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Patient as 'Captain of the Team'? Block That Metaphor

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You may have noticed an uptick in messages from your health plan or clinician notifying you that "You are the captain of your health care team." I have seen them here and here and here and here, for example.

My response to this message? Bad metaphor: I am not the captain of my health care team.

I may – on some days – consider myself a member of that team, should I actually be cared for by a team that I am aware of and that welcomes my participation. But I am not, nor should I ever be expected to be, the captain of it.

Why?

There are some minimum requirements that are expected of the captain of any team. Think captain of a basketball team. Think captain of one of the America's Cup yachts. In both cases, the captain should have a good sense of the team's specific purpose and be able to articulate how the team will address it. A captain should have the authority to allocate resources (personnel, money and time) to execute the plan. And a captain should be held accountable for making sure that all parties work together toward their shared aim.

How does that work for patients when we are appointed as captains of our health care teams?

Create a care plan. The purpose of a health care team is to apply the expertise of the assembled professionals to treating my disease, addressing my symptoms and helping me return to health. I seek help from them because I can't seem to shake off this illness or control my symptoms on my own. Yes, I have some expertise that can help the team achieve our shared objectives: my historical account, my sense of what is feasible and realistic in caring for myself, and my preferences for different approaches, for example. But I lack a comprehensive overview of what might be wrong, what can be done to fix it, and knowledge of the risk/benefit trade-offs of various tests and possible treatments. As a patient – even with a chronic condition – it is doubtful that I can learn all this, remain current with scientific developments and create a plan for my team to follow. At best, if and when I feel well enough, my observations and preferences can help shape my care plan.

To expect me to learn about my disease and its treatment while taking leadership of a group of professionals whose expert help I am seeking shifts risks and responsibilities to me that I am unlikely to be able to fulfill, especially when I am ill.

Determine the tools of medicine that have the greatest likelihood of returning me to health. My clinician is trained and licensed to prescribe medications, order tests and recommend hospitalization or rehabilitation. Without her permission, none of this happens. It's unlikely that my doctor will, upon my directive, arrange for me to have surgery that she thinks I do not need or prescribe a drug that she knows will interfere with my other medications. Of course I have preferences about my care every step along the way, and the more those preferences are taken into account in my care plan, the more likely it is that I will stick with it. But because I have sought care from her, my clinician is responsible for doing her very best for me and, increasingly, is held responsible for the outcomes that result from her decisions. I doubt that she will transfer her authority as gatekeeper of the tools of medicine to me, a sometimes bleary, usually under-informed patient.

To expect me to direct my clinicians' decisions about the use of procedures, drugs, tests and other medical resources patronizes me and wastes everyone's time. All of us know that I have modest experience, little expertise and no authority in this domain; pretending that I have choices that I do not disrupts direct communication.

Coordinate my care among team members, specialists, test facilities and hospitals. One of my friends is a retired advertising executive. After two years of trying to help his adult daughter coordinate her care among various specialists, he hired a dean emeritus from a nearby Ivy League university medical school to coordinate communication among her physicians. After 18 months, the dean threw in the towel, citing a complete lack of cooperation by his former colleagues for his failure. I can relate, although on a less grand scale, as I arrange for the transfer of CDs for scans, remind my doctor when I am seeing a specialist to tell him why I was referred, schedule appointments and nag my health plan about pre-authorization. Can I arrange for my clinicians to communicate with one another directly? I can ask, though I have no leverage to enforce or even encourage, beyond my logic and, oh, charm. While we can and often must – even when a team is present – perform numerous care coordination tasks if we want our care to have value, most of what we can do is administrative. We have no authority to ensure that we are seen immediately by a busy specialist or that one clinician speaks to another about the results of a biopsy, for example.

To expect me to coordinate communication, information and appointments among all relevant institutions and professionals when I have little knowledge of how parts of health care interact with one another and no leverage to ensure this happens in a timely way is a set-up for failure, particularly because I must manage these complex administrative and interpersonal tasks when I am unwell.

Really. What are the chances that we patients are going to be the "captains of our health care team"?

I understand how professionals who are trying hard to implement patient-centered care might, in an abundance of enthusiasm, use this metaphor to encourage us to be more assertive about our health care: express our preferences, discuss evidence and say no to treatments. And it's true that most of us need all the encouragement we can get to begin to give voice to our values, concerns and needs.

But words matter. This metaphor of the patient as the captain of the health care team is misleading. It sets expectations for all parties that are neither feasible nor welcome and that add confusion to fledgling efforts at clear communication among clinicians and patient.

Please block this metaphor.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Patient Engagement   Jessie Gruman   Communicate with your Doctors   Organize your Health Care   Make Good Treatment Decisions   Participate in your Treatment   Health Care Quality   Inside Healthcare   Medical/Hospital Practice  


Comments on this post
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eileen beal says
December 11, 2013 at 8:39 PM

Finally, someone is talking about the absurdity of making the patient -- the person with the least amount of insight and education about the problem and the most to lose -- the team leader.

Part of (and reason for) the team, yes.

The center (lynchpin) of the team's efforts, yes.

But leader of the team, no.

EB, Cle, OH



Randy B says
December 11, 2013 at 9:18 PM

Actually there are some of us so educated that we can perform that. Patients are individuals, some can handle it, some can't. Even in my own family, no one else would be chosen to take on the role.

I've heard docs complain they don't have the time to do a number of things. So I help out. That's because I appreciate the great docs I have. Is it so wrong to give my medical team a hand up?

Even worse is having wasted time on some docs that couldn't interpret simple bloodwork. Or even know what things meant. With docs like that, would you allow them to take charge? We just had an expose about radiology exam cheating. Do you think that gives us the warm and fuzzies about allowing you to lead?

and if, like me, you've seen and known those hurt by doctors, you'll think a little differently about who you trust.

Randy

Carolyn Thomas says
December 11, 2013 at 11:27 PM

As usual, a thoughtful - and thought-provoking - post, Jessie. Thank you for this!

My friend Karla (diagnosed with congestive heart failure and acute renal failure at the age of 43) uses the word 'quarterback' to describe herself on her own journey of recovery. She once recalled a conversation with her cardiologist while she was still hospitalized:

"My cardiologist taught me one very important lesson. He told me that I was in a new game now. He said that I had a team of medical people on my team, but that I was the 'quarterback'. If I called a serious game, the rest of team would be there for me. But, if I didn’t want to call a serious game, they couldn’t do much to help me."

She took his words very seriously, and started a daily exercise program. She started eating a heart-healthy diet. And she went on to lose over 100 pounds. She has used this term 'quarterback' a number of times since then; I wrote about her story here: http://myheartsisters.org/2010/03/04/quarterback/

Here's how I interpret the cardiologist's words to her. In the wonderful world of heart disease, our doctors continue to treat survivors who (after perhaps a blip of lifestyle improvements immediately after the scary cardiac event happens) tend to slide inexorably back to the behaviours that put them at high risk in the first place: lack of exercise, unhealthy eating choices, smoking, poor stress management. Another small example: when I do my women's heart health presentations, I ask for a show of hands to the question, "How many of you know what your blood pressure numbers are?" It's absolutely routine to have fewer than half the audience raise a hand. Yet these are all grown women - who somehow believe that it's not their responsibility to know even this basic information about their own bodies.

So what words like "captain" or "quarterback" might actually mean is not their literal definitions of leadership or authority, but what my friend Karla intends them to mean: that it's her job - not her doctor's - to let her health care team know that she's seriously in the game, knowing that if she "didn’t want to call a serious game, they couldn’t do much to help."

I believe that's a pretty fair assessment.

DCpatient says
December 12, 2013 at 11:09 PM

Under this sports metaphor I would like to think of myself as the team owner. I select the talent and expertise to achieve our goal, can fire those who don't play well together or get with the program, and pay the ultimate costs or reap the benefits if we win or lose.

Meg G. says
December 18, 2013 at 8:49 PM

Hey Jessie! So, I love the captain metaphor -- but I don't disagree with you that I can't under all circumstances do all those things, or even some of them ever. But that's not how I see captains -- I see them more as folks who decide the destination and make high level decisions along the way when their skilled crew members need guidance or input. But every good captain needs a skilled, experienced navigator, sail master, engine room mechanic, sail maker, chief cook and bottle washer, etc. And every good captain lets those people do their work largely uninterrupted -- once she's satisfied all understand and concur on the destination and the general route.
So, I like the metaphor, but I think it's because I see the captain's role differently, and not because I disagree with your analysis. Thanks for kicking off the discussion!
Meg