How to be the “Captain” of your own Health Care “Team”

15 Jun How to be the “Captain” of your own Health Care “Team”

Posted at 08:00h in Advocacy, Practical Tips by Triage Cancer

If you ever find yourself reading advice online about how to cope with the practical side of a serious diagnosis, you have probably come across language about “teams:” “your health care team,” “your medical team,” “your doctor and his or her team,” etc. The “team” terminology is used so often that it has merged into how we think about health care. Consequently, over the past few years, most professional advocates and advocacy organizations have begun to refer to patients and caregivers as crucial members of the “same team.”

Given my experience as a caregiver and advocate, I appreciate this sentiment, because I agree we should all be considered as a team in the sense that we are cooperators working toward a common goal. However, when reading about how to approach health care providers, I have always felt like a few steps are missing from the instructions (like ingredients missing from a recipe). How do we go from “I just met you” (or “I just asked you the most serious question I have ever asked anyone”) to “we are now members of the same team?” What if we, as patients and caregivers, would like to be considered part of the “team,” but we do not know how to join? Surely it should not feel as exclusive as tryouts for “teams” felt when we were kids, right?

Unfortunately, it does sometimes feel this exclusive. We also need to consider: what if we, as patients and/or caregivers, do not feel like we are a part of the “team” even after interacting with a particular provider? And: if there are “teams,” does that mean that there is an opposing team? Ideally that opposing team would be the diagnosis itself, and it theoretically is, but unfortunately, that is not always how it feels when dealing with health care providers.

This is a lot to unpack. The most important thing to keep in mind is that this team is working to serve your purposes. You are the person the team is meant to support. Your life is the life the team is meant to improve. However, it is common to feel intimidated, rushed, frustrated, hurt, or confused when interacting with health care providers, and that is not how a teammate should make another teammate feel. Let’s discuss some strategies about what to do to “join” the team, and how to respond when it still does not feel as though the chemistry among the teammates is working. In my experience, how you conduct yourself with your providers at the beginning of the relationship is one of the most important factors in avoiding dysfunctional interactions later on.

Before meeting with a provider for the first time (or addressing a new diagnosis with a provider you know), you may want to spend some time thinking about how you would like to be treated in order to feel like a member of the team. It may also be useful to plan ahead about what actions would make you feel devalued, as if you were not a member of the team, and how you would like those negative feelings to be addressed by each party.

First and foremost: try not to stress or overthink your approach. You have plenty on your mind already if you or a loved one is dealing with a cancer diagnosis. Believe in yourself: you already have the skills it takes to be a member of your medical team. Everyone has been on some kind of a team before – at school, at work, among friends, or even in your family – so you already have tools you can use to be seen and considered as a member of the team. Breathe. Be confident. Go into each appointment with the mindset that the folks there are there to help YOU. This means that you have an inherent right to explain how you would like to be helped. If something is done or said to you that does not feel helpful, say so. If you approach a health care situation with a genuine assumption that everyone you meet is there to help you, that will inspire a sense of goodwill that should help you to feel heard and valued. Optimistically expect that the appointment (and any follow-up communication) will go well, and you will be in a better frame of mind to handle any challenges that arise, just as you might when preparing for an important event with a team.

In my experience, the primary reason that people feel unheard and unvalued by their health care providers is from a sense of being condescended to; they may feel they are being treated as though the provider’s opinions are more worthy than the opinions of the patient. This can manifest in a number of ways: an unpleasant dialogue in an appointment, or a misunderstanding in follow-up communications. One way to reframe the way we think about these frustrating interactions is to remember another aspect of the “team” analogy: a provider and a patient are not each other’s employers, nor are they each other’s employees. A patient may, of course, “hire” or “fire” a provider. However, this does not mean the relationship is a hierarchy. The treatment of the patient is a joint effort. If a patient does not want to follow a treatment plan the provider suggests, the patient has that right. If the provider is uncomfortable about this refusal, it is incumbent on the provider to explain the medical reasoning behind the treatment decision. Teammates should respectfully hear each other out as they share their plans and concerns and strive toward a common purpose.

So: how do we “join” the team in the first place? After all, this is not a game, and you should not have to feel like you have to “play.” Do not worry: since you have probably been on a team at some point, you can use similar methods to relate with your providers and their coworkers. Give yourself that permission. You have the right to do so. You are equals. Treat your providers and their coworkers like your friends. Enter with the mindset that they will become your friends, at least in a professional sense, just as you would when being introduced to teammates in any other setting. Maybe you have hobbies or interests in common with the provider. Maybe you can chat about your kids or grandkids and their kids or grandkids. Make deliberate human connections, just as you would when you know you need to cooperate with someone long-term in any other part of your life. If you have questions, ask until you feel answered, no matter how many conversations or how much time that takes, just as you would when working with partners on a project. Over time, as your relationship progresses and as you set this standard for how you will conduct yourself, it almost always becomes contagious, and you will most likely be treated with the same camaraderie and decorum in return. It will hopefully feel like more than mere polite civility, and you will be moving toward what I call a “purposeful friendship.”

If you take nothing else away from the “team” language, take this: teammates have the right to address concerns with other teammates. Teammates should be working toward a common goal, and YOU are the one who sets that goal in your own health care. Teammates each have different tasks to perform, so your tasks and your providers’ tasks will obviously not be the same, but these roles should all be workin towards the same objective.

I know – in a very personal way – that this amount of effort seems unfair when you have so much to think about and so much to deal with. Frankly, I agree: it is often unfair that maintaining pleasant repartee with a health care provider should fall so heavily on the shoulders of the patient and/or the caregiver. But, here is how I justify taking the time and making the effort: by setting the “team” tone early, you will be the one to set the policies and procedures on how you expect to be treated by the providers in return. This will help establish that your care will be on your terms, and it will also substantially decrease the likelihood that you will ever be made to feel as if you are not a member of the team. In other words: this is the most failsafe way to be elected as “team captain.”

Danielle Pardue is the Legal Fellow for Triage Cancer and a patient advocate. She is the primary caregiver for her mom, who has Stage IV lung cancer, and her dad, who has several chronic illnesses.