Whose Hope Is It, Anyway?

By Matt Kalaycio, MD, FACP

One of the wonderful aspects of modern oncologic practice is the ability to treat patients with drugs that really work and have few significant side effects.

I have watched imatinib and other tyrosine kinase inhibitors displace bone marrow transplant for patients with chronic myelogenous leukemia. I am witness to the shift from alkylating agents to immune modulators to proteasome inhibitors to monoclonal antibodies for patients with myeloma. These are incredible advances that, coupled with recent breakthroughs for patients with solid tumors, have led us from an era of poison and progression to one of safety and survival.

A prescription and a pause

It was with this optimism that I looked forward to seeing my patient, RV, in clinic. He and his wife were my friends. We had known each other for years, had socialized together, and I had treated him for chronic lymphocytic leukemia (CLL) off and on during this time. He would joke that he was my worst patient because he frequently was noncompliant and infrequently called to tell me why. A recent CT scan confirmed progressively worsening lymphadenopathy, and I was eager to extol the virtues of the B-cell receptor pathway inhibitors as his next line of treatment.

These remarkable agents — ibrutinib and idelalisib — induce remission in nearly everyone with advanced CLL. Moreover, they are tablets taken by mouth, have mostly manageable side effects and the remissions are generally durable. RV would not struggle with finances either. I felt fairly confident that this treatment was going to work, work well, work long and not cause much in the way of adverse effects. I told him as much. I was preparing to send the prescription to the pharmacy when he looked at me earnestly and asked if he could think about it.

Mulling the alternatives

Alarm bells went off. I had just delivered the perfect sales pitch for a nearly perfect product and hadn’t yet closed the deal.

RV reminded me that he had been on these agents before and knew they worked well. He was on this regimen for a period of three months about two years ago, and quickly responded. We stopped them when he complained of some “foggy brain” that he didn’t like. I was concerned that the fog was being caused by anxiety and referred him to our psycho-oncology team, who agreed with that assessment and started some psychoactive agents that helped lift the fog and raise his spirits. Luckily, he was in remission, so we just stayed off the drugs, deferring retreatment to the time of progression. That time was now, but he was reneging on our tacit agreement.

I explained the consequences of no treatment. He listened.

I offered alternatives like venetoclax, another oral agent that usually works with few side effects. He listened.

I planned to coordinate follow-up with the psycho-oncology team to ensure any and all cognitive side effects would be quickly addressed.

I was selling, but he wasn’t buying.

He demurred and asked about hospice care.

Incredulous, I discussed both palliative and hospice care. The former was compatible with remission-inducing treatment. The latter was unthinkable. RV was in his 60s and in otherwise good health. He was still working. Despite my efforts, he chose hospice.

A death on the patient’s terms

A month later, I hugged his wife at his funeral. It was not a somber event. I met his brothers and children. We laughed about his noncompliance and we agreed that he died on his own terms, peacefully at home, surrounded by family. His was a good death and — even though I disagreed with his decision to forego treatment — I feel privileged to have been able to care for him as long as I did, and grateful that I had the opportunity to ease his suffering.

As medical professionals we are more than happy to accede to ineffective treatment because it is easier to treat a patient for false hope than it is to learn what hope really means to the patient. We are not as happy when patients decline effective treatment, which, for us, provides hope.

For RV, hope meant dying on his terms rather than living according to someone else’s. This kind of courage is just as valid and honorable as the kind we usually expect and admire.

Oncologists often claim that we would decline most of our own treatments, even as we inflict them on others. That was truer in the past than it is now, but it remains a common refrain. We convince ourselves that treatment is what the patient, or their family, wants. While often true, it is not always true.

RV had the courage to challenge my prejudice. Do we oncologists have the courage to challenge our own?

Dr. Kalaycio is Chairman of Cleveland Clinic Cancer Center’s Department of Hematology and Medical Oncology, and a staff member of the Transplant Center and the Department of Cancer Biology. He also is Professor of Medicine at Cleveland Clinic Lerner College of Medicine.