cystic fibrosis, healthcare, Medical Education

MedEd Storytime: On Coproduction

It’s July, which means lots of doctors are getting promoted to new positions. It’s an exciting and scary time – for you and for us as patients! I’m starting a series on experiences I’ve had as a lifelong chronic illness (cystic fibrosis) patient and hoping to give physicians lessons to take with you as you’re learning. I figured I would start with some success stories because I have plenty of horror stories in the vault for later!

Let’s talk about coproduction! For the uninitiated, this is the concept that doctors and patients should be working together, ideally in an equal partnership. The medical community often has a pretty paternalistic view of medicine – doctor sees patient, gets history, identifies problem, prescribes treatment – but we want to move towards the partnership model, especially in the chronic illness community. What does that look like?

A few disclaimers before I share some examples: I’m a white, highly educated, young woman. So I have some major privileges and also some not privileges and in different medical settings, these play out differently. When I was 18, the young and woman thing tended to dominate; now, the white and Ph.D. thing tends to win out. I also have learned how to use my Ph.D. as a shield, and it’s really important to note because doctors treat me as a colleague very willingly – I speak their language! They hardly have to translate for me. Ok, end of disclaimer.

When I started college, I was moving away from home and had never been alone in a doctor’s office or outside of peds. It was rocky, to say the least – this is a story for another day. I eventually landed with a doctor who taught me how to participate actively in my care – not that I wasn’t trying before, but I didn’t really have the tools. What did that look like? I was having a lot of health issues at the time. Every visit where I came in and something was wrong, she would say, “What do you think is going on here?” If I said “Look, I really don’t know,” she would say, “No, you have to think about what it could be – what’s changed in your routine? When did you start feeling worse? What exactly are your symptoms?” until I came up with an answer. She got me in the habit of keeping track of my symptoms so that I would notice the subtle changes that could be leading to changes in my health status. Once we had agreed on some potential causes, she would say, “Ok, what would your treatment plan be?” Doesn’t matter if it was different from hers or wrong – she wanted to know what I wanted to do. And remember – this is a chronic illness I’ve been living with for 20 years. I know what the treatment options are, this wasn’t an unfair test. Of course she would throw in her ideas, too – I don’t know everything. If there were multiple acceptable treatment options, she gave me the choice – I was in the driver’s seat. I found her methods frustrating sometimes, but I am eternally grateful for her approach. Before she was my doctor, I was trying to speak up but was constantly ignored. She taught me how to articulate my thoughts in a way that the medical community could understand. She also showed me what it was like to be listened to and partnered with, so now when I am ignored – of course it still happens – I know to find a different physician.

That brings me to my current doctor (I moved, otherwise I’d still be with my college doctor. She was great.). I came to him ready to be a full partner in care, and he was built to be the same – it’s a slightly different relationship because he didn’t have to teach me how to do this, but feels very similar. So what does this look like? Let’s go through, for example, planning my IV antibiotic treatment last fall for a cystic fibrosis exacerbation. I’ve been so healthy the last few years that he had never planned IV treatment with me. I first expressed my wish to stay the heck out of the hospital. He trusted me enough and believed that I had the experience of at-home administration and approved a full at-home course. Drug selection is where things got interesting. My bacteria have been multi-drug resistant for over a decade and until recently I only had one antibiotic I was sensitive and not allergic to (colistin) so basically we used colistin plus whatever my favorite drug was. The second drug didn’t really matter since I was resistant to it, but the standard of care is to pick two drugs and we do think there’s benefit to having multiple drugs on board. However, for this most recent course of IVs I had regained some antibiotic sensitivities, which we were very excited about. I hate colistin; it renders me pretty un-functional, with hours of dizziness each day and pretty severe numbness of the mouth that together necessitate that we back the dose off over time, which of course isn’t great if you’re trying to stay at a therapeutic dose level. It makes it difficult for me to work at all, I feel unsafe driving for much of the day, and while the point of IV antibiotics is to rest and recover, I still like to keep up with some daily life. So, I requested we use the drugs I got re-sensitive to (aztreonam and cefipime), a combo I used to use all the time. You may notice those are both beta-lactams. Not a normal combo, and yet, it used to work well for me. We went back and forth about what to do; I read some literature; he thought about it. We considered just trying one antibiotic, as it turns out that there is no research supporting the concept of using two drugs. He decided to take a chance and try my combo and guess what! It worked. I got to spend my two weeks feeling better on IV antibiotics than I have in years, with no side effects to speak of – and of course, if I hadn’t been seeing symptom improvement, I would have gladly conceded and switched drugs. That’s the partnership part. Here are some things that he did not do while we were planning: he did not try to talk me into taking an antibiotic that I am sensitive, but allergic to that gives me seizures (yes, that’s happened. Frequently.). He did not dismiss the idea of trying my old drug combo out of hand just because it’s non-traditional. He did not insist that I stay in the hospital under his supervision just because he had not personally observed me taking these drugs, or any IV drugs, before. Of course, you see in this example that my Ph.D. knowledge busts through clearly – but if your patient said “I’ve taken these drugs before and it worked well for me,” what would you say?

In brief hospital visits, I recognize that coproduction is much more challenging, but I do not think it’s impossible. You can still get patients’ input about why they’re there, what they think is going on, how things are progressing. You can still offer choices as much as possible – we all know that medicine is not black and white, and when there are grey areas, patients, not doctors, can make calls. (For example: we have two medications we can try; we don’t know which one could work or which one is better. One will have side effect X; one will have side effect Y. Or, one is a pill, one is an injection. You pick.) Of course most of your patients don’t have a “street medical degree” which is what I call my knowledge, but I think that involving patients in care as much as possible gets us on board with the plan and gets us on your side. It really is more fun for everyone.

One final tip, because I run across it so often: I told you at the beginning that I am a scientist. While I never took anatomy, I’ve spent enough time in the medical world that I get by, plus I’m comfortable saying when I don’t understand something. I cannot tell you how often doctors steamroll me with medical terminology. When I broke my hand, the doctor started naming bone names. I’ve been expected to read CTs before. In the best of times, I don’t know this stuff and can ask you to back up. In the worst of times, when I’m panicked, I might not be able to ask you and also won’t remember what to ask you about later, so please try to remember to back down your language and constantly check for understanding! A critical part of having a partnership is having a shared language.

I would love to write more of these kinds of stories, so let me know if you want to hear them!

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