicago.
Click Here to Manage Email Alerts