Was the Diagnosis and Treatment Correct?

Newspapers post many stories about physicians making diagnostic mistakes. As a physician, I always regretted missing a diagnosis, but it generally didn't happen often. Hans Duvefelt often writes about what physicians really do when they diagnose patients, and the process doesn't fit any handy recurring actions scrapable by AI engines. Indeed, diagnosis often involves thoughts on the part of physicians which never make it to even spoken words, much less written ones which can be slurped up as data.

What we don't hear much about in diagnosis is what Adam Cifu calls the counterfactuals in clinical medicine. Today, the term “counterfactual” is most often used when we already know how things turned out given the medical decisions we made with our patients. What we don't know is how things would have turned out had we made different decisions. When treatment takes a turn for the worse. I often regret not knowing what else might have worked, or for lack of a better description, counterfactuals.

Six years ago, I met a charming, 92-year-old twice-widowed woman, who was happily ensconced in her own home, surrounded by trees she and her first husband had planted and artwork provided by her long-deceased younger sister. Everybody in her family who was close to her was gone. I saw her once a month for healthcare maintenance.

I enjoyed seeing her and listening to her stories about surviving World War II in Germany. She also had written what she had intended to be a children’s book, titled Brutus Bear and the Green Forest State. Full of double meetings, I enjoyed reading the book. It was one of those stories as full of meaning for adults as for children.

The first time I met her, she had developed atrial fibrillation with a rapid ventricular response. I prescribed a rate controller, which also controlled her rhythm. I took a chest x-ray and could see that she had significant cancer on her right lung. I talked with her about lung cancer. I was left with three impressions. First, she didn’t want to know about the cancer. Second, she didn’t want treatment. Third, I’m not sure we could ever have gotten to the point of informed consent for cancer treatment.

By seeing her monthly, I was hoping to keep her in her home and out of the nursing home. Twice she came in with bruises on her face looking as if she might have fallen down the steps or been in a car accident. The problem was she didn’t know how she had gotten the bruises. She had some support systems at home. A neighbor woman would look in on her from time to time and make sure she got enough to eat and got to her appointments.

After I retired, the doctor who took my place didn’t waste any time getting her into the nursing home. Home care would have been cheaper and much more to my patient's liking, but it is very hard to find. My former patient is now 98 years old and in long-term care not because of her lung cancer but because of her dementia.

The only difference the lung cancer has made in her life is that she is now on nasal canula oxygen. But at 98, she recognizes me and can carry on a pleasant conversation. So, was her decision to not treat her cancer in her best interest? Yes, I think it was.

I do regret that because I am no longer practicing, she is presently in the nursing home. Yes, the nursing home is not the best place for her, but she is alive. I believe that treatment for her cancer would probably have shortened her life and made the remaining portion miserable. We can probably say that she will die with lung cancer but not from it.

This was a decision my patient and I made together, and it seems to have been the correct decision. I don’t need a "counterfactual" result, what would have happened if she had decided to have treatment for her lung cancer. So for this decision, we have the absence of need for a reassuring counterfactual, but as Adam Cifu notes in his article, physicians still often find themselves in the position of the absence of a reassuring counterfactual.

There are many reasons that keeping people out of the nursing home makes sense. In the first place, they are almost all happier to be in their own home. And secondly, for $150 or less each month that I saw a patient, I could save Medicaid $15,000 a month of nursing home payments.

Eight years ago, two women came to see me, both 74 years old. Both were undergoing chemotherapy for colon cancer. The one decided to stop the chemotherapy because she was getting sick from it. After eight years, she is still living. The other patient decided to continue her chemotherapy. She got very sick on the chemotherapy and I suggested she consider discontinuing the treatment and taking supplemental IV nutrition. She chose to continue the chemotherapy. She died two months later.

I think the counterfactual here would have been to discontinue the chemotherapy and to take IV nutrition. Being neither omniscient nor omnipotent, physicians cannot be right 100 percent of the time. Sometimes we can suggest changes in treatments which aren't going well, but we lack counterfactuals.

Physicians make life and death decisions about the care of their patients every day. In retrospect, seeing how treatment may have had a better outcome is going to happen to all of us. Unfortunately, there are many players in healthcare who have their play-book full of “correct” answers and don’t mind blaming physicians with checklists of what might have worked better under the circumstances.

Years ago the standards of care for given medical conditions were developed so the legal system had some sort of guidance to follow in making decisions about the quality of the healthcare provided by physicians and hospitals. Because every person is different, sometimes the standards of care actually don't work well for some patients. But what started out to be a guide for what kind of care should be provided for specific conditions has been misused. In court, when the patient actually fares better with treatment outside the standard of care, the court system can still hold the physician accountable for providing effective treatment which did not meet the standard of care. Counterfactuals may sometimes exist, but they may be unrecognized as the better, more effective treatment.  

Once again, I say let physicians be physicians. Playbooks do not always have the correct answers in the practice of medicine.