I recently moderated an exciting Shared Decision Making: Patient Perspective twitter chat (#SDMchat) hosted by the Informed Medical Decisions Foundation.
Shared decision making is hot right now. As an advocate for policies that support people's engagement in their health care and a veteran of several serious illnesses, I support SDM. But I have at times found it hard to align the neatness of models of shared decision making that exists in the literature and the warm environment of the conference room with the cold reality of the exam room.
When I saw the Cohen Brothers' remake of True Grit a few years ago, I was reminded of the "grittiness" required of both patients and their doctors to engage in the difficult process of wrestling with conflicting research, challenging test results, variations in treatment results, and so on. Here is what struck me then...and still moves me now...
In the Coen brothers remake of the 1969 movie True Grit, Mattie Ross, an intrepid 14-year-old, is determined to hunt down and kill the man who murdered her father. To accomplish this, she hires U.S. Marshal Rooster Cogburn, (played by a mumbling Jeff Bridges) a rough, one-eyed veteran of many such quests then announces that she plans to come along. She figures she is prepared.
After all, she and her father had gone "coon hunting last summer... We sat around a big fire and Yarnell told ghost stories. We had a good time."
Rooster retorts: "Coon hunting! This ain't no coon hunt, it don't come within 40 miles of being a coon hunt!"
And Mattie fires back: "It is the same idea as a 'coon hunt.' You are just trying to make your work sound harder than it is."
This exchange sets the tone for their testy relationship: Mattie is determined to participate in avenging her father's death and confident that she is capable of doing so. Rooster is exasperated by her naivete and impatient at having to slow down to consult with her about how to counter each new threat they meet.
On the second day of their journey, the pair comes across a dead man hanging from a branch high above the trail.' The man may be a member of a gang who could be a threat to their quest, but he's dangling too high to identify, so Rooster tells Mattie "Well, you are going to have to clamber on up with this knife (and cut the rope). I am too old and fat."
At this moment, the gravity of what she has undertaken hits her. Her eyes widen. She glances around, clearly terrified. Rooster was right. This journey is not just like a coon hunt. It dawns on her that she could be hurt or killed; that Rooster possesses vast expertise and experience about how to approach the dangers they face that she lacks; that they are now dependent on each other for their safety and for achieving their goal. This realization weighs heavily on her.
Many of us take Mattie's attitude at the beginning of her journey when we are asked whether we would like to share in our clinicians decisions about our health care. We think it's a great idea. How hard could it be? However, when actually faced with sharing specific health decisions about treatment for cancer or heart disease, many of us defer to our physicians.
Participating in sharing specific decisions about our health care is sobering. Like Mattie, it suddenly dawns on us that the stakes may be high: our health and quality of life are at risk. Like Mattie, we realize that by contributing to the decision, we assume some responsibility for the outcomes. Like Mattie, we suddenly see how little we actually know and how poorly prepared we are to make the right decision. We may lack the information we think we need; we may not understand what information we have; we may feel too ill or upset to think clearly. And like Mattie, we are confronted with the fact that regardless of the strength of our determination and commitment, our efforts may not succeed.
Imagine finding out you have been diagnosed with aggressive prostate cancer after collaboratively deciding with your primary care clinician to skip your PSA test for a couple years. Imagine realizing, too late, that the diet and exercise now required for full recovery from your back surgery should have been your first choice of treatment instead. Imagine deciding whether to undergo one more fertility treatment when your chance of success is low and the financial, physical and emotional costs are high. It is uncomfortable to contemplate the uncertainty that comes with such decisions and even less comfortable to feel responsible for them.
Many clinicians share Marshal Rooster Cogburn's attitudes about bringing us along for the ride. For busy professionals, the idea of slowing down to explain treatment options for a serious condition and consult with us about that decision much less to discuss each new prescription or screening test produces exasperation and irritation similar to Rooster's. Ninety-five percent of primary care physicians report that a major barrier to shared decision-making is that there is not enough time for detailed discussions with patients. The time pressure increases when patients bring information from the outside to discuss. Among the 78 percent of providers whose patients do this, three-quarters say this takes even more time and 40 percent say it makes their job harder. It is then undoubtedly vexing when, even though we have been informed, asked questions, and agreed with our clinician on a plan or treatment, some of us change our minds or don't follow through. Like Mattie, many of us seek to maintain our independence, doing the best we can to make the right decision for ourselves as we go along.
True Grit ends in a series of complicated maneuvers involving the shooting of many guns, the killing of some people, a tumble down a cavern, a snakebite and a heroic dash by Rooster, cradling Mattie in his arms in an effort to save her life. Which he does. In the end, Mattie's father's death is avenged but doing so requires an all-out effort by both Mattie and Rooster. Neither of them could have done it alone.
Shared decision-making in medical care is rarely as exciting. But it can be just as gritty. Despite our common aim of improved health and functioning, it is not easy task for any of us patients or clinicians to disrupt our long-held habits and assumptions about how each other thinks and acts. And it requires gumption on both our parts to truly engage in sharing both in decision-making and in taking responsibility for outcomes of those decisions. The growing number of choices patients have about screening and treatment and the trend toward "empowering" us to participate in our health care put pressure on all of us to do more.
Neither doctors nor patients can do this alone, but even when we agree on the goal, as Rooster says, "This ain't no coon hunt."
This post was originally published March 23, 2011.