Does shared decision making really increase health costs?

In the business of medicine, one of the brightest hopes is the potential for re-optimizing our spend around what patients want. That’s important because decades of research in the field of shared decision making have shown that when there’s a range of options to treat a condition, informed patients choose less spending and less invasive treatment.

That’s a good thing.

Unfortunately, the University of Chicago press release for a new study released in JAMA Internal Medicine botches the headline, which has already (at this writing) resulted in thousands of pages parroting, verbatim, something the study doesn’t say. The false headline:

“When doctors and patients share in decisions, hospital costs go up”

The study didn’t even look at what happens when decisions are shared. If press releases had licenses, this one’s should be revoked:

  • The study measured attitudes, not what happens when decisions are shared.
  • Contrary to the headline, the study did not claim causation; it reported a possible correlation (“may be associated with”). Any student of statistics knows that a correlation doesn’t prove cause and effect; this headline is wrong.
  • It creates an impression – no, it explicitly states – that patient engagement increases cost, contrary to all prior evidence. That is, simply, bad journalism.

Bad timing and misconstrued sequellae

The study was released on a Monday holiday (Memorial Day) – the journal’s usual weekly schedule. By 9 a.m. Tuesday, thousands of sites and media outlets had already posted it, with no critical analysis of the study itself – reporters only saw (and often parroted) the press release. As Health News Review has often reported, that’s sloppy reportage, and it can cause real harm.

Careful writing is important for many reasons, not least that intelligent but hurried reporters will trust the presser, resulting in a cascade of secondary damage. Example: as I write this, if you Google shared decision making costs the top result searchers get is this:

  • Modern Healthcare: “Shared decision making may spur higher costs, longer hospital stays: researchers”

That’s a weak conclusion: the study’s own data, published in its Table 1, only reports a correlation. There wasn’t even any attempt in the study to compare what happens when decisions are or aren’t shared; they didn’t even report on whether any decisions were shared in the 21,000 cases studied.

Note, too, that “may spur” does not match the heading’s blanket assertion that it does. It’s a claim not supported by the evidence.

Misinterpreting prior literature

But do relevance and accuracy matter?  I know a bit about SDM (shared decision making) but I’m no expert, so I asked some.

One of the world’s leading authorities is Mike Barry, MD of the Informed Medical Decisions Foundation, whom I first met when we attended a Salzburg Global Seminar on SDM in 2010. In addition to his work at IMDF he’s past president of the Society of General Internal Medicine and is currently medical director of the John D. Stoeckle Center for Primary Care Innovation at Mass General. (Innovation’s a good thing, too.) He points out:

  • SDM is about preference sensitive decisions, such as whether to go in the hospital for elective surgery; it’s not used in cookbook situations (“guideline-driven”) like “for pneumonia, use antibiotics.” Most patients in this study were already hospitalized for conditions that have well defined treatments, so the population wasn’t even relevant to SDM.
  • On the issue of costs, he notes that the costs of care for a population tend to be driven more by hospitalization rate than the cost per hospitalization. (SDM is largely about whether to enter the hospital – the hospitalization rate; this study involved only patients who were already hospitalized.)

For both reasons, the headline’s assertion that SDM increases costs is simply wrong; Barry agreed with my suggestion that it’s inflammatory. In fact, the study itself notes that “the results of this single-site study may not be generalizable outside of the urban, largely African-American population we studied.”

Speaking of which, a paper at this month’s big oncology conference noted that, astoundingly, 20% of patients with metastastic cancer receive no treatment at all, and the effect is associated with race and income. I imagine that if those patients got their preference, spending would indeed increase.

Jumping to, and spreading, a harmful conclusion

Perhaps the writers of the press release didn’t study the study, or don’t understand the rules of inference. In any case, the harm is done: the false headline is out there and being widely reported, leading to the idea that the voice of the patient should be suppressed or costs will go up.

I’m sure it’s coincidental that this mimics what happens in political campaigns, when one side spreads a lie and then retracts it but the claim persists. In any case, the people I know in the patient community are incensed at the idea – unsupported by this study – that their voices may need to be squelched, lest costs go through the roof.

Does shared decision making really increase health costs?

Historic rise in medical spending (Source: KFF.org)

The truth is that listening to advice from people in the industry has led to the inexorable cost increases we’ve seen. In contrast to that, the Institute of Medicine itself (the pinnacle of academic medicine) says in its landmark report Best Care at Lower Cost that in order to fix our medical spending we need a “continuously learning health care system,” and one of its pillars is “Engaged, empowered patients” – the system should be “anchored on patient needs and perspectives.”

I’m hoping the many reporters who were misled by the press release headline will be able to publish clarifications about what the study actually showed, and what medicine actually needs. This is an important subject, as indicated by the IOM’s interest, and this headline is already causing damage that could affect policy and may take years to clean up. Let’s start now.

p.s. Before writing this, in an effort to engage, I wrote to the author of the press release requesting a correction. He replied that he believes the study does indeed support what he wrote. What do you think?

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

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  • ePatient_Dave

    Thanks for posting this, Kevin. As we’ve discussed in the past, I’m not just concerned about the role of the patient (though that’s my main focus in my work); I’m also concerned about how society feeds information to clinicians and policy makers.

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    Howdy Dave, I think the study itself and its authors are not really at fault here. First of all the actual title is “Association of Patient Preferences for Participation in Decision Making With Length of Stay and Costs Among Hospitalized Patients” – association does not mean causation.
    Second, note that the study found that a whopping “96.3% of patients expressed a desire to receive information about their illnesses and treatment options”. These to me, are engaged and participating patients.
    Finally, we need to come to grips with the fact that one form of decision making is to decide to trust your doctor to make the best decision, and this is not the first study indicating that the majority of people prefer to delegate clinical decisions to the experts they hire for this purpose, i.e. doctors. They should have the right to do so, particularly when they are very sick and possibly frightened, which I assume most people in hospitals are.

    • ePatient_Dave

      Hi Margalit – great to see you!

      > I think the study itself and its authors are not really at fault here.

      That’s what I said, yes? The problem is the disconnect between what the study actually measured, what the paper said, and what the *press release* said (especially the headline). Yes?

      (For the record, in my own near-death treatment, I accepted most of my clinicians’ advice, but you’d best believe I was thinking for myself the whole time, checking with other patients, etc. But that’s not related to this post, which (as I said) is about the headline not being supported by the evidence in the study.)

  • http://www.thehappymd.com/ Dike Drummond MD

    Great post Dave. Your outrage is well placed and you must remember you are talking about the way the press reports a study result. They do that with a headline that is meant to grab attention and get you to click (if it is on the internet). Often the “spin” is pretty obvious and does not necessarily have to be directly related to anything in the study.

    The researcher doesn’t write the headline, the reporter – in a life and death battle for eyeballs – does. You ask “do relevancy and accuracy matter”? The answer is no .. which is why I am glad you dug deeper and posted this article.

    One quick observation about the whole shared decision making subject. There is only one person in charge of the decision … it is the patient. When they are back home deciding whether or not to take the medication or keep the appointment … that is the decision point and they are the only one in charge at that critical juncture. Our job as physicians is to help them choose with all the information they want/need/require at hand. We are trusted advisors … not drill sergeants giving orders and we are never, ever in charge of the actual decision.

    My two cents,

    Dike

    Dike Drummond MD
    http://www.thehappymd.com

    • http://onhealthtech.blogspot.com Margalit Gur-Arie

      I disagree Dr. D. The decision point precedes what you describe, which is a secondary and ongoing process of deciding whether to stick with the decision and follow through or not, i.e. adherence.

      The decision point is, for example, do I have surgery or do I have PT. A minority of patients will want you to inform them on all aspects of both options and then pick one themselves. The vast majority will want you to inform them on all aspects, and then ask you to pick whichever one you think is best, or whichever one you would choose if you were in their place.

      I think the article suggests that the minority that likes to pick their options on their own, is not necessarily picking cheaper stuff than the doctors would pick for them. I am not at all surprised by that, and I think the assumption that well informed patients (particularly well educated and decently insured ones) will pick less expensive treatments is probably unfounded.

      People should have the right to pick a course of action, and should be given that option every time, but when they pick that extra MRI, we should accept that (I believe that’s what Dr. Berwick said). This should not be about saving money by “guiding” patients to cheap care. This should be about patient centered care, assuming the term has any meaning left in it.

      • http://www.thehappymd.com/ Dike Drummond MD

        Hey Margalit,
        If you allow your relationship with a patient to be one where you make the decision for them – “what would you do if you were in my shoes” … that is a boundary issue and not shared decision making.

        And you can use the words “adherence issue” if you wish, but if the patient does not follow through … they have Un-decided what you thought was a decision in the office.

        When it comes to healthcare decisions … the patient is always in charge and in the healthiest arrangement … we are a trusted advisor, shoulder to lean and a source of comfort when comfort and understanding is all that can be given.

        Dike
        Dike Drummond MD
        http://www.thehappymd.com

        • http://onhealthtech.blogspot.com Margalit Gur-Arie

          I think you’re more than that, Dr. D. I think you are an expert advisor, hence your opinion counts more than mine. No matter how smart, motivated and educated I may be, I should give your opinion more weight than mine, since, presumably, it is based on expertise I don’t have. It’s the same with lawyers and accountants…. I can inform you on what my preferences are, of course, but ultimately in most cases, you (or the payer) are the one making the real decisions, because you are the one with the power to prescribe, refer, order…. etc.

          Perhaps, it shouldn’t be that way, and for a minority of well to do individuals it isn’t, but for most folks, it is, it was and I suspect it will be more so in the future, if we are to cut costs. Not that I like it, or support it, but that’s how things are. A Medicaid patient cannot just “decide” that he wants a fancy brand name drug that he can take once a day instead of three times, or a transplant, or whatever… So there is a certain level of, uh, hypocrisy, when we say that patients should be the decision makers. Maybe patients with money…. or maybe patients brainwashed (“educated”) to ask for cheap stuff….

          • http://www.thehappymd.com/ Dike Drummond MD

            No hypocrisy Margalit … just an acknowledgment of your intellectual observations above juxtaposed to the real world where patients make the decisions. I am not talking about medicaid patients deciding they want drugs that are not on the formulary for gosh sakes. That is a silly example and one that could not happen.

            I am talking about what a patient chooses when it is time for action on the treatment plan — do they take the pill, not light up the cigarette, not take that last half of a cheesecake and stuff it in their face or put on their seatbelt (or not).

            At the point where action is required on the part of the patient … and it may be something as simple as keeping that appointment for chemo … the patient makes the choice to act in alignment of what we recommend or not. They are in charge.

            If you really believe you have the power to decide for the patient and they will then follow your “orders” to the letter … if you really believe you have that influence over their decisions and/or actions – then why are there fat, diabetic, smoking people out there who don’t wear seatbelts. BECAUSE THEY CHOSE NOT TO LISTEN TO YOUR ADVICE … just another example of who’s in charge.

            We are advisors … we hope we have influence when it is time for the patient to act. You cannot take responsibility for a patient’s actions. If you overestimate your godlike power to force their compliance … you will just fry yourself and alienate your patients.

            Dike
            Dike Drummond MD
            http://www.thehappymd.com

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Yes, but this implies that the treatment plan was already made. Patient can choose to adhere or not, effectually invalidating all plans. That is not usually what people refer to when they say “shared decision making”.

            Who decides on the plan? To stent or not to stent, to operate or to try PT, to have an MRI/CT or not, to treat prostate cancer or not, this statin or that or none, see specialist or not…. etc. etc. etc.
            I think it’s your job to tell me what’s best for my situation, and in most cases if I disagree, I can’t go and get my own stent put in.

          • http://www.thehappymd.com/ Dike Drummond MD

            Rise up to a strategic viewpoint here Margalit … “adherence” is a decision … a decision the patient makes … not the doctor.

            I suggest we help the patients make decisions in their own best interests by giving the best advice possible. Then know that they are in charge at that point. The whole conversation around “shared decision making” is so paternalistic and does not reflect reality … never did and never will. The patients are in charge. They will decide what they will and won’t do. Hell, that’s the basis of informed consent.

            Doctors giving orders and patients blindly being compliant was never a reality.

            Dike
            Dike Drummond MD
            http://www.thehappymd.com

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            I think we’re talking about two different things, Dr. D. I don’t disagree with anything you are saying… :-)

          • southerndoc1

            Unless there’s a court order or the patient is in a coma, is there really such a thing as “unshared decision making?”

      • southerndoc1

        “when they pick that extra MRI, we should accept that ”
        ???
        when they pick that extra . . . script for Oxycontin, for coronary stenting for non-occlusive disease, lumbar laminectomy for non-radicular pain?
        Does “shared decision making” mean that the doc just does whatever the patient wants, and really isn’t involved in making any decisions?

        • http://onhealthtech.blogspot.com Margalit Gur-Arie

          Well, it is a complex question, isn’t it? People throw the “shared decision making”, the end of “paternalistic” doctors, and just recommending, but not deciding, stuff around, but when push comes to shove, it is pretty obvious that the entire thing is largely impossible.

          What portion of decision making is shareable? Should we share as long as no harm is done? How do we define harm? How about risk? What level of risk constitutes harm? Should we pretend to share but only if a cheaper choice is made? Is this ethical? Can manipulation be avoided?
          My point about the MRI cannot be generalized to anything and everything. It is just a stand in for what if the patient picks the more expensive option.
          I believe the current propaganda about “shared decision making” is purposely not addressing this issue, because the intent is to bombard people with decision aides and tools until they pick something cheap.
          To me, the study from U of Chicago is clear validation that patients who are willing and able to choose, will tilt the balance to more stuff, probably to minimize their risk as best they can. And I think that people should not be denied the right to do just that.

          • southerndoc1

            Thanks.