Scott Johnson is one of my favorite fellow diabetes bloggers. Always has been. This post will show you why.
A Guest Post by Scott K. Johnson, of Scott’s Diabetes Journal
Amy’s guest post from Dr. Anne Peters last Thursday on “How to be a Good Diabetes Patient” sure ruffled some feathers. I wanted to take a stab at the other side of the story: How to be a good endo, from a patient’s point of view.
Before I dive into my thoughts, I want to introduce the elephant in the room. As a person living with diabetes, I feel very dependent on the endocrinologist I see. Is it because he has the (almost) final say on my prescriptions? Is it because he is the one who interprets the lab results (which I often don’t know how to make any sense of)? What creates this tilted perception of power? Am I the only patient who often feels this way? I know, I know. My endo works for me. Blah, blah, blah. While that is true, it is also bullshit. I need a good endo on my side, and because of that there is an unnatural sway in the balance of power and control.
I think there are a few different things that might help explain this. I turn to him when I need help, when I can’t figure things out on my own, or when I end up in the hospital for whatever reason (diabetes related or not). Naturally, if he’s able to come up with some solution I didn’t, I am apt to look up to him for his knowledge and experience. I also think changing endocrinologists is a LOT of work. Because of all the work involved in finding, and then moving to, a new endo, things have to be going really badly for me to be motivated to make that decision.
Finally, for the record, I am FAR from the role model for pushing my care team to their limits in regards to them providing top-notch care.
Unfortunately, I settle for less way too often. I don’t think I’m alone in this though, which makes me feel better and worse, all at the same time.
Now, what makes a good endo? I bet that each and every one of us would have a different answer to that question. BUT – we would all have a few things in common.
1) Respect – we need to be respected as a person, first and foremost. We are not to be viewed as another insurance claim to help keep the lights on. I could be your brother, son, father, or friend. Treat me with respect.
2) Acknowledgement – diabetes is an all-encompassing condition that eats up every single second of our lives. Do you have to wonder why we are sometimes frazzled when we come into your office? Acknowledge that in addition to the unimaginable task of managing diabetes around the clock, forever, we also live overflowing, and often stressful, lives. Acknowledge the fact that I had to schedule time off work to come to the appointment. Acknowledge the fact that I might be broke as hell, but still have to pay for parking and transit to come see you. Acknowledge the fact that I am trying very hard to get this diabetes thing right, but might need more help. Acknowledge that 20 minutes is not enough time to help. Acknowledge that we might BOTH be frustrated about things out of our control. Acknowledge that I might be completely overwhelmed and am not sure what the hell to do next.
3) Listen to me – I acknowledge (see above?) that you, Endo, have a challenging task here. You have to keep the discussion focused on diabetes. I know that this is not always easy to do, but if my favorite trainer in the world (hi DeeAnn!) can keep a whole group of rowdy folks focused and on task, you can surely keep one patient at a time on track.
4) Cover the basics – check my feet, ask if I’ve had my annual diabetic eye exam, check my blood pressure, etc.
Beyond those points is where different patients might want different things. It is your job, Dr. Endo, to recognize and react to those different needs. Some patients will want you to push them a bit (in a respectful and encouraging way) for that next level of management. Some will want you (or a resource, like a good CDE) to go over detailed records with them.
Some will be in need of some resources for the mental aspects of living with diabetes. Some will need help with their carb counting or dietary questions. We are all different people, and while a few of us might fit into some crazy diabetes recipe box you have constructed in your head, most will not. We all need different things, which is what makes you so valuable.
YOU are the one trained to help us recognize what we need when we can’t see it for ourselves.
We all want to do well. Sometimes we just need a little different help than what you used on your last patient.
You rock, Scott. ‘Nuff said.
Excellent post! Scott, you correctly nailed each item. We are not the same and we each require different care. No two diabetics are alike!
Well…except for our passion for Diet Coke!
Great job, Scott!
As I head to my appointment with my CDE later today, I will keep this post in mind. I have recently mulled over the thought of switching endos based on something I feel is missing from my care. I hope to touch on that during my appt this afternoon so that I don’t have to switch endos … like you said it’s not a fun process. Thanks for this Scott!
Awesome post Scott! I’m so tired of generic advice & I feel my endo. should be someone who digs deeper with my care each time I go for a visit…after so many visits how can it still be just surface & generic chit-chat? it amazes me…I hate cookie cutter mentality…
I wholeheartedly agree. Excellent post!
My endo understands the struggle and in fact stands up for me when I say that I am not taking care of myself. He will say things like, “it’s not easy” and “you never get a break which is tough” so I am thankful for that.
I WISH he would look at my chart and not challenge me when I say I AM at type 1! He lost a lot of points with me on that. So do I stay or go? I am going to stay because like you said, it’s not an easy process AND he has most of the other stuff down.
Great Post dude. Amy’s right, you rock.
Amy, Scott,
Thanks for this – very timely after hearing the endo’s POV. A couple (few?) points.
Under the “LISTEN” heading, I would hope to be asked two related questions. “Since you were last here, what is working well for you? More importantly, what isn’t working well?”
My “ideal” doctor would also be prepared to discuss any new management tools (CGMs?) and techniques (still waiting to hear about standard deviation) that would apply to “my diabetes”.
Under the “ACKNOWLEDGE” heading, I want my endo to celebrate the things I am doing well and to avoid talking down to me with regard to managing the beast better, and for goodness sakes let’s not make the NUMBERS BAD (since it also makes me bad)!
Thanks Again – you have given food for thought (NO BOLUS REQUIRED!)
Fair Winds,
Mike
Hey Scott, thanks for going out on a limb. My perfect endo sees nothing but me when I walk in the door. She remembers a few little things about me that we’ve discussed before which makes me feel like I’m a real person to her not just a bunch of missed target numbers. She spends more time looking at me than her computer screen and I love Mike’s two questions – asks “What’s working?” and “What’s not working?” She acknowledges that living with diabetes is a bear and that it’s natural to have ups and downs and get sad and crazy at times. Then she helps inspire me to continue to do my best through some thoughtful words and medical science. When I leave 30 to 40 minutes later I feel like the visit was one of the best things that happened to me that week: the connection, the “being seen,” and the new information I take away to make me feel recharged. In fact, I like this endo so much I can’t wait till my next appointment. Now all I have to do is find her!
George, if I understand you correctly, your endocrinologist just looked at you without consulting your chart and challenged you about being a type 1 diabetic? He mistook you for a type 2 based on sight alone??? If that’s actually what happened, you should you go, and you should be furious. If my doctor did that to me, not only would it be the last time I’d see him/her, but the medical board would hear about it. Patients are already cowed because doctors have the education and the “power” in the relationship — but in reality, the patient is the one who is in charge when it comes to their own health.
I document everything my physician says, and if he says something even mildly inaccurate, or something with which I disagree, I call him on it. I ask him to give me references if he talks about new research, so I can look up the articles myself. My doctor is not my “friend.” I go there for expertise, not for a buddy.
Brillian post Scott! Thank you so very much. Great to hear others talk about difficulties with the endos of the world. Makes me feel more comfortable in expecting more, encouraging me to demand more and to back off from thinking I’m the one who is wrong, too demanding and screwed up when I don’t get the help I really need and want. Thank you!
awesome post, Scott. as always
thank you, Amy, for choosing his voice for this one…
Nice counterpoint, Scott.
I wish the American Diabetes Association and the American Association for Diabetes Educators would use your post and that of Dr. Anne Peters as the basis for, at their respective conventions, a presention/dialogue on how to make diabetes health care visits work better for both the patients and the providers. The ADA accredits diabetes education programs. What about accrediting office visits or a system for sharing meaningful blood glucose records or an effective Q&A list to quickly get to the presenting problem and establish priorities for the visit?!
Every time I visit my endo and hand over my obligatory blood glucose records, whichever nurse–and it’s usually a different one each time– says something like, “You get a gold star! Most people don’t bring their records.” That is sad. But what’s even sadder is that we don’t know why, exactly.
Could it be, in part, the ongoing frustration providers and patients have with their difficult, complex, and too-often unbalanced relationship?
I know there are many needs when it comes to diabetes awareness. Too many people don’t have access to health care. Too many don’t even know they have diabetes. But let’s not forget the small space represented by the yearly visit to a GP or the quarterly visit to an endo. There’s room for improvement there. Perhaps patients and providers can figure out how to best help each other.
EXCELLENT POST!!!!!
That was awesome Scott. Having a good endo not talked about enough and when your the parent of a child with D, it’s critical. My son was dx’d at the age of 2…. 16 years ago!!! We’ve been at it a long time. Last year, I was threatened with DSS (Department of Social Services) by a young, ignorant endo at Boston Children’s Hospital because my 17 yr old was non-compliant and he didn’t like his numbers (or attitude lol). Needless to say, we RAN back to Joslin….
Well-said, brother, well-said.
I love my endo. This just made me want to go hug her. She recently went through a serious diagnosis and had a doctor with a rough bedside manner – she said it made her realize what it’s like to be on the other side of the stethoscope. Maybe more of our endos need to know what it’s like to be a patient.
Amy & Scott ~
Thank you for giving a voice to many of my concerns and those of many other people with diabetes. I would like to find a doctor and he/she doesn’t even have to be an Endo, that would treat me as a human being and not someone who is going to help him/her keep the lights on in their office.
I am so tired of the doctor looking at me and pronouncing me as ‘non compliant’ or ‘challenging’ just because I have multiple medical problems. Scott, you have a gift of being able to express yourself very well. Thank you for sharing your thoughts.