Why patients should not be captains of their health care teams

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.

Jessie Gruman is the founder and president, 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 blog.

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