Patient lives are hard. For many of us living with one or more chronic or autoimmune condition, it’s like having an additional full-time job. It’s similar to all those home DIY shows where you start a project but sink half your budget into fixing the foundation or re-wiring your house. No one can see all the work that goes into it, but without that work, the house is going to fall down around you.
So you do the work, hopefully with help from clinicians you trust. I confess, am very picky about my clinicians. Some would say unreasonably picky. For example, when looking for possible replacements for a retiring clinician, I wondered whether 15 years of experience practicing was enough to handle my weirdo body, many parts of which seem to have minds of their own separate from my actual brain.
And, when I finally do settle on a new clinician, I have high expectations. So far, I have been lucky that I have been able to find so many clinicians that meet those high expectations, especially as healthcare staffing issues grow.
I rely on them for a lot of things: their knowledge of how the condition can work in a body (it’s my job to figure out how a condition works in my body); the latest developments in treatment approaches; their input on whether a symptom is becoming worrisome; and, of course, sanity checks.
But there are some things my clinicians can’t provide, both concrete and abstract, and I shouldn’t expect those things of them.
One example of the concrete that no patient can expect of their clinicians is for them to know what medications cost. I have heard from a lot of patients that they would like their clinicians to be mindful of the financial impacts of recommended courses of treatment, and high drug prices have dominated headlines on and off for decades.
That is impossible. Perhaps if it were purely a matter of prices the drug companies set, they could do it. But insurance companies and pharmacy benefit managers throw some pretty big wrenches into the mix. A clinician could have 100 patients, and each one could pay a different price for the same medication. And that’s even if they have access to each patient’s insurance coverage information. Put all of those elements in a bag and shake it up, and under no circumstance will a clinician be able to meet that particular expectation.
On the more abstract side, I, and many patients, have high expectations for how clinicians treat us. As in, how we work together, not how to manage symptoms. I require that my clinicians treat me like a peer, who brings as much knowledge to the table as they do. They bring their knowledge and experience of the condition and I bring my knowledge of my body and life circumstances. Unlimited questions, refusals of types of treatment I don’t want, negotiations, and mutually respectful interactions are par for the course, not a special circumstance.
What I do not expect is for a clinician to step in as emotional support. Careful and compassionate language, yes. Space to deal with our emotions as necessary, and consideration of how those emotions can impact our conditions, yes. But it is not fair to expect clinicians who have no training in mental health treatment to hold our hands and attempt to treat the emotional burdens that come with the trauma often associated with chronic conditions, especially at diagnosis. Other than my psychologist, none of my clinicians has had training in how to help me with my mental health, and even if one was to attempt to do so, without proper training, it could be a disaster.
I heard someone in a meeting sharing their story about this once, about how there had been a fertility issue and a clinician’s callous language had exacerbated the pain of the medical situation. She said she wanted a clinician who would sit on her couch with her holding her hand as they delivered difficult news.
I get it. It’s hard to deal with trauma when the person delivering news you don’t want to hear doesn’t seem to get the turmoil that is suddenly your life. But expecting them to be your friend, and assume the role of emotional support isn’t fair. That’s not their job.
These are just two examples of how we patients wish patient-clinician interactions would change. These two are not realistic, but there are many more that are. We should be asking for those.