QUALITY: Decision aids in the real world

Most of this morning at the FIDMD meeting has been largely technical stuff about setting up decision aids. Shannon Brownlee suggests that the name should be changed to “personalized medicine” which has been nicked by the bio-tech crowd for now.

There is progress in better patient information around systematically including patient preferences, values & desires at the point of care—particularly in prostate screening & breast cancer. (Good programs at Dartmouth, the VA local UCSF, Group Health of Puget Sound, and several other primary care programs in academic medical centers).I won’t bore you with the technicality of the decision aid methodology (because I didn’t understand much of it!)

All good stuff and all leading to the question, what happens when this starts to get mainstreamed because, (of course) better informed patients tend to desire less aggressive care? (Although interestingly there were actually several anecdotes about cancer surgeons & radiologists now pushing lumpectomy on some women who actually want the radical masectomy—so even when “do less” becomes the mantra it may not fit what patients want). But overall, this is a threat to the ability of patients to entreprenurially do what they want and get paid for it.

David Wennberg said it well— “be ready from the backlash from
organized medicine when this becomes better known”. And of course the
1993–4 experience of AHCPR being eviscerated by a coalition of back
surgeons, device manufacturers & Newt Gingrich in 1994 should be
still remembered by this group (Here’s Shannon Brownlee’s great article on it)

I’m a little troubled by the academic-ey notion of this group, while
the explosion in social media and Health 2.0 sites is looking at and
sharing ratings about the overall patient experience. So while these
very worthy folks here are setting up great programs, I really hope
that they’re being linked with the other aspects of what patients think
is great care. Increasingly that means basic non-medical stuff like —
being able to get an appointment easily on the phone or (gulp!
online!)a nice spa-like waiting-room, actually running the appointment
on time (e.g. not leaving a patient sitting for 3 hours in an
exam room as happened to a friend of mine in one of the AMCs presenting
here recently). That’s the kind of stuff that’ll be showing up in Yelp, Vitals, CareSeek,
RateMDs, Zagats et al. Whether the doc or organization used shared
decision making is actually more important in the end for sick people,
but probably not the part of the process people are going to easily
understand, and not something that will get them in the door.

So my hope is that the shared decision making piece of patient care
can be integrated much more strongly into that “better integrated
patient experience”. Because that patient experience is going
to be focused on by those entreprenurial back surgeons advertising in
the back of the airline mags. And my guess is that they’re not gong to
rush to using any decision aid that may help patients decide that
watchful waiting is the right course of treatment.

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  1. Shared decision-making is happening, at hospitals around the U.S. and in Canada. I wrote about it on my blog: http://www.healthbeatblog.org/2007/10/shared-decision.html and for Dartmouth Medicine: http://www.healthbeatblog.org/2007/10/shared-decision.html
    Research shows that when patients are given full information about the risks and benefits of an elective procedure (like a mastectomy, a knee implant, spine surgery or radiation for prostate surgery) or test (colonoscopy, PSA test for prostate cancer, etc.)
    20 percent to 40 percent decide not to go ahead with the procedure.
    There are international guidelines for what counts as “shared decision-making.” The patient is given videos of similar patients talking about whether or not they decided to have the procedure, why, and whether they are happy with their decision. They can take these videos home and watch and discuss with their families. They also are given pamphlets that very clearly outline the upside, the downside and the odds that the test or procedure will be beneficial or harmful.
    The patient then talks about what he has learned with a “decision-making coach.” The coach makes sure that the patient understands what he has read–particuarlly with regard to “odds” of X or Y happening–
    and helps the patient articulate his own priorities. What are his greatest fears? How much would he be bothered by possible side affects? How much uncertainty can he tolerate?
    The state of Washington has now passed legilsation which makes it much more difficult to sue a doctor if he has taken the patient through the steps of shared decision-making.
    Where shared decision-making is available it does drive traffic to hospitals and medical centers that offer it.
    I agree with m.g. –this a world of difference between “consumer satisfaction” and “shared deicison making.”
    Too often, “patient satisfaction” is based on trivial things that have little or nothing to do with the quality of care. For example, a patient may have to wait two hours to a see a doctor because the doctor was called into surgery, because earlier in the day what he thought would be a routine 20 minute visit turned into an emergency. Or maybe he just spent 10 or 15 minutes longer with each of 5 patients because they had questions.
    I once spent five hours listening in while the head of cardiology at a major medical center saw patients. All of these things happened except being called into surgery. One patient showed up, without an appointment, who had begun losing his vision in one eye that morning. A very bad sign. He needed immediate attentions.
    Another patient’s test showed that his carotid artery was totally blocked. In other words, he shouldn’t be alive. (The doctor was completely shocked). But there he was, sitting there, 85 years old, with a flock of his octogenarian relatives. It took a while to explain to all of them what was going on and why he needed immediate surgery.
    Then there was the CEO scheduled for a bypass in four weeks who wanted to put it off because he wanted to wait three months until the end of the golf season. (He had already collapsed on the golf course, which was when he was diagnosed.) He also wondered why he couldn’t have the surgery at a hospital near his home in the surburbs rather than at the medical center in NYC. “It’s so hard to park here,” he explained. “And it’s expensive.” I wanted to stand up and scream: “You’re having open-heart surgery! Hire a car!” Throughout all of this the head of cardiology was extremely patient, explained things 4 different ways until patients understood. How could he possibly predict how long this would take? Later, he explained to me: “They’re afraid. And when people are afraid, they’re often irrational.”
    Medicine is full of uncertainties and suprises. A three hour surgery can easily turn into a five hour surgery if the surgeon finds something he didn’t expect when he opens the patient up. This happens all of the time in general surgery. Every human body is unique–which leads to surprises.
    When I think of the “consumer” who thinks that the most important thing in medicine is whether or not the doctor is on time for his or her appointment, I think of Regina Herzfeld’s ideal “activist patient”– a baby-boomer, stamping her pretty little foot while saying “I want what I want when I want it.”
    These consumers don’t understand that there is a difference between healthcare and a pedicure.
    It’s a shame to waste money on amenities to please such consumers when we could be using those dollars to provide meaningful services like shared decision-making to patients.
    It’s true that there is bound to be backlash against share decisionmaking in some quarters. Some months ago, I was asked to speak at a medical association meeting, and when I told the PR person organizing the event that I planned to talk about shared decision-making, she went berzerk. However, the doctor who is the president of the medical association ultimatley supported me, and I went ahead with the speech.Another medical association in Texas has asked me to talk about it next month. So acceptance is spreading.
    Not all doctors are greedy. And not all are paid
    fee-for-service. Many recognize the importance of shared-decision-making, and they embrace it. It is also likely that more states will follow Washington’s lead.
    “Informed consent” has always been a joke.
    Shared decision-making could be part of the answer to malpractice suits.
    Patients need to understand that, as Jack Wennberg puts it, “any time you go in for elective surgery, you are making a wager” (a wager that it will do you more good than harm.) That’s why they call it electtive surgery. You have a choice. And patients need to have the opportunity to make an informed choice, rather than passively “consenting.” But that takes time. You can’t just give them a pamphlet and a video–or have them go on line and read some supposedly trasnparent information.
    The decision-making coach is a key part of the process. Like a counselor or therapist, he helps the patient sort out his prioities at a time when he may be panicky– “I have cancer! I’m going to die!. ” (As one decision-making coach told me, it can take some time to talk them down from the chandelier.)
    Finally, patients can’t “drive their own care.” They haven’t been to medical school. They haven’t seen hundreds of patients. An online crash course is not the same thing. Moreover, they are sick–and this means that they are not in the best position to make decisions about their care by themselves.
    The old saying about the doctor who treats himself having “a fool for a patient” is true.
    We don’t need “consumer-driven medicine.” We need
    “Patient-centered medicine.” And there is , as MG. says, “a world of difference.”

  2. Matthew’s got his finger on an important pulse: The power shift between clinicians and patients/consumers. And he’s right that although forward-looking physicians and organizations in the academic community are facilitating the shift through programs such as “shared decision-making,” they may still be caught by surprise when Internet-enabled consumers assert themselves. Just this morning, I read the following quote:
    “Through blogs and online communities, an enormous army of increasingly well-informed patients is forming, and we’re actually challenging the traditional model of health care in this country. With free access to all sorts of medical information, patients like me can drive our own care for the first time in history, by asking the right questions and demanding the latest and greatest drugs and devices. So ends the stranglehold of doctors and health insurance companies on information and treatment options.”
    The more these various communities learn about each other, the better for all of us. The less “stranglehold,” the better.
    The quote is from Amy Tenderich (DiabetesMine.com), in an article on Newsweek.com, which I found through a link on Paul Levy’s blog (runningahospital.blogspot.com).

  3. There is a world of difference though between patient satisfaction ratings and clinical decision aids. Like comparing apples and oranges.

  4. There is a world of difference though between patient satisfaction ratings and clinical decision aids. Like comparing apples and oranges.

  5. The keystone of the Health 2.0 idea is the sharing of knowledge, experience and a helpful understanding of the patient experience with those who need the information the most, potential patients.
    I am thrilled that our world is evolving and accepting their rights to a better integrated patient experience.
    With websites like http://www.healthworldweb.com, these experiences can be shared, questions can be asked and patients can find doctors that are truly interested in their care.

  6. In regards to Shannon’s hypothesis of “overtreatment,” a good benchmark assessment of it in cancer medicine has been the use of modern pre-testing technology like the molecular-targeted prognostic tests. These pre-tests enable the physician to more accurately determine who should be treated and who should not be treated.
    Another needed change to the system will not be on the types of drugs being developed, but on the understanding of the drugs we have. The system is overloaded with drugs and under loaded with wisdom and expertise for using them.

  7. Very interesting. Thank you (as usual).
    The resolution of the key tension – “what happens when this starts to get mainstreamed because, (of course) better informed patients tend to desire less aggressive care?” – will be interesting to watch.
    My hunch is there’ll be a lot of PR and semi-bogus research involved.