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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  • André Thénot

    The ideal captain would combine knowledge in 3 very different areas: clinical, administrative and personal. It’s a Frankenstein-like job description.

    Could relatives (or trusted friends) have a role to play in this? I am wondering how a team could be structured and facilitated, to accomplish what we expect of this “captain”.

  • BudgetDoc.com

    I think a core distinction that it is important to make here is the difference between knowledge and comprehension.

    A patient and a doctor can both have access to the same numbers on a patient’s chart, but the doctor will understand what they mean in a different way than the patient is able to.

    While the doctor can explain what they understand to the patient, the patient will still only know it, and that difference has to count for something.

    • rbthe4th2

      Hmmmm what about patients reviewing info on medical resources? I’ve heard the ‘you can’t see the big picture’ but can’t get an explanation of ‘how the big picture’ differs from the theory I bring up or what is incorrect about it. Nor can I get differential dx’es.
      With all due respect, especially with the younger generation, I’m not so sure that knowing and understanding is not just the problem of the patient.

      The internet and access to medical material has the potential to really help docs do the job they trained to do and patients to be able to get better quicker. A faster resolution.
      Randy

  • Steven Reznick

    I am very old school but believe the physician has a responsibility to educate the patient about their problem and the various diagnostic and therapeutic options. The physician can recommend expert second opinions from clinicians the physician would use for himself or his loved ones. I think it is fair to tell the patient what you would do with the choices if you were in their shoes or if this was your family member. Ultimately though the health care provider is an educator and adviser and the patient must make an informed decision. In non critical life threatening situations we usually ask the patient to make their own appointment but we communicate all the data to the office we are referring to. We do this because too often we stepped in and obtained an appointment for a patient only to be told their schedule would not permit them to keep this appointment. If they have trouble reaching the other physician or imaging center we do step in and assist. I am not sure who is ” the captain of the ship’in this instance but believe it is more of a mutually cooperative effort. Coordinating care is only possible if the patient keeps you in the loop as to where and when they are going and then informs that office that they should send you a consult report with their findings and suggestions. If that doesnt occur it is exceedingly difficult to coordinate care you are unaware of.

    • SarahJ89

      Thank you.

      As for appointment setting, I always find it completely bizarre and wasteful when a medical office announces *they* are going to make an appointment for me. What? They have no idea what my schedule or transportation resources are. How ridiculous. It’s never been necessary for them to waste their time doing that once I explain my preference. It seems to be one of those knee-jerk “But we’ve always done it this way” things to which bureaucracies are prone.

  • SarahJ89

    I couldn’t disagree more. There’s no way my doctors can know or have time to learn my values, family and work demands, financial picture, resources, etc. They only see one piece of my life. It’s up to me to gather *all* the information I need to make my decisions, then weigh them in relation to what’s going on in my life and come up with an answer.

    Medical issues are only part of the whole picture of my life. I am the person who has to live with the results of my decisions, not the medical staff. As long as I am conscious I am the person who is responsible, not the medical staff. Actually, I’m responsible even if I’m unconscious because it’s up to me to ensure I have a signed medical power of attorney in place with someone I trust who is intelligent and capable enough to interact with medical staff. I’m lucky enough to have found that person.

    This doesn’t even begin to address the fact that I’ve been assigned a health care “team” without my knowledge or consent. I have no desire for a “team” approach, much prefer having ONE doctor who has the ability to act as a consultant in my decision making. But those days are gone so I’m stuck with talking to strangers and looking at the top of my doctor’s head as he taps on his EMR laptop. Too bad.

    • rbthe4th2

      That’s been said to some of my doctors – because they decided to be the captains without my consent. That has cost me money, time, etc. that has made an impact on my families’ life. No apologies that those choices may or may not have been the best for me. Would people be willing to trust “captains” again?

  • Halona Black

    While the patient may not have the same level of knowledge a doctor has, she is an expert in her own experience. And since she is the one receiving the care, she is, in a sense, the captain of her care. She has a right to advocate for herself, to accept or refuse treatment as she sees fit. In that sense, she is the captain. Patients are so often looked at as “things” to be treated without any concern for how she even became ill in the first place. I love the metaphor of making the patient the captain of her care because it forces her to take responsibility for her own health and being an active participant in it as opposed to just sitting back and accepting what doctors say as the law.

  • T H

    Since this seems to be a discussion/argument about semantics, how about this one:

    I am the master of my fate: I am the captain of my soul.

    …. but every ship needs a pilot (physician) who knows the local waters and how to navigate the local geography.

    • rbthe4th2

      What if the pilot is incorrect?

      • FLMD

        You are always welcome to find a different ship.

        • southerndoc1

          How about we just drop all the whole stupid captain and team analogies?

          • FLMD

            Works for me.