Recently, a friend of mine was diagnosed with a very serious, potentially fatal, condition. His diagnosis was found to be in error by a second surgeon just in time to avoid a major and dangerous intervention. His story has led me to consider more deeply my obligations as a physician, particularly when asked for medical advice by relatives, friends, or their friends.
Like many of you, friends and family members contact me, explain their medical conditions, and ask my opinion about the plan or their physician or medical institution. My usual response is to listen, ask a few questions, and most often tell them that I don't know their physician or the medical institution, but that the physician's plan seems reasonable based on the limited information they provided. Or I say that I know of the treating physician or institution and respect their abilities concerning the condition in question. On occasion I recommend a second opinion at another medical facility to provide some assurance to the patient or the family. I emphasize that I cannot be their doctor, even if I had all the missing information, so can provide only very general advice.
First Conundrum
My first conundrum is when do I tell the patient to go elsewhere? Some cases are easy. In pediatric oncology, my own specialty, I know of virtually every program in the country, and in most cases I can assure them that the plan or the institution is sound. If the child has one of the more complex conditions that I believe might be handled better elsewhere because of the depth of services and experience needed, I may recommend at least a second opinion in one of the more robust programs.
When it comes to adults with cancer, which is by far the most common such situation I'm asked about, I take the same approach. I do not have deep experience in the management of those conditions, but I am reasonably well versed in the capabilities required for certain conditions. So I am back in the "common sense" advice mode.
It is often the case that the patient already knows what they want to do: stay put and be reassured; get a second opinion; or go elsewhere. Unless there is a clear indication to do otherwise, I support their inclination. I prefer not to tamper with their trust in the physician or institution without very good reason.
There is one circumstance in which I am more direct: When I feel I have a satisfactory measure of the patient or family member so that I can speak freely, I recommend palliative care and hospice care for a patient who clearly has had every effective therapy and the tumor consistently failed to respond. I emphasize that they are better off seeking the best quality of life for their sake and that of their families.
Second Conundrum
My second conundrum is how do I respond when it is clear that the patient has already received bad medical care?
I have faced that with several family experiences that involved small community hospitals, and the record has not been good (of course, we are more likely to remember a bad outcome than a good one). In those bad outcomes, the hospitals simply did not have the depth of expertise one would like, and they usually had few to no expert colleagues to consult. They may have tried complex surgical or technical procedures with little collective experience in their institutions. In one case, the diagnostic challenge was not complex or difficult, but was botched badly; that case follows.
Over 30 years ago my 70-year-old father-in-law was found to have a mediastinal mass. He was admitted to a small suburban Chicago hospital where a biopsy was performed. The pathologist called it a neuroblastoma-incredibly, a pediatric tumor in a 70-year-old! I was certain he was wrong, so I asked for the slides and sent them to an expert cancer pathologist; not surprisingly, he said it was a classical lymphoma. When this was pointed out to the physician and the first pathologist, they didn't seem to know what to do next. My father-in-law died having been misdiagnosed and not managed properly from the start.
A more recent example was my 40-year-old niece who almost died after surgery in a small community hospital. Her surgeon did a "routine" cholecystectomy via peritoneoscopy. The surgeon screwed up badly, leaving a field with bile leakage. Within a few days, she developed a serious intraperitoneal infection that led to septic shock, pulmonary edema, and over three weeks in the ICU. It took the surgeon and her consultants an unconscionably long time to make the proper diagnosis and to understand the true gravity of the situation.
My niece eventually recovered after a long rehabilitation period, but she was left with the permanent loss of substantial pulmonary function necessitating part-time assisted breathing. There was a perfunctory apology from the surgeon, who then disappeared; no one from administration communicated with the family. I told her she should sue, not for herself, but to force the hospital and staff to confront the incompetence. She declined. So her insurance paid most of the enormous bill, and the surgeon and the hospital got off scot-free.
I have written this column because these sad stories unfortunately are not rare. Of course, errors happen in larger hospitals, as well. My own sister had surgery at a large teaching hospital in Chicago. When she finally awoke, she appeared to have some cerebral damage based on a noticeable loss of intellectual function that was never recovered. This could have been anesthesia failing, though it might have been something else.
Published data have clearly shown that the positive outcome of a complex medical procedure (and not so complex as shown above) is far more likely with an experienced team that works well together and has ready access to the necessary expertise to handle any eventuality. Sadly, this "expert team care" is not universal in large facilities, but is far less common in smaller facilities that have smaller physician staffs, who largely work as individuals and are mostly generalists.
In all three cases I became involved because these patients were part of my extended family, so I was expected to provide some guidance (from a distance in each case) or an explanation of why things went wrong.
How aggressive should I be in calling into question the skills and experience of physicians I didn't know? I was made aware of these bad outcomes after the interventions had taken place and the process had moved on to "fix" the problem. The blame seemed to rest on the physician in the first two cases, but would it help the family to know that I believed the physician screwed up?
In the first case I did not press the error on my in-laws once I was sure my father-in-law was finally receiving appropriate therapy. In the second case, I urged my niece to sue to force some type of review of the surgeon's capabilities. In the case of my sister, I could not be sure her problem was due to a medical error.
So it appears that there is little one can do after the fact to try to bring serious attention to these errors. Unless some form of no-fault, independent review system is in place that acts to identify and assure modification of faulty practices, we are left with the much worse option of litigation. Litigation usually solves nothing. The deed cannot be undone, and punishing the physician or his insurance company does nothing to help identify and prevent, in a systematic way, more occurrences.
So my very best Christmas present this year was learning that my friend was alive and well despite the misdiagnosis of a very serious radiation-induced complication by one surgeon that was found to be erroneous by a second surgeon.
The good news is that the first surgeon referred my friend to the second surgeon because he felt the post-therapy "complication" was beyond his own management skills. So I send kudos and a Happy New Year to the referring surgeon, whoever he is.