Archives for posts with tag: shared decision-making

1. Catch me at noon at NYU talking ab13315479_10154279615769711_1999091312233455447_nout uncertainty and shared decision making.






2. At 6:30pm 13320987_10154278145634711_5657150635582954309_oat the Sidewalk Bar and Restaurant at 6th and A in Manhattan I’ll be reading from my new book, Making Sense of Medicine. This is part of the Prose Pros reading series.


I saw a woman yesterday making a decision that might lead to her death, and I feel powerless to stop her. I cannot talk about her in detail. Her gastrointestinal tract is not working – it is putting out too much. Her body thus is deprived of functional fluid in the blood vessels, which makes it difficult to supply the kidneys, and their filtration is failing. She is wobbling, has fallen several times.

Medicines might decrease her output, or supplement her diet with the nutrients her body cannot retain. But she thinks they harm her.

Surgery might help repair her gastrointestinal tract to absorb the nutrients she is losing, which might help her kidney function. But she is afraid surgery will kill her.

Neither of these beliefs is completely out of the realm of normal. Medications are routinely prescribed for slim benefit and without due discussion of harms. Surgeons can underestimate risk, and surgery can lead to terrible consequences.

I think and write a fair bit about letting patients make decisions that are right for them, but every once in a while — and maybe more often than that — I face someone who is digging themselves a very deep hole. My nightmarish vision is that they are watching it fill with their own blood.

I laid out the options: she cTVA_Douglas_Dam_jack_hammerould take medications; seek the advice of the surgeon or other specialists. I urged her to keep the appointment with the kidney doctor. One option, I said, would be to admit her to the hospital to get her treatment with more dispatch; the other would be to find a facility where she could live more safely while still maintaining a modicum of independence.

None of their satisfied her. I imagined that she was encircled, entrapped by an impenetrable wall, and all the rhetoric, empathy, and understanding were thin reeds that broke into shards against the rough bricks. I felt like I was sitting and staring at her, willing her to change her mind, and I had no power. Rather, I do have power, and exercising it might be helpful, coercive, or both. Would that be the action of my best professional or humane self?

We parted with a handshake and a thank you for each other’s time.

She thanked me for giving her my expertise as a doctor, though it did not change her mind or course of action.

And I thank her for teaching me what I can be thanked for.

It’s time to register (free) for our Partnering with Patients conference, June 1, 2016, at Johns Hopkins. It’s open to all.

Please submit an abstract in any field related to shared decision making. Deadline May 1.


Partnering with Patients in Decision-Making: Continuing the Conversation at Johns Hopkins will take place on June 1st, 2016, from 8am to 5pm, in the Owens Auditorium in the Cancer Research Building. Open to all, this meeting will feature discussions of clinical, educational, and research approaches to decision making in the Johns Hopkins Medicine context, emphasizing diversity, interdisciplinarity, and the particular needs of Baltimore. Two keynote speakers with national reputations, as well as a poster session, will help make this a day to assess where we stand and move forward to enable change. The meeting is free of charge.

Our generous sponsors are the School of Nursing, the Patient Experience Office at Johns Hopkins Hospital, and the journal The Patient — Patient-Centered Outcomes Research, as well as the Primary Care Consortium. Institutional sponsors include the School of Medicine, the School of Public Health, and the Berman Institute of Bioethics.

Please respond to this poll to let us know whether you might attend and how you might like to be involved further.

Best wishes,
Zackary Berger, MD, PhD
For the organizing committee

I just got back from the annual meeting of the Society of General Internal Medicine. You should check out all the tweets.

Below is a poster that I presented there on how doctors and patients communicate in the hospital. Though the findings are limited and preliminary, I would welcome your comments!

How do patients and doctors communicate in the hospital? Assessing shared decision making and interpersonal…

Here is a talk I gave at the annual meeting of the National Physicians Alliance on October 20, 2013, in Washington, DC. The briefest version is this: Everyone talks about patient-centered care and realizes that our system is doctor-centered. How do we square the circle and get from one to the other? Patient-centered care is a mantra more often repeated than deliberated on and well defined. We must recognize that patients are unique individuals, and that the relationship between the primary care provider and the patient, a pillar of an improved system, must include all sorts of patients – no matter what their desired involvement in decision-making.

Cross-posted to the book blog.

At the International Conference on Communication in Healthcare, which I just returned from, there was a discussion continuously coursing beneath the surface and bubbling up every once in a while. If we – acolytes of shared decision making, whether patients or providers – want to encourage decision making that has the person involved at the center, recognizing their preferences and values, does the kind of decision in question have anything to do with the relevance of those preferences? Is it really the case that (as was said multiple times during the conference) there is “no such thing” as preference-sensitive decisions, for the reason that all decisions are sensitive to preferences? Everything – it was said in this argument – involves preferences, and countless decisions are made in the course of a day. Getting into the car to go to the doctor’s office is a decision. Taking a pill, or not, is a decision. Picking up the phone to talk to someone about your symptoms: that’s a decision too. So, the argument goes, to pick certain health care decisions as more “preference sensitive” than others is meaningless. Everything involves an exercise of wants, desires, and priorities.

I think this ignores the diverse uses of the term “decision” and the verb “decide.” Surely not all of the following are the same?

I decided to take an aspirin to reduce my chance of heart disease.
I decided to go to the doctor.
I decided to take a deep breath.
I decided to perform CPR on this bystander in the street.
I decided to forgo resuscitation if my heart should stop.
I decided to quit smoking.

It must be that these involve various shadings of the word decision, a different mix of voluntary, quasi-voluntary, outwardly imposed, and preference-sensitive action. If we are to further care that is consonant with peoples’ preferences, we should recognize that sometimes these preference are at the fore in a given decision (“I decided to walk 2 miles every week!”) and sometimes not (“I decided to take time off work to take care of my mother”). There are differences that should be recognized, and eliding them runs the risk of dismissing when preferences might actually be most important.

Reposted from January. The panel referred to is still meeting, and we are working on its final report. Stay tuned!

I went to a meeting of a panel this past week under the auspices of the Institute of Medicine. Called the Evidence Communication Innovation Collaborative [yes, I know], the group discusses a number of topics around the general ambit of communicating medical evidence to patients. We spent a lot of time, productively, on the topic of decision aids. A lot of people at the meeting really like them. (Here’s a collection of decision aids, which includes a short primer on what they are; the Wikipedia article is informative.)

I like them, too, and it’s not hard to understand why. Decision aids are the fuel of shared decision making. Information should not be concentrated in the hands of the doctor; rather, it should be presented to the decider – which we presume is the patient, the ordinary person – in a way relevant to them.

But they are not the panacea:

We forward thinking doctors know in our heart of hearts that decision-making should be shared with the patient; unfortunately, not all patients think that way. Some still rely on the physician to make their decisions.

Even the alternatives, and the risks and benefits attached to each one, are not so obvious without some thought. And that thought is not the view from nowhere, as a philosopher put it, but dependent on the point of view of the person thinking. The risks, benefits, and preferred alternatives depend on the kind of person doing the choosing. And who’s to say that a patient from one race, say, or economic stratum, will react to alternatives the same way as another?

Count me encouraged but skeptical: there were a lot of people in that room ready to share decision making. But a decision aid is only as good as the decisions it includes. We need to know a lot more about how people make decisions, and how they talk to their doctors, before we can expect such aids to do more than reproduce our current health care system’s inequalities and insensitivities.

Crossposted to Talking To Your Doctor.

I used to be a snob about people who didn’t vote because they couldn’t see themselves picking any of the available candidates. “But that’s your responsibility!” I would say to myself, self-righteously.

Thomas Hobson.

Then I became a doctor, and I began to realize that we provided these non-choices to patients all the time. Like today, for instance, when I asked a patient permission to refer her to gastroenterology for her fecal incontinence. (At least we talked about it – because she brought it up. Often times people don’t do even that much, a fact I discuss in my book reflective of the broader reluctance of patients, and sometimes doctors, to discuss sensitive issues.)

I asked, “Is that okay with you?”

Which is BS, really. I suppose it’s better than making the referral without discussing it with the person at all, but there’s no choice there. Even if I were to break down the possible alternatives – refer; take care of the problem just the two of us, me and the patient; kick the can of the problem down the road – how is the patient supposed to know what might be preferable? Heck, I’m not sure I even know.

This is what makes real-world shared decision-making so complicated. I don’t know what fraction of medical decisions are like the one above, but certainly a big chunk are. When the doctor doesn’t know what the right answer is, and the patient doesn’t know enough to have a clear preference (or no clear preference is possible), what can really be shared, after all?

Cross-posted to the blog at Talking To Your Doctor.

Let’s share the glad tidings: Johns Hopkins is again ranked as the number-one hospital in all the land. I’ve written about this before, sharing my misgivings about ranking hospitals. What is the methodology? How sensitive is the ranking to random error, bias, and qualities of hospitals that have nothing whatsoever to do with their – quality, like reputation? What are we supposed to do with that information, who really uses it, and do they get better care as a result?

There are enough misgiving here to fill several chapters of a book, and in fact one chapter of mine is devoted to them. But the problem with measuring extends far past the ranking of hospitals. Doctors are being ranked this way, too, with the idea that public reporting of such information will help people make better choices about their health.

At the same time, many are trying to urge our health care system towards greater patient-centeredness. Various research teams are developing measures to quantify how well a given visit with a physician enables shared decision making on the part of the patient-doctor pair.

So, when presented with an array of various numbers – the rank of the hospital; the quality of the doctor; and the patient-centeredness of the practice – which one should the patient choose? Do we ask patients, as a whole, which ranking they find more important? Is each person to mix up a batch of numbers to find whatever aggregate satisfies their preference?

These are big questions. As I outline in my book, there is evidence that precious few patients or doctors actually use these rankings. Perhaps if we include patient-centeredness in the mix, and automatically generate a weighted average (or some other statistical combination of measures) that corresponds to patients’ preferences, people will feel like they are getting the best doctor they can find. That would be something to truly celebrate.