“Futile care” is a bioethics theory in which doctors are authorized to refuse wanted life-sustaining treatment based on their belief about the quality of a patient’s life. It can be cruel — and on occasion, mistaken.

Prominent medical journals usually support futile-care theory. But the New England Journal of Medicine just published a contrary column by a compassionate doctor who rejected that approach in order to keep hope alive for his terminally ill patient and her family.

The oncologist, Dr. David N. Korones, placed a young terminally ill cancer patient named Zoha in an experimental drug trial. At first all seemed well, then her condition worsened. From, “The Last Dose:”

Although the rules of the trial allowed Zoha to remain on the study drug, I told her and her parents that a new lesion appearing during therapy is an ominous sign that a drug isn’t working. At the outset, however, I’d told them that the drug could take up to 6 months to work, and they were clinging to that timeline. I hadn’t expected that a number I’d tossed out so casually would become a lifeline for them. I pondered how blunt I should be, whether to tell them again what they already knew. Instead, I opted to hope with them. They wanted to continue the drug, and without hesitation, I renewed their supply for another 2 months.

Death was soon certain. But the patient’s father wanted one last dose. Korones knew it would not prevent the inevitable. But he took extraordinary action to facilitate the request anyway:

When her father called me. Zoha had no more study drug left and was due for another dose in a few days. We couldn’t mail them the drug because a medication that hasn’t yet been approved by the Food and Drug Administration can’t be shipped across the border. I told him I wished the medication was going to make a difference, but at this point her disease was unstoppable. I also told him that if he made the 7-hour round-trip drive from Toronto to Rochester to pick up the medication, Zoha might die while he was away.

“She will not die,” he said, “and it is my duty as her father to continue this medication because that was her wish. I must do this.” It was clear to me that denying her the drug would leave nearly as gaping a hole in her father’s heart as her death would.

Korones drove half-way to meet the father and give him the medication. The grateful father drove home and administered it to his daughter.

Let me pause for a moment. I can’t tell you how many times after a speech bereaved survivors have approached me and accused medical personnel of “killing” their loved one because a wanted “hail Mary” treatment was refused in a curt and uncompassionate manner. This makes people feel as if their loved one was abandoned, even when they were not. I listen and try to assuage their concerns. But my heart breaks. And I think that if only the doctor had understood the need for families to know everything was done that could be, their wish for a last-ditch attempt would be less disdained.

Korones gets that:

I have spent decades with families and children in distress, and I have seen hope in its many shapes and forms shine through the most unspeakable tragedies. It is big. It is powerful. It is an expression of love. It drives decision making for children, families, and clinicians alike. All too often, we fear that hope reflects our patients’ inability to grasp the gravity of their disease, but I think more often than not, it coexists with their understanding of what’s unfolding.

Zoha gently passed away shortly after receiving “the last dose.” But Korones’ compassion made all the difference for the family:

I have spoken to her father a few times since Zoha died. He and his family grieve. He acknowledged that they knew all along that things would not end well. He thanked our team for not only giving Zoha and his family the space to hope, but hoping with them, and doing whatever it took to get her that last dose. Looking back, I know that there was more than medicine in that little brown bag: there was hope.

I worry that the trends in medical education and the primary ideological thrusts of the bioethics movement are pushing medicine away from compassion and toward a crassly utilitarian approach that treats seriously ill patients as cogs and care as a matter of checking the approved boxes. Still, there are signs of a needed pushback. For example, medical professor Dr. Kristin M. Collier prominently advocates for restoring the humane roots to the profession as she advocates for treating patients as persons. (Hit this link for my Humanize podcast interview with Dr. Collier.)

Korones’ essay is another hopeful sign. As a frequent and often bitter critic of the NEJM, I applaud the journal for publishing it.