Pretty much everyone chats up shared decision making these days. And that is good. It seems intuitive that people (patients) who are knowledgeable about their condition and buy into and/or help to shape the treatment plan are more likely to follow it.

Here is an example from my seatmate on today’s flight from SFO to our nation’s capital. Her son, let’s call him Alex, is a teen with cystic fibrosis (CF). Three weeks ago he was also diagnosed with Type 1 diabetes – this would be a double whammy for anyone, but has to be especially hard when you are 13.

Alex was already used to having to be careful about his diet and hydration because of CF and he manages to take his medications (17 different pills) and enzymes and other treatments on most days. But now a team of endocrinologists was telling him he would also need to administer four shots of insulin a day and have even more restrictions on his diet.

After he reacted with dismay, the doctors (to their credit) regrouped, and over the course of a few days, were able to present him with the opportunity to help design his therapy (insulin injections and diet) in a way that worked with his life and his desires. They acknowledged that he was the one that was going to have to fit diabetes into the type of life he wanted to live. They shared the decision-making with Alex.


Why isn’t shared decision-making standard practice?

So why isn’t shared decision-making standard practice? Well, we know that some docs really don’t want to do it. That was not how they were trained to practice medicine. I get that. When I was in  training, my classmates and I were told that we were the Captains of the ship and “the buck stops here” — “You’re in charge, boy.” Luckily, medical education is changing and newer physicians are learning how to be trusted guides instead of dispensers of “the truth.”

But even with the advent of easily accessible medical information on the Internet and tools to empower patients to be full partners in their care, some patients are still reluctant to engage in collaborative discussions with their physicians about their care? Why? Dominick Frosch and his colleagues at the Palo Alto Medical Foundation Research Institute, in a paper published in the May 2012 issue of Health Affairs, shed some light on this issue.

Their study involved focus groups with fifty patients from three primary care practices in Palo Alto – a wealthy suburb in the San Francisco Bay Area. The demographics of the participants were a bit unusual – 40% had incomes of $100,000 or more, 80% were college graduates and 46% had completed graduate school. Ninety percent were white, 62% female, and 65% were married or “living as married” (this is California after all.) The mean age was 65. These are not the type of folks you would think would have trouble going “mano a mano” with their doctors…but they did.

Using standard focus group research methodologies, the study team culled a number of major themes from the patients who were told they were to discuss communication behaviors necessary for shared decision-making. The participants expressed that they wanted to collaborate with their doctors in clinical decisions, but their ability to do so depended on their doctors.


Being a “good patient”

The study participants felt they had to conform to the socially sanctioned role of the “good patient.” They also worried if they did step outside those boundaries, they were in danger of being perceived of as a “difficult patient.” They feared that questioning or challenging their doctors’ recommendations would upset him/her and could lead to them getting a lesser quality of care. One patient, a 64-year-old man, put it this way:

“If I were to do that I would think…is the guy going to be pissed at me for not doing what he wanted?…Is it going to come out in some other way that’s going to lower the quality of my treatment?…Will he do what I want but…resent it and therefore not quite be as good…or in some way…[be] detrimental to my quality of care.”

A 49-year-old man said,

“You’re worried…you’re going to piss the doctor off,…[that] it’s going to change the relationship…I don’t want to rock the boat.”

Although these patients articulated that health care is a service, because of the perceived power differential between them, they ended up being deferential so that they wouldn’t “piss off” or disappoint their doctor. One patient went so far as to apologize for expressing an opinion saying,”

“I mean, I ended up apologizing, saying…I hope I didn’t upset you by saying I don’t want surgery. It isn’t that I don’t trust you or like you, I just need time.”

Imagine apologizing to any other service provider, including others that are highly educated professionals, such as lawyers: “Oh, I am so sorry I asked you to change my will…it’s just that, well I don’t really like my great nephew anymore. So sorry for the inconvenience.” Hah! Not happening.


Authoritarian doctors

Another theme was that some doctors are quite authoritarian making it difficult to have a two-way conversation where your opinions are heard…and respected. A 69-year-old female patient put it this way,

“It’s difficult to fight a doctor…You have to be really articulate and brighter than they are when you first enter the room and your start the conversation…”

Another woman, 84, said,

“I was brought up in the generation which…elevated doctors to a, a high throne in heaven someplace, and that’s just not true. I mean…they know what they know and..there’ a lot they just don’t know.”


The Information (and Time) Gap

Participants reported that they researched their conditions before and after the clinical encounter, using the Internet, talking to other patients, and seeking second opinions. They did this, in part, because there just wasn’t enough time to spend with the doctor getting their questions answered.

“It seems to me everybody is in a hurry…and I begin to feel guilty about taking up their time, and…after it’s all over I ..think to myself, why didn’t I ask them more questions?”

They also had strategies to help optimize the time they did have with their doctors, particularly bringing someone else with them to the office visit:

“I’ve brought my husband with me on many occasions, and I’ve gone with him. He had prostate cancer surgery, and I wanted to be there ‘cause you can’t remember…unless you take paper and pen and write it down…and you feel rushed so you need two people.”


There is still a long way to go

So, although shared decision making is something that both doctors and patients say they want, we still have a long way to go to get to a fully functional shared decision-making model. This is not to point fingers at doctors or patients, but rather to acknowledge that many of came of age at a time when doctors possessed the knowledge and, therefore were given the authority, to make decisions for patients. Now that the Internet has democratized medical knowledge (as it has so many other aspects of modern life), the role of the physician will need to evolve, as one patient put it:

“…What I want them to be is my friendly native guide through this jungle of decisions and a full partner in executing that decision.”


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