A recent blog post by Riva Greenberg made its way through the DOC (diabetes online community) last week, creating a vibrant conversation between people with type 1 diabetes and patient advocates. The post was in response to a quote by Victor Montori, M.D., who made claims about health care providers ignoring the “work of being a patient.”
Greenberg quoted him in her post, as saying “We don’t measure the work of being a patient. There is not a single textbook that describes the work of being a patient. We just assume it’s not a big deal.”
“The lived experience of being a patient speaks volumes. But no one is asking,” she wrote. “In all of medicine, healthcare, the constant sturm and drang of how do we help people self-manage, get access to care, no one is really looking at us and what we do every day.”
But one of those people, our friend and supporter Dr. Nick, reacted to this article in a different way. Here at T1D Exchange, where our work is deeply affected and driven by the patient’s experience, we appreciate his perspective:
I have a different take on this. Let me restrict my comments to issues with regards to T1D, (though I am sure Dr. Montori was making the comment more generally about patients of all sorts) and sentiments expressed at times on Glu as well, not just in Riva Greenberg’s piece.
When Dr Montori states “There is not a single textbook that describes the work of being a patient. We just assume it is not a big deal,” I would say that perhaps he is looking in the wrong places, at least in regard to T1D. If one goes to the medical literature pertinent to T1D, like the need for CGM and closed loop systems, or newer faster insulins, there are regular discussions and acknowledgements of the challenges and shortcomings of current T1D therapy. The same goes for medical meetings and update programs attended by HCPs who care for people with T1D.
Frankly, I find it insulting to assume that those who have dedicated their professional lives to caring for those with T1D could be characterized by “we just assume it is not a big deal.” In my experience in working closely with 8-9 other endocrinologists, none of whom have T1D, nothing could be further from the truth. Trying to get someone to do something difficult on a daily basis, like count carbs, measure blood sugars, figure out an insulin dose, keep records, wear devices, risk hypoglycemia, feel like crap after having your sleep interrupted multiple times by blood sugar issues, and constantly juggle multiple factors, does not mean you don’t appreciate that it is challenging. It means you think that it is IMPORTANT, despite the fact it is challenging, in order to maintain a chance of living a healthy life. NO ONE who has any experience in caring for people with T1D and who actually listens to what T1D’s say, thinks it is easy to do these things, to live this life. The same goes for most of the endocrinologists I meet and work with at medical meetings. Just because it is not in a text book does not mean it is not important, and not appreciated by those who are trying to provide good patient centered care. And just because it is not openly stated does not mean the HCP does not ‘get it’ — or hasn’t at least tried.
Of course someone with T1D, or someone who lives with it as a support person, understands better than anyone else the day-to-day challenges we or our loved ones all live with. I have lived this T1D life since 8-29-1968. But I don’t think we, in the T1D community, should conclude that if you don’t, you can’t, or don’t care to. And by extension, can’t offer meaningful input into navigating the difficult life of T1D. I think that sells a lot of HCP’s short, not just doctors but CDE’s, nurses, nutritionists, obstetricians, pump clinical specialists, etc. To say that “no one is really looking at us and what we do every day” is just not true. The people developing advanced diabetes technology and trying to improve current treatments are doing exactly that. I know. I meet with them frequently.
If someone says to me “you just don’t understand!” (which is rare), it makes me wonder, what is the point of that sentiment? Does it help us to come up with useful strategies to cope? To improve? To feel better? To try to successfully meet the real challenges you face every day? To successfully outlast this disease? Ultimately, in T1D you have to be your own doctor in many ways. Think of it- in a hospital, two trained nurses need to sign off on a dose of insulin before it is given to a patient. Yet those with T1D, or their support people, make those same determinations multiple times every day. Only those who take ownership and have access to good care can succeed. But most people need help to really succeed, including but not limited to a good doc.
I think we as patients need to have realistic expectations of what an HCP can offer. Hopefully, they provide good coaching, information, suggestions, feedback, encouragement, and reality orientation. And hopefully they TRY to understand, which starts with listening. Hopefully, you can work together to beat this freaking beast of a disease, at least for one more day. Like every profession, there are good ones and bad ones, and most people are somewhere in between. Different doctors and other HCP’s have different personalities, as do patients, and sometimes it is a bad fit. But in my opinion and experience, most people who go in to endocrinology or train as CDE’s, or are otherwise involved in providing care to people with T1D , are dedicated to trying to take as good care of people as they can, despite all the outside problems, restrictions, time pressures, insurance nonsense, paperwork, etc. They really do care.
-Nicholas Argento MD/Dr Nick, with introduction by Amy Bevan/GluMom
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