This blog post originally appeared on The Chronic Disease Coalition’s News on November 12th, 2019.
I want to help people, but I only recently realized how. For 20 years, I specifically steered my life away from any and all activities related to healthcare beyond what was necessary to be healthy. Recently I’ve rethought that. I would really like to improve communications between patients and their providers. Because honestly, even if our current circumstances somehow evolve into a utopian healthcare system, if we can’t tell our providers what we want and don’t want, it won’t work. Universal access does not guarantee effectiveness. It’s a giant leap, but it won’t get us there by itself.
Turns out medical communication is not a revolutionary idea. People have made entire careers out of it. But most of what I have found related to medical communications is discussed in academic arenas. Which is a great place for it – the only way see radical change is to add it to medical school curricula – just not the place for me. I am not an academic, and going that route isn’t a path I want to take. I would like to bring it from academic circles into the practical.
Why is medical communication that important?
I grew up surrounded by people like us, people living with chronic and/or autoimmune conditions. From the good: sympathetic providers who worked with them to find solutions, sometimes experimental, because it was the right thing for that patient. To the bad: the hospital staff that took it upon themselves to give a patient an experimental treatment and ended up inserting in into the vein backward; the physician who wouldn’t order a lab test for a diabetic because in he thought (and told her) that she would probably die soon; and the provider who sent his teenage patient out of the room to discuss treatment with her parents.
It was experiences and stories like those that helped me understand what I wanted from a provider. Well, more like what I didn’t want. I couldn’t deal with adversarial providers and succeed. It took a while to learn that. I had to get past the self-destructive rebellion of my teenage years (six years non-compliant diabetic) and learn to pay attention to who I was working with, to ask questions, assess their treatment style, and to walk away when I felt it wouldn’t work.
It’s easier said than done, I know. Being assertive with people you depend on for your life is intimidating. And there is an immediate intimacy to relationships with providers, created when you share things you may not even tell loved ones, but that you need a provider to know in order to help you avoid whatever it is you fear most for your physical self. But if you can date to find a romantic partner, or interview contractors for that bathroom remodel, it won’t be a stretch to do the same for your providers.
Here are some suggestions to build a better a patient-provider relationship:
Decide what you think is important. Their education? The years of experience with your particular condition? Their research background? (which implies familiarity with latest treatments)? – and see who ticks the most boxes. Most of the information can be found online. The rest have to be addressed in person.
Ask what their treatment style is. Share your wish-list of things you want to accomplish or goals you want to achieve even if they feel out of reach. Bring ideas for how you like to handle your condition instead of waiting for them to tell you.
Watch how they react to you. Are your ideas well received or does the physician dismiss them? If the physician disagrees, how do they express that? Is it a discussion or a lecture?
Pay attention to their non-verbal cues. I once knew a provider was going to be a good fit because of how she sat in her chair. She was slouching, which meant she was comfortable enough with herself to not stand on ceremony, even with a new patient. (I am a pretty informal person.)
This approach might not be for everyone, but your physical and psychological reactions to a visit will tell you whether you are comfortable with a provider. Intuition is there for a reason. We should all listen to it more.
That’s not to say it’s all on us. Communication is a two-way street. Even with all that experience growing up, it still took a good provider to make me a good patient. I responded to one particular provider’s demonstrated lack of judginess* by pushing boundaries to see if it would still hold if “misbehaved.” It did, and I got comfortable asking questions and saying no.
Based on that patient-provider relationship, I have built a network of a dozen or so providers, ones I trust to be honest even with bad news and allow me to push back when I disagree with a method of treatment; to share the information I need to understand my conditions; and to catch me when I fall.
Why can’t we all have that? As I said, it’s not easy. It takes work from both sides, as does every relationship. But we could have that if we start taking steps toward each other. And finding the right people with whom to entrust your life? It changes things. Definitely for the better.
*Yes, I made up this word, but you all know what I am talking about. And ‘judgment’ makes it sound more reasonable than it is.