I usually write from the perspective of a lung cancer expert, but for one day and one post, I’d like to step out and speak from a patient advocate perspective.
Though I spend a lot of time producing online content for patients and caregivers, really to enable patients to know enough to participate actively in their own care, I have confidence in what I know in caring for my patients and in the skills of the colleagues that I happen to work with. Probably because of that, I have had the confidence that other physicians know what they’re doing and will do a good enough job that I myself have often played the role of the historical “good patient” or “good caregiver” — in other words, I’ve assumed that any referrals were to a very good person and that they would do a great job. Unfortunately, I was reminded in the course of my wife’s medical care that not playing an active role can come back to haunt you, which is something I want to always remind myself of when the time comes that we need medical care and the stakes are very high. So a bit of background:
A few years ago, I and my family were having a nice reunion with some of my medical school friends on the east coast, when one who works as an endocrinologist noted that my wife had a visible thyroid nodule (she never quite leaves work, I guess). After the appropriate workup, it was found to be a thyroid cancer, which is certainly always of some concern but is extremely curable. She went through the typical channels and saw an ENT surgeon who was supposed to have a lot of experience in doing thyroid surgeries, and I didn’t try to second guess her referrals and didn’t reach out to colleagues to find an expert. Unfortunately, her surgery was complicated by the loss of not only her thyroid but also her parathyroid function, and the latter is a real pain. She went from being healthy, energetic, and on no medications to less energetic (though fortunately easier for me to keep up with, I suppose) and on multiple pills throughout the day, requiring doctor visits, and with some real uncertainty about the potential ramifications over what we hope will be decades of follow-up. And we’ve only heard from friends and colleagues who know more about thyroid surgery that while this complication is known to possibly occur, it almost never does. And the folks I now talk who care for thyroid cancer patients in my community don’t seem to object to the musing that this particular surgeon might not have been the best one for the job, even if they try to be diplomatic about that.
I don’t know if she’ll have any long term negative consequences, except for being reminded of this problem 2-3 times per day for the rest of her life. I don’t know with certainty that this complication wasn’t just due to happen once in a while to anyone, and that the risk wasn’t greater with this surgeon. But I feel haunted by the thought that I followed the path of least resistance rather than advocating actively to find the best person for the job. And I do realize that nobody has an easier time finding the best people in health care than someone already working in the field.
To be constructive about this, I’m vowing never to take it for granted that the person referred or the treatment recommended by the doctor is the best choice, at least unless I know that I can have great confidence in the expertise of that doctor. I see too many patients who do less well than they could have because they receive suboptimal surgery for lung cancer or receive questionable (and by that I mean bad) advice from a doctor about their treatment plan. I minimized my wife’s thyroid cancer because I knew how very curable it was, and I presumed that there wasn’t a need to question the default path she was on. We were burned by that, and I can only be thankful that the cost of that poor judgment wasn’t life-threatening. But I won’t make that mistake again, and I’d definitely advise others to do their homework, find someone who is very experienced in what you need, learn from the docs who really manage these issues who THEY would send their family and friends to, but not to try to be a “good patient” by accepting any recommendation as a presumed good one.
I’ll return to writing summaries of lung cancer content next time.