True Grit and sharing decisions on health care with our doctors

In the recent 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 naiveté 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.”

Jessie Gruman is the founder and president of the Washington, DC based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.

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  • Gwen

    On the flip side, not engaging and empowering patients may decrease adherence to a treatment plan. Increased communications between doctor and patient could uncover information that may improve patient care. It shouldn’t be one way or the other. Patients need to be responsible for their lifestyle choices and health care professionals should actively engage patients – open communication should not cause feelings that “produces exasperation and irritation” – Healthcare should be an active partnership.

  • trina

    this is so timely for me. yesterday i visited my rheumatologist for the first time since experiencing two orthopedic surgeries, and DVT and a PE. while i was willing to try a new, aggressive approach to managing my RA before the surgery and health setbacks, i’m not as willing to be aggressive or to use drugs with life-threating side effects anymore. i’ve now experienced first-hand and up close a life-threatening side effect, and i don’t want anymore complications like that. the doctor chided me as if i were a non-compliant teenager and gave me analogies to driving a car (“if we all considered the risks around driving a car, many of us would never get behind the wheel.”) maybe so, but instead of driving a porsche, i think i’d rather have a hummer. so what if it uses more gas and doesn’t go as fast – it’s safer in case of an accident. i guess that’s just my “naiveté” talking.

  • jenga

    I use it as much as possible. It’s anectdotal, but I think it definitely helps from a liability standpoint. I think alot of lawsuits occur when a patient feels like they were talked into a treatment and they have an adverse effect. If they choose the treatment, they take some of the blame as well.

  • John Ryan

    I have mixed results with bringing my patients into the decision-making process on important healthcare decisions. I give them plenty of time, since I schedule a 20 minute (or more) conference for any significant problem or abnormal finding (yes, it is billable). Occasionally someone asks “what is your recommendation?” But very often these meetings feature competing agendas; my professional recommendations, versus printouts, pamphlets and the occasional uniformed friend or relative with an anecdote. There are a number of reasons that it often turns out this way.

    First, the knowledge base that even college educated adults have about their bodies is minimal. I blame this entirely on the pathetic state of science education in this country. Even postgrad engineers have told me that they had no human biology courses since middle school. I have a high school biology teacher who told me that he didn’t know that high doses of non-prescription vitamin products sold in so-called health product kiosks at the mall can be toxic (he had gynecomastia from vitamin A).

    Also, the sources of information available for the internet generation are largely either unfiltered, inadequate or bogus. The televised news media loves to feature the extreme, the gruesome, and the medical miracle, with the balance toward shock & awe, not information. The web is full of sites supported by commercial interests, disease specific message boards run by activists or people with an agenda. Looking at the NIH, Hopkins or Mayo Clinic sites for a specific condition or complaint, then the “disease huckster” sites (or even the well-intentioned support groups), there is a clear difference to a concerned patient. The medical organizations are cautious and general, while the non-establishment sites are populated with specific recommendations, endorsements and anecdotes of success with some method, diet or product, laced with the stories of physician incompetence or worse. Are these real stories? Undoubtably some. Are these helpful? Almost never. Why are people who are hawks on eBay so gullible on medical community boards?

    The reputation of physicians has also fallen in the eyes of much of the public. Stories of rogue physicians, wrong side amputations, etc. are regularly front page news, with no perspective of the significance, or reference to recent gains (in patient safety, for instance). Our local medical association has tried to provide such information to journalists, with little interest. “If it bleeds, it leads”.

    Finally, the attitude that Dr. Gruman so accurately portrays (“you make it sound harder than it is”) is, unfortunately, so true. Why do patients think that they can convince their physician to change years of medical training, education and experience after reading their printout of the melaleka.com website? Why does the contrived medical magic on “House” seem valid when my (harder to accept) facts won’t? A logical person would assume that the opinion of someone who has knows you personally, has physically examined you, and explained the analysis, has more weight. So please have some insight when I discount your unfiltered research (after looking though it respectfully). And please at least use the same rules you’d follow when you look for an opinion on buying a new TV.