Overtreatment as Misdirected Love
Leave a CommentThe most moving moment of last week’s avoidable care conference for me was the story told by Diane Meier about one of her colleagues. The way she told the story was like one of those parables out of scripture, but her interpretation of it was utterly brilliant, and, I believe, completely correct.
An oncologist who had offered treatment after treatment and kept his patient going for many years now offered last-ditch intra-thecal chemotherapy to her for brain mets even though it would be a futile gesture.
When Diane asked him whether it would help her, he admitted it would not; when she then asked him why he had made the suggestion, he said that “Otherwise she’ll think I’m abandoning her”. However, after Diane’s gentle query he immediately dropped the plan, and the patient entered palliative care. Thereafter he stopped seeing her, and when the end was approaching and Diane informed him that the patient had been asking for him, he said there was no point to visiting, because he had “nothing to offer her”.
Diane’s point: We physicians are trained to order tests and order treatments – that’s what we do — we literally don’t know how to be with a patient except in that active doing role. When we show our concern, we show it by all the stuff we do to the patient.
This rings so true, since I know many colleagues who judge the strength of their commitment to a patient by how many tests they order, and how hard they chase obscure and unlikely diagnoses. At the conference, when we discussed the term “avoidable care” there was some debate. George Lundberg Howard Brody asked, if it’s avoidable, is it really care? And if it’s care, can it be avoidable?
Diane’s analysis shows that while it may be unnecessary and therefore may seem avoidable to us — to the provider, it most likely truly feels like “care”; care that is a vessel of a myriad of impulses, and the core sense of mission of the physician is probably one of them. That certainly would explain why many react with such anger and vituperation when we suggest that they may be performing unnecessary procedures — I’ll bet it feels that their genuinely caring selves are being attacked by monsters who would deny all sorts of “care” to our patients.
My own discovery of another way of doing things occurred when I was a junior resident at Hopkins on the bone marrow transplant unit. I was the lowest man on the clinical totem pole — and had minimal responsibilities. Everything was just too technical and experimental to let the likes of me enter the workflow. I was completely free of tasks after morning rounds, which made me feel redundant and useless at first .
Then I started spending the rest of the morning doing a second set of slow, unhurried rounds completely solo after the team had done the official, business-like first set. I would sit with the patients for long periods and talk about the treatment plan, the puzzle of their symptoms, stray lab values, and their family and social life. As I did that, I began to realize that I had stumbled upon an important role for myself. The patients and their families were desperate to talk to some medical professional, and despite my near complete ignorance about the technical issues of their case, I found myself in the midst of the most meaningful clinical encounters of my brief professional life. That was when I first realized that just by sitting and being with my patient I was doing something immensely important.
Diane’s point: we can train people to be able to sit with their patients and just be with them. It’s not a mystical quality which only rare people have. That capacity resides within us all, desperate to be of use to others.
And that is a reason to be very optimistic about avoiding avoidable care.
Elliot Fisher Goes to SCAI — this is gonna be interesting
From the Journal of Invasive Cardiology:
Dr. Elliott Fisher to Challenge Interventional Cardiologists to be “Agents of Change” at SCAI 2012 Town Hall Meeting
Conference Attendees Will Discuss Strategies to Reduce Costs, Eliminate Waste and Ensure Appropriate Use.
Kudos to the organizers for seeing the writing on the wall. Perhaps they can repair the damage to their professional reputation done by the hissy-fit they threw after COURAGE.
An amazing cast of characters cracked open a world with dizzying new dimensions
Whew!
This was a whirlwind week for me as the Avoidable Care conference finally happened. The roster of people was truly outstanding and the discussion was rich and lively. There were so many memorable moments that I will have trouble recounting them all, but fortunately we have good audio and video records to refer back.
Of the many highlights:
Bernard Lown saying he’s been waiting for this conference for 60 years.
Harvey Fineberg showing us the scale of the problem and a very useful analytic frame to look at it.
Don Berwick showing us the enormous possibilities of so many experiments going on to day: his key message: the time for pilot studies is over. we have to scale up and scale fast.
Daniel Hoefer showing us data about a program that reduced ER visits by over 90% — you heard that right — over 90%!
Diane Meier telling us a story about a colleague that blew my mind.
Shannon Brownlee reminding us all that the issue of avoiding harms done to patients by over treatment has to be a core ethical imperative.
Chris Cassel showing us the power of physicians when they stand up and take a firm, clear position in front of the public in a thoughtful way.
David Himmelstein pointing out that there are many bad ways to pay physicians and no really good way, but if we want to avoid greed we need to find mechanisms to disable it.
and so many more…
Judging from the comments and feedback from participants, where words like “amazing” and “inspiring” and “the best conference I’ve been to in years” are being used, it looks like we were successful. A nice reminder that in a media saturated Kardashian world, where the fluff has become the story, talking about things that really matter does move people.
From a modest idea to this remarkable result was just wonderful. Even at this stage in life, thankfully, I’m still learning — and in this case what I learned is that success requires perseverance and dogged detail work much more than it does the flash of a good idea.
Among bright people, good ideas are a dime a dozen, but value emerges from the application of effort over time.
When Chimps Think About Monkeys
Update: I changed the title from “When Chimps Think About Monkeys” to “When One Primate Thinks about Another” for fear of offending chimps, but then changed it back again when I realized I was self-censoring, fearful of the chimp lobby.
I rarely see a satisfactory caution on the part of the enthusiasts for genomic analysis, especially GWAS, regarding the broader meaning of their project nor its theoretical assumptions.
The story of social status in monkeys out today illustrates my concern. Simply put, a thousand genes change expression as social status in rhesus monkeys changes.
From the NYT article:
Dr. Tung and her colleagues were able to predict the social ranking of a female macaque with 80 percent accuracy simply by looking at the genes.
A question: What would the accuracy be if one looked at the monkey instead of the thousand genes? If you thought 100%, you get my point.
For some things, indeed, many,many things it is better to look at the whole organism than the genes. When I look at the millions of dollars that have been spent and will be spent searching for the silver bullet, undergirded, if not openly justified by the excitement of new scientific era, I realize how the silver bullet theory of medicine, which began with penicillin, has taken over our thinking. Undoubtedly we are in a new era — but it is so far mostly a technical achievement. The payoff has been elusive, and I suspect that is because our frames are not properly wide.
The secular decline in mortality from tuberculosis began long before we had effective drug treatment for this disease. In cardiovascular disease, the decline in mortality appears to be due in large measure to changes in lifestyle as well as to the many new treatment options, primarily medications, that have emerged in the last few decades. (All that stenting for stable angina doesn’t seem to have moved the needle, at least in the computer models of Simon Capewell of the UK).
Yet the hunt, Ahab-like for the magic genes, that will explain the obesity epidemic, continues. Don’t get me wrong: it’s not that I don’t think that genomic analysis doesn’t have value. It does. Primarily for uncovering undiscovered pathways and functioning as a flashlight shining into the thicket of proteomics.
But my hunch is that the era of silver bullet medicine has run its course. We need to better understand network theory and target network nodes inside the cell and inside the free living organism if we are to make progress.
But what better network node than the ensemble of genes we call a person? Sometimes a wholistic approach is about more than a touchy-feely humanism. It’s about thinking differently about natural science.
Radio discussions about Unnecessary “Care”
Last week I did a WBUR Radio Boston Interview along with Dr Christine Cassel. Here’s the link to the segment.
Chris is the President of the American Board of Internal Medicine. She is also going to be on Diane Rehm tomorrow with my co-convener of the upcoming Avoidable Care conference, Shannon Brownlee, and Eric Topol. I’m told Eric had more to say about the amount of unnecessary care that didn’t get into his quotes in the NYT story about the Choosing Wisely campaign. Looking forward to hearing the conversation.
A Reality Check for the Genomics Optimists
In the midst of the asynchronous debate between Kaul and Topol over at Cardiobrief, a serendipitous new article (via Twitter) at Science News supports my last post’s position with something invaluable: data.
From Science News:
The human genetic instruction book is as lousy at predicting disease as an almanac is at predicting the weather, a prominent cancer researcher concludes from an analysis of the genetic data from thousands of pairs of identical twins.
I have enormous respect for George Church’s scientific work, but I scratch my head when I read this:
But for the small number of people who do get a positive test result, such information could be very important. “Even if the majority of individuals will receive negative test results, you don’t know until you check,” says George Church, a Harvard geneticist and founder of the Personal Genome Project, an effort to catalog genomes and relate genetic variation to individual traits. “It is analogous to fire insurance. You don’t know in advance if you are in the majority who will not lose their house.”
Ummmm. Isn’t there a fuzzy Bayesian problem here?
Another Useful Debate at Cardiobrief: Genomics and Platelets
Larry Husten keeps mining rich veins of contemporary cardiology.
In this case, it is about a recent trial suspended without publication so far, which apparently showed no benefit to genomic profiling to optimize anti-platelet therapy.
Sanjay Kaul commented that: “personalized antiplatelet therapy using genotype testing cannot be routinely recommended at the present time”.
It’s surprising to me that an accomplished trialist like Topol would assert in response:
” ……. it should be standard of care to genotype individuals who are undergoing coronary stenting.
[ SNIP ]
The resistance to use genomic data to improve patient care is indefensible, and does not require “a trial with a sample size of 20,000-30,000 would be required to adjudicate the clinical utility of genotype testing.”
Kaul’s point that the number of endpoints for the problem most associated with the genotype in question (stent thrombosis) is going to be small and the necessary sample size large is not refuted at all by Topol. The practicality of doing such a trial is a separate (and important matter). Instead Topol cites a recent trial (RAPID GENE) that used surrogate endpoints. Should we have skipped ILLUMINATE? How would that have worked out?
There is a bigger theoretical issue that needs further airing throughout medicine. Given the relatively small number of “genes” in the human genome, given that much of the action in the growth and development of humans is going to be in genomic regulatory systems, most likely in the so-called silent regions, and given that so much gene-environment interaction is dynamic and manifest in the epigenetic profile of individuals, it would be no surprise that candidate alleles that look to be important therapeutic targets turn out to be neutral in the world of a randomized clinical trial, never mind in the complexity-rich, messy world of real life.
Strengths and Weaknesses of “Choosing Wisely”
I attended the briefing at the national Press Club today, and was impressed by the size of the crowd in the room. It was cool to see an actual press corps in DC. With health care such a hot topic this year, it’s not a surprise. I believe Daniel Wolfson of the ABIM Foundation was instrumental in putting the event together, and it was very well done.
Chris Cassel made the key point, also recently made by Don Berwick and Howard Brody, that attacking the waste of unnecessary care was an opportunity to cover more people without breaking the bank and without rationing necessary care. The numbers are staggering, and it really is the key to cost control. For the record, Bernard Lown has been saying that for over 30 years.
Moreover, it was impressive that so many specialties were on board, with many more coming. That shows that the leadership of organized medicine finally ”gets it” and is trying to make a claim to lead. For us at Lown, after decades of preaching this message, that aspect of this moment was extremely gratifying.
However, there was an undercurrent (at least to me) of a certain special pleading – “look we’re part of the solution, not part of the problem” — that raises questions about whether this effort is a tactical move that will dissipate once the heat is off or whether it will keep moving forward. Of course, the heat is not going to go off anytime soon, so my concern is probably theoretical. And since I tend to think the best of people, I don’t question the sincerity of the people in the room: I do expect this effort really is the start of a significant movement in American Medicine. But people are not organizations and there are sometimes tribal impulses that leadership may not be able to manage.
And there was a tone of the various specialty societies that the major part of this initiative was one of informing patients about the long list of tests to be avoided. While the sentiment was welcome, it sometimes came off sounding like it was really the patients who need the re-education, and vehicles like Consumer Reports would need to be enlisted to do some heavy lifting…
But let’s be clear: the lists really do represent the “self-confessed” inappropriate stuff. That’s easy. For instance the cardiology items are such no brainers that I was at first flabbergasted that these were even on the list. And the elephant in the room – unnecessary elective stents for stable angina — was described as being at a mere 14% rate. The reality is likely to be much higher — but that’s because huge numbers land in the “Uncertain” appropriateness class in the current version of the AUC.
Most thoughtful people know that physicians are and have been the critical drivers of care, both necessary and unnecessary, through the power of the pen in a volume-driven system which had no speed bumps for technology adoption, particularly tech that enhanced income and has a biologically plausible, if eventually bogus, rationale — think PA catheters. The drug and device industries have insinuated themselves into that ecosystem out of opportunistic necessity. Necessity being to maximize profits.
The answer to Shannon Brownlee’s question about what the societies intended to do to take this campaign to their membership in a meaningful way was not answered, probably because most of the items in question were carefully vetted to be non-controversial; the rank and file is unlikely to rebel. Sarah Kliff of the WaPo asked the same thing in a different way and again was not answered. Their questions implicitly criticized the lack of an enforcement mechanism, but I don’t believe there should be one, unless we want to turn physicians into algorithm wielding robots. But we’ll have Watson for that soon.
The truth is, guidelines and appropriate use criteria are used sparingly in practice. Occasionally, in a tough case. But there is such a guideline explosion, you need a guideline for the guidelines. I don’t blame practicing clinicians when they ignore them. If we are to tackle this problem seriously, what we need of our doctors needs to be baked into their (our) daily cognitive frames, habits, and attitudes. Hence our focus in the upcoming Avoidable Care conference on physician culture and behavior.
Still, judging from the media coverage tonight, this was an important first step in a journey of a thousand miles.
Off to Chicago for the ACC. Presenting an Abstract Titled:
“Long-Term All-Cause Mortality in Second Opinion Coronary Patients Managed with Optimal Medical Therapy”
Chicago — a big, sophisticated bustling city like New York, except filled with super nice mid-westerners… and then there’s Rahm….
Bass-ackwards: Doing the efficacy trial AFTER approving the invasive device
This from MedPageToday:
The FDA approved the Wingspan system in 2005 under a Humanitarian Device Exemption (HDE), which allowed the device to be sold without proof of its efficacy, only proof that it is safe and has a “probable benefit of efficacy.”
Following approval of the stenting system, the NIH funded a study to compare the stent with medical management. That study was published in the New England Journal of Medicine in September and found that aggressive medical therapy was more than twice as effective in lowering the risk of recurrent stroke or death than was stenting of narrowed intracranial arteries.
That trial — called the Stenting and Aggressive Medical Management for Preventing Recurrent Stroke in Intracranial Stenosis (SAMMPRIS) — was halted early because of the significant stroke and mortality rates observed in the stent arm.
I saw the study in the NEJM and noted the results, but I wasn’t aware that the device had been approved. This contrasts with the treatment of Aspect Medical’s anesthesia monitoring box, where the FDA required not just proof that it measured what the company said it measured (hypnotic depth), but proof of actual clinical utility in trials over several years. I don’t understand the reason for such varying policy. It’s not because the invasive device is less dangerous. Just more heroic?
And the fact that NIH had to fund this study is certainly in keeping with the spirit of the times: privatize the profits, but socialize the costs.
