Lessons in Hope – The Patient Who Changed an Oncologist’s Perspective

The cancer diagnosis and treatment process, for patients, their loved ones and healthcare professionals, is a challenging and exhausting journey. The power of hope plays an important role in this process. As an oncologist, I believe that it is possible to give my patients hope at every stage without compromising honesty. However, in our country, the difficulties of being honest with patients, combined with families’ desire to keep patients’ spirits high, create a complex situation. In such circumstances, as doctors, we must consider both patients’ rights and families’ emotional states. Finding something to hold on to in every situation, without concealing the facts, and keeping patients’ hope alive is our duty as healthcare professionals. Yet, while fulfilling this duty, we must also take cultural sensitivities and wishes into account.

In this article, at the ASCO 2024 meeting, I will share stories filled with striking examples of the importance of hope and the lessons drawn from them.

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21-year-old Carlos was fighting for his life in a hospital bed. Following a stem cell transplant for leukemia, he had developed life-threatening graft-versus-host disease .

But Carlos’s mother had not lost hope.

"I have hope that he will get better during treatment," she said, through an interpreter, to palliative care doctor Dr. Richard Leiter, who was in training at the time.

"I hope so," said the doctor.

At the ASCO Voices session during the ASCO 2024 annual meeting, Dr. Leiter described a lesson about hope he had learned early in his career: "I should have stopped there," he said. "But I mistakenly kept going in my own way, to show that I could handle this conversation."

"None of us thinks he will get better," Dr. Leiter continued.

Carlos’s mother looked at Leiter. "You want him to die," she said.

"Even then, I knew she was right," Leiter said.

Although he could do nothing to save Carlos, Leiter could not bear this emotional pain. "The pain was too much," Leiter said. "I wanted her to fit into our narrative, because we had now done everything we could to keep him alive, and next we would do everything we could to make the dying process comfortable."

But looking back, Leiter wondered: "How could we ask them to accept what was fundamentally unacceptable, or to comprehend what was impossible to understand—that his death would happen soon?"

The Art and Science of Hope

Hope is not merely a feature of how the human brain works; it is also a measurable and modifiable construct that can affect life outcomes, said Dr. Alan B. Astrow at the ASCO symposium on "The Art and Science of Hope".

"How we think about hope directly affects patient care," Dr. Astrow said.

He said that, whatever the patient’s neurobiological condition, “hope is an immense gift” and forms the foundation of human existence.

Physicians have the capacity to restore or destroy a patient’s hopes, and those who understand the importance of hope will want to offer this gift to others.

Asking patients about their hopes is the “golden question,” Dr. Steven Z. Pantilat said at the symposium. "When you think about the future, what are you hoping for?" is an important question to ask.

The answers usually reveal "things that are very important to patients, but lie beyond treatment, and with which we can help", Dr. Pantilat said.

Pantilat recalled a patient with advanced pancreatic cancer who wanted to see his daughter’s wedding in 10 months. He knew that this was unlikely, but the conversation revealed another solution.

His daughter moved the wedding to the Intensive Care Unit.

These examples show how critical hope is in relationships between healthcare professionals and patients. Hope is a powerful tool that can help patients cope with difficulties, and healthcare professionals should do all they can to support it.

Hope Can Be Sustained and Strengthened Even in the Darkest Times

Hope can be sustained and strengthened even in the darkest times, and "we doctors should be in the business of genuine hope," Dr. Pantilat said.

Some patients may hope for treatment, while others may wish for more time with their families or freedom from suffering. People "can still hope for anything that may happen, even though many things cannot happen," he added.

However, fear that a patient will hope for treatment and that the difficult conversations that follow will destroy hope or create false hope can sometimes prevent doctors from initiating the conversation.

"When talking about their hopes, we want to be honest with our patients—compassionate and kind, but honest," Pantilat explained. Sometimes he needs to tell patients: "I wish this were possible. I wish I had a treatment that would eliminate your cancer, but unfortunately I do not. So let’s think about what else we can do to help you," he said.

It is important to have these difficult conversations. Although limited, there is evidence that feeling hopeful can improve patients’ overall well-being and even cancer outcomes.

For example, one study found that patients who felt more hopeful had lower levels of depression and anxiety. Early research suggests that higher levels of hope in patients with ovarian cancer (cancer of the ovaries in women) may play a role in reducing inflammation and may even improve survival in some patients with advanced cancer.

For Dr. Leiter, these lessons came early in his career as a palliative care doctor, but they still influence his practice today.

"I could not have prevented Carlos’s death. None of us could, and none of us could have protected his mother from the unimaginable pain she would carry for the rest of her life," he said. "But I could have made things a little less difficult for her."

"I could have been a guide rather than a cross-examiner," he continued, noting that he now views hope as a “generous collaborator” that can coexist with rising creatinine levels, failing livers and fears of intubation.

"As doctors, we can always find room to hope alongside our patients and their families," he said. "Now, years later, when I sit with a frightened and grieving family and they tell me they hope their loved one will get better, I remember Carlos’s mother’s eyes piercing mine... and I know how to answer: ‘I hope so, too.’ And I really do."