Despite the years, I have not talked about this case.   It is not a privacy – HIPAA problem, rather I did not want to upset the patient and family. I am not certain that was the right decision; at the time, it seemed best. Still, the patient died, the family moved on, and I carry a guilty memory.

It was after deteriorating months of corrosive cancer that we met. Multiple systems were failing; kidneys, lungs, blood. She had received aggressive care by well meaning doctors and great support from a loving family. Tests, treatment and pain. No stone unturned. No stone except the right one.

The doctors thought she had “Disease A.” They missed when “Disease A” changed to “Disease B.”   This second illness, “Disease B,” was aggressive, horrible and not curable. Any chance of control required a completely different approach.

Her doctors did not understand what was happening. As they worked to control the wrong illness, the patient fell apart. This was not from lack of trying or lack of insurance or lack of thought. It was from lack of training.

It required physicians trained in a different specialty. The patient needed, desperately, to see a medical oncologist. However, like the old adage “if all you have is a hammer, the world looks like a nail,” the treating doctors worked hard to cure an illness, “Disease A,” that was not there.

The doctors were of a specialty not trained in Disease B. This happens all the time. If I am seeing a patient who has lung cancer and they develop chest pain, sometimes it turns out not to be cancer, but a blood clot or heart disease. That requires a different approach, often a different type of doctor. No big deal. Call a consult …or two. The problem with this case was that the new problem was so far out of their area of expertise that the original team failed to recognize why things were out of control. The patient deteriorated, approaching death.

I would not be fixated on this case, if all that had happened was a missed or delayed diagnosis. Sadly, this occurs all the time. “Disease B” was obvious, from an oncologists’ view of the world, so I understood the problem quickly. It did not require complex or out-of-the-box thinking. I get no marks for genius.

What bothers me, years later, was the reaction of the treating doctors when I called to let them know my recommendation and diagnosis. Instead of saying, “damn, I cannot believe we missed that,” or “thanks so much, what can we do to help?” they said, “That cannot be right, we need to get more tests, and we are going to tell the family to get another opinion.”

I was trapped. The patient needed rapid, correct, intervention. On the other hand, the family had a close and trusting relationship with the primary docs, who had worked heart-and-soul for months to save their loved one. If I told the family, “hey, your doctors do not know what they are doing,” that would shatter a vital relationship in care, as well has produce guilt, because of the failure of the family to get a second opinion earlier. The patient was going to die, what good would it be to destroy a meaningful therapeutic and coping relationship?

Now I expect you are thinking, “just like a doctor, they stick together and they will never testify against each other, especially when there might be malpractice.” An easy response, but that misses the point. The lawyers could be called later.

I had two priorities. First, preserve the support system of the patient and family. Second, and most important, get new treatment started. I could not do one, without the other. This was a bad moment to point out error and begin recriminations. I was already trapped, why undermine and confuse the family further? Life and death time was of the essence.

The best tool in this situation is communication. Convince the patient and family that you can be trusted and explain the situation in detail, in order to build a new plan. Experience has taught me to keep prior doctors in the loop. Encouraging their buy-in is vital.

Well, like most such cases, things went “fair.” The family did delay, briefly, in order to get a “third opinion.” That oncologist agreed with me, but ordered more tests, which added nothing. The patient came back to me for treatment, which we began immediately. However, she was already so frail that though she responded to therapy, she never regained meaningful function. I recommended hospice. The original doctors suggested more therapy. She developed a morbid complication and died in the hospital, after a brief stay.

Messy. Unfair. Sad. Would it have made a big difference if this patient had seen me earlier or if her primary docs had handed off the case at the proper time? From a quality of life standpoint, probably, but her cancer was terrible and not curable from the start. Still, I feel bad. This patient could have gotten better treatment and, when she did die, there might have been the chance for a smoother close to her life, or perhaps, a little more time.

Unanswered questions remain.   How do we protect patients from well meaning, committed, compassionate, but wrong care?   Did I have a responsibility to explain to this patient, this family, that errors had occurred, or is my role to provide treatment and communication, which give the greatest likelihood of physical and emotional health?   Who makes decisions when doctors disagree?

The first step is never forget that we are all frail, fallible, and even the best of patients, families and doctors make mistakes. Then, move forward, step-by-step, together.



  • My most earnest hope as a patient or family member of a patient who has been misdiagnosed and mistreated would be that the doctor who makes the correct diagnosis put his or her best efforts into providing the other treating doctors with a synopsis of diagnosis history so that they become better informed and more likely to avoid similar errors in the future. I have witnessed a similar, protracted period of misdiagnosis involving several specialists which ended up with an untreatable disease diagnosis (MSA) for my friend. We have no idea whether the neurologist who ultimately diagnosed this communicated his reasoning with the other physicians, including two others neurologists who had given two other diagnoses.
  • Liz
    You said, "How do we protect patients from well meaning, committed, compassionate, but wrong care? Did I have a responsibility to explain to this patient, this family, that errors had occurred, or is my role to provide treatment and communication, which give the greatest likelihood of physical and emotional health? The easiest one is the answer to who makes the decision when doctors disagree. The patient or whomever they want to have make the decision. Each doctor can argue what they want, encourage yet another opinion, but in the end the patient, not the doctor, decides which doctor's opinion they go with. Protecting a patient from wrong care presumes that (a) you are right (which may or may not be the case) and (b) you are willing to get into the middle of a situation that will end up being very messy, likely acrimonious, and in this country likely end up in a lawsuit - because you are right that means someone else is wrong (or vise versa) and in a case where harm is done that is not likely to end well for both the patient and thus likely at least one of the doctors. Telling them someone else screwed up again presumes you are right and the other person is wrong (not necessarily a given). Encouraging them to get a third opinion (and facilitate that by calling where they want to do to speed it up if time is of the essence) is one way that they can see a preponderance of opinion without you having to say the other person screwed up. There are ways you can cushion how you say someone else screwed up (for example if the disease is hard to diagnosis and mimics an extension of what else was already going on). If they are going to die anyway and any treatment isn't going to change the time line by much (if at all) or the outcome - does it really matter? Then wouldn't the better approach be to push for end of life care? Power struggles between doctors (or any human being) rarely end well. Instead of looking at things as a fixed pie, either/or situation, what about approaching this cooperatively. That will require not attacking the competency of the doctor who is wrong, rather addressing it from the point of view that we now have this mess, what is the best way we can fix it together? In business the research based advise is that when an employee screws up the better approach is not to attach blame, rather to look at the past as water under the bridge and focus on how to fix the situation (likely a less than ideal situation) that everyone now finds themselves in. In this cases like this it may mean working in tandem with the patient's primary doctor that they trust. Heck comprehensive cancer centers decide on the course of treatment all the time that then local doctors not affiliated with them carry out. If you get away from I'm right, they are wrong and look at the underlying issue that needs solved and then work together collaboratively to do so likely there will be other solutions that address the problem. If you are stuck in thinking doing the right thing for the patient means forcing someone else to wear a scarlet M (mistake) on their forehead then likely you are going to face two battles not one. The one with the doctor and the one with the patient. It seems to me that priority number 1 is to fix the situation for the patient and doing that in a way that isn't going to cause WW3 in relationships, alienate doctors, alienate patients...all of which can delay treatment. You can't change the past, you have to deal with what the situation is right now; that is where the focus needs to be. There is time later to point out malpractice - presuming it was malpractice rather than an unfortunate set of circumstances that came together for the patient. Pointing it out now isn't going to accomplish anything in the moment other than satisfy your ego and may well serve to slow down the patient getting appropriate care. There is more than one way to deal with this. The better part of finding creative solutions is to identify the underlying issues (so you are talking about issues and all the different ways to address them rather than arguing over two different ways to address an issue - potentially ignoring other relevant issues and often missing other solutions that are out there that may do a better job of addressing the underlying issues), the priorities, whose best interests should take priority even if there is self cost, etc. and then collaborate together to brainstorm ways to do this, to meet as many needs, especially and most importantly, the high priority needs as possible... This also has similarities to a fundamental ethical dilemma that has no ultimate solution (thus why it is a dilemma) - is something ethical because the process you used was ethical even though the outcome was unjust or is something ethical because the outcome was just even if the means to get there was unjust/unethical? This kind of situation would be a good case study for medical students - identify all the issues involved from each point of view, prioritize them, identify road blocks each party will have with respect to hearing what others have to say, look at the outcomes (long term and short term) for ALL parties with different choices... Have them then specifically focus on how to structure a solution that meets as many needs as possible (and is most likely to be implemented and why) to address the immediate concerns then then any longer term concerns.
  • meyati
    Dear Doctor, don't feel bad. I went through that as a patient on several different levels. One part was that my PCP wanted me to lose weight, but my oncologists told me to fatten up before oncology treatment started so I could survive. My oncologists at 2 different clinics (regular oncology and a MD Anderson oncology radiation) were and are monitoring my weight. It's a head/ throat cancer, which I've heard has a high mortality rate, even if the treatment is successful. Both of my oncologists called the PCP and talked to him. It didn't work. I guess the PCP wasn't used to a patient that could talk to their specialists, and the specialists acted. I went in for a thyroid visit to my PCP-it was out of range. All I heard on that visit was how dare the 2 oncologists call him and tell him to leave my weight alone. I was in a network, where I couldn't change PCPs. This PCP said that I had diabetes, and I needed to lose weight-and he had his own lab. I demanded the labs. He ordered new tests for everything, Hep, clotting, STDs, etc. and buried the glucose, where I had to open several tabs for glucose and the sugar stick. I printed them out, and I carried them around and showed them to counselors, doctors, nurses, etc. The comment that I got was, "Gee, I'm 45, and you're 71, and my sugar stick is higher, and I don't have diabetes." Things like that. I left copies of the glucose labs at my oncologists' desks. Another problem is that the plastic surgeon did a absolutely beautiful job on my face. I had the darn thing under my nose for over 25 years-and everybody decided it was a funny cyst. To be blunt- the HMO Adavantage plan got me a new doctor that took control of my thyriod, and the old PCP lost his license. I knew my body, and I know that when I get sick enough for ER, my blood sugar is really low. I had 2 seizures because of low blood sugar when I was young, and it was a problem during pregnancies. I could not understand how this leads to diabetes, and I get complete labs twice a year at oncology You did the best that you could, with the knowledge that you had. If a doctor has a closed mind, a super ego, and are a "know it all", you can't talk to them. My PCP was-"How dare your oncologists call me. They don't know anything about general health." If the patients close their minds and put their complete trust in doctors, witout asking questions, nothing can dissuade the patient to change doctors or treatments. I know the deep despair I would feel, if I lost my oncology radiologist. Everybody told me that I'd a horrble death in about 18 months. They wanted to cut my face off-bone and all. Now they are worried about secondary cancers. I trust them, so I don't worry. Sometimes all you can do is to watch the train wreck. You never forget, but you should quit beating yourself up. Thanks for sharing, and I hope that it leads to more alert patients and families
  • Penny H.
    I agree with others who have noted that, ultimately, the patient's care has to be decided by the patient. I don't understand patients who aren't willing to learn and become informed about their own disease processes. That said, no matter how much you trust your pcp, as a patient you must have the courage to tell him/her, "no". It's not nearly so dramatic a scenario (thank God), but last year, when my pcp ordered an MRI to see why I was having ongoing sciatica, a lesion at L5/S1 was found, along with some findings the radiologist reading the MRI was unsure about in one of my kidneys. My pcp was alarmed and wanted to send me to several different specialists, none of whom were oncologists. I still don't understand his reaction, but my own reaction was, "Dr. H., I have a wonderful oncologist already. You sent me to him yourself and he's been treating me for 3 years. I'm not seeing anybody else until I talk to him. He'll handle it, and if other specialists need to be called, he'll call them." As it turned out, the lesion wasn't from Waldenstrom's (the NHL, that was accurately diagnosed and that had been managed for the past three years); it was from a different type of NHL, a more aggressive one. This new cancer was diagnosed promptly and treatment ensued promptly. The time that could have been wasted had I followed my pcp's advice would have been my fault and nobody else's. I'm happy to report the diffuse large b-cell lymphoma that caused the multiple lesions and was all extra-nodal is now in remission. The point being, I knew my pcp was in no position to refer me, considering my history, to anyone new and it was my responsibility to say no to him in that regard. Stop beating yourself up, doctor. None of that was your fault and you did the best you could with what you had to work with.
  • LH
    Pointing fingers and assigning blame to human beings does nothing to correct the harm that may befall a patient when they receive care from a doctor. None of them can work miracles, and for the most part they do the best that they can, and just like everyone else, their best may not always be enough to keep their patient from dying. I think everyone's interest in situations such as this should be what is best for the patient and the family at the moment of discovery. What's best for the treating physician or the consulting physician should be secondary to what is best for the patient and the family. If your decisions are driven by what is best for the patient, you may fall short in your judgement from time to time, but your decision to move forward for what is best for the patient will be the correct one.
  • Kathryn Zusmanis
    Medicine should not be so compartmentalized in the first place. Remember when a doctor could care for the whole patient? Now we have to see too many specialists, too many rules, too many cooks spoiling the broth. Communication is only going to get worse.
  • Linda
    My vote...would be just tell me the truth and then move on with the best treatment. When you have cancer there is often a lot of suffering involved. I just need an honest and open relationship with each Doctor. The problem is doctors are so overworked with so little time. Just continue to be the great doc that you are.

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