This excellent NY Times Magazine article by Katy Butler describes the awful price paid by the Butler family when her father was given a pacemaker that kept him alive too long. The hospital, surgeon, and pacemaker manufacturer benefited by thousands of dollars. Her father was too out-of-it to make decisions about his health. His wife, who made the decision, was given too little information (not told of a much better alternative, not warned of the eventual outcome, which was likely) and, Butler seems to say, decided too fast. The pacemaker was implanted so that he could have a hernia operation — the hernia surgeon wouldn’t operate without it.
Butler’s article is excellent because it is personal, moving, and sheds light on a big issue that I rarely read about: the way “informed consent,” in practice, favors overtreatment. The patient or their representative makes the final decision, yes, but in most cases their decision is based mainly on information they’ve been given by their doctor or hospital, who benefit from one decision (yes, do something) but not the other (no).
The incentives for overtreatment continue, said Dr. Ted Epperly, the board chairman of the American Academy of Family Physicians, because those who profit from them — specialists, hospitals, drug companies and the medical-device manufacturers — spend money lobbying Congress and the public to keep it that way. . . The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits.
I liked Butler’s article partly because I’d had a similar, much smaller experience. I’m still pissed that during a discussion with Dr. Eileen Consorti, a Berkeley surgeon, of the costs and benefits of surgery to fix a nearly-undetectable hernia, she said nothing about side effects other than death. There are other possible bad effects of general anesthesia, which the operation would have involved. I complained to her assistant about her incomplete description of the risks. She didn’t respond, other than to threaten legal action (for not removing criticism of her for something else, I suppose).
Of course doctors, hospitals, and so on benefit from treatment. For me, the problem arises when (a) the benefits to patients are slight (compared to the benefits to the doctor, etc.), zero, or unknown or (b) the costs to patients are not well described. In both of these cases — the Butler family’s and mine — both (a) and (b) were true. Condition (a) is overtreatment, but Condition (b) makes things worse. If you propose to do something to me that could have an awful outcome, and from which you benefit, I would like to be warned of the awful outcome.
Dept. of Amplification. My original mention of Consorti was about how I couldn’t find any studies supporting her recommendation of surgery. She had said such studies existed. When I couldn’t find them, she promised to find them for me, but, several years later, has yet to. In the meantime, a reader of this blog found a relevant study (thanks, Kirk). Its results support my decision not to have the surgery that Consorti recommended.
Robin Hanson on doctors. How could we be this wrong about medicine? Thanks to Peter Spero.
As I tell everyone who will listen: Medical textbooks and journal articles are surprisingly accessible. You might need to look up some terms in a medical dictionary (or search for them on Google), but with a moderate amount of effort, an educated layman can grasp the literature.
If you have any concerns about your treatment, go to the library at your nearest medical school. The reference librarians are usually very helpful, even if you don’t have any affiliation with the university. You can also search PubMed (also called Medline) from home:
https://www.ncbi.nlm.nih.gov/pubmed/
When I was diagnosed with a parathyroid adenoma some years ago, I found out information that persuaded me to fire my first surgeon and change the course of treatment.
what i found noteworthy about the article was that 58 of the positive recommendations “were based on no studies at all, only a ‘consensus of expert opinion.” and most of those received financing from cardiac-device makers or worked at institutions receiving it.
“This pattern — a paucity of scientific support and a plethora of industry connections — holds across almost all cardiac treatments, according to the cardiologist Pierluigi Tricoci of Duke University’s Clinical Research Institute. Last year in The Journal of the American Medical Association, Tricoci and his co-authors wrote that only 11 percent of 2,700 widely used cardiac-treatment guidelines were based on that gold standard. Most were based only on expert opinion. ”
i can’t believe that this is an isolated phenomenon. it has to be duplicated relative to many medicines/procedures.
Seth, I think you are incurious about incuriosity (other readers may have to be curious enough to follow almost all of Seth’s links to prior posts and other comments in this post to see what I am talking about). The incuriosity you notice and deplore among physicians and other professionals is for you simply a betrayal of humanity – you note that all babies and young children are curious, and something happens to them – in school (as you like to cite Robin saying) or in med school. But surely this is too simple. First of all, there are huge differences in the kind of curiosity that babies and children are born with (I have seen a wide range of curiosity even among the five babies that my personal magnetism has caused to bring into being – if I were inventing a language I’m not sure I would have used a single word to describe the curiosity of each one of these people). Secondly, even if curiosity in the very young is a useful adaptation, isn’t it also the case for our species – which has existed in such widely different environments with such widely differing sets of competitors – that curiosity would be replaced with expertise – expertise which can, for most people, become adequate only by shutting down one’s other talents and interests? (If you have never come across the New Zealand anthropologist Peter Wilson’s book “Man, the Promising Primate” (1979, I think), you can see an interesting theory about the unspecialized nature of our species and how it has shaped us.) If Wilson is right, our species is good at nothing in particular, but through intense practice, individuals can become good through hard work at one thing, and relative neglect of others. Wilson’s insight was that the speech-act of “promising” – I’m going now, but will be back on the 6:45 – was the originating communication that established us as human, because it recognized that most of us must do two things badly – be a husband and be a salesman, say – rather than one thing well, enabling us to perform 2 or 3 roles at once.
There was a grain of truth in Aldous Huxley’s early account of the experience of what became known as “psychedelics,” that these drugs worked by destroying the filter between us and the assault of stimuli – and thus produced wonder and inutility (to put it mildly) at the same time. One needs incuriosity fully to realize one’s potential, as well as curiosity.
I have noticed that at a certain point in professional careers, for most people, it’s only possible to maintain excellence and expertise by shuttering oneself from external stimuli and shuttering oneself in. (Of course, I’m sure that in professional schools, this notion is promoted far too early to people who are far too young. And there are of course a few who need not do so.) Let me give a counter-example. Myself. I am far more curious about more things than most people – I too noticed this about myself when I was a university professor in my late 20s and early 30s, teaching students who became less and less widely interested. But when one has an essentially mediocre gift – as I seem to have -curiosity can lead one to fail or thrash about in many fields, rather than succeed in one. Fortunately for humanity, I can say that one thing at which I have never failed, because I never attempted, is surgery. But it seems churlish to complain that one’s physicians tend to be incurious when – according to the commentators on this blog – the best experiences as a patient with surgeons comes from docs who superspecialize in one sort of operation, and see one sort of patient.
I think that there is a kind of Hegelian Aufhebung of which people like, say, you are capable of – moving from wide curiosity, to special knowledge and expertise, to a higher curiosity. Whereas between, say, a lawyer friend who declared to me (to my shock and disapproval) at the age of 45 that his ambition as a lawyer was never to have to learn any new law – and who remains an expert in his field – and me, who has tried his hand at so much and achieved so little that is lasting (with the exception of my children) – the world ought to prefer consulting my incurious but expert friend when it finds itself in the particular kind of jam he is good at fixing, rather than me, most anytime.
In any case, I think you fix on villains rather than heroes. Overtreatment is bad, but it’s a luxurious kind of evil. Undertreatment or neglect is far worse. Whereas the perfect match between necessity and solution is a miracle.
Mellors, you’re right I complain about lack of curiosity in other posts — thanks for reading them. In this case, however, what the Butler family went through was to some extent caused by the mom’s lack of curiosity. Had she been more curious about other treatment options or about the costs of pacemaker implantation, she might have been saved a lot of grief. Here I’m defending the uncurious.
It would be relatively easy to knock your blog off the first page of Google results for “eileen consorti.” She needs to hire a good online reputation management consultant.
She needs to set up her own Web site, maybe at consortisurgery.com, and register it in various directories like Yahoo! Directory, Business.com, PR.com, and a few others. She also needs to register eileenconsorti.com, .org, and .net, and put some sort of genuine content on them. Having a domain name that is the same as a search phrase (minus spaces, no hyphens) will make ranking that website on the first page of Google’s search results easy, especially for a rare search term like “eileen consorti.” Maybe .com can be a secondary business site, .org can be an information site about various medical topics, and .net can be a personal site.
Then she needs to set up Twitter, Flickr, MySpace, LinkedIn, Facebook, and other pages in her name. She needs to join every professional organization out there that offers outbound links to their members’ websites. The BBB often does this, but it depends on the locality.
She could start a blog or write guest blog posts for others’ blogs. She could release press releases. She can write articles. She can give interviews to various media.
For some of these sites she needs to register them in directories, and there should be a certain amount of cross-linking among them (but not too much). The page titles need to be “Eileen Consorti” or that plus a few other words.
There are other things that she could do. It takes about 3 months to see the results. Once there is enough stuff online that outranks your site, it’ll fall to page two, and hopefully to page three. Few people look beyond page one of Google.