Today our correspondent Dan Fleshler in New York helps us examine the results of a new survey of healthcare providers about their insights on doing their jobs helping people with diabetes... and our own informal survey of the experiences we patients have with HCPs making good, bad and sometimes ridiculous comments about our illness.
Advice for Physicians from People with Diabetes
According to a new survey by insulin maker and diabetes drug company Novo Nordisk, 56% of healthcare providers who treat people with diabetes (PWDs) say they “need more training and support” to help patients manage the emotional and psychological burdens of the disease.
It’s good news that more than half of them realize they need help, and it says a lot that many recognize the importance of the psychosocial side of diabetes care and that the words they use really matter.
Yet, too many healthcare providers still completely ignore the emotional needs of PWDs. And some add to the burdens of the disease because of insensitivity and what appears to be sheer ignorance. That is evident from the anecdotes shared with DiabetesMine after we canvassed PWDs on Twitter for examples of their “best” and “worst” encounters with doctors. We were told some real horror stories, as well as heartwarming tales of caring, wise physicians.
Taken together, these tales convey advice from PWDs that doctors need to hear:
1) Show Compassion and Empathy
Let’s start with examples of medical heroes. There are wonderful, empathetic doctors out there who understand the psychological toll of diabetes, according to some respondents:
- “I was under a lot of stress and feeling burned out. I was meeting my new endo for the first time. I told her I wanted a break from my pump and I just burst into tears. We talked and she asked me if I wanted to see a therapist. She understood what I was feeling and wanted me to know there was no shame in talking to someone and that diabetes is a lot to deal with!”
- “My BGs were going up and down like a yo-yo and I didn’t know why. It was really frustrating because I’d been doing so well… My doc was really sweet. She told me, `This happens all the time’ to her most conscientious, careful patients and that I shouldn’t beat myself up. Best advice I’ve ever gotten.”
2) Empower Patients by Inspiring Confidence
The best doctors give anxious patients the confidence they need to take control of their own health.
For example, one Joslin Medalist (who’s had diabetes for 50+ years) told us:
- “I was 12 at diagnosis, a skinny, scared preteen. The family physician who had diagnosed me told my mother and me that one day I would know more about my condition than even my doctors… He was correct!”
And some more recent examples:
- "The best, most empowering statement from our little guy’s endo just after diagnosis: `I guarantee you that within six months, in a room full of medical professionals, including me, you will be the most knowledgeable person about your child’s type 1.’”
- One mother described how her 10-year-old son was asked by his pediatrician to explain how his new insulin pump worked. The doctor “listened intently and asked smart questions as it was explained to him by his young patient. It was so empowering for my kid to be positioned as the expert, and to have this very smart man demonstrate a willingness to listen and learn from him.”
3) Don’t Be a Jerk
On the other hand, some accounts convey the kind of dehumanization that treats the patient as an object, and a callous, rude disregard for PWDs’ feelings:
- “The endocrinologist told me to lose weight, without even looking at me during the office visit. I am 5'3" and was 126 pounds then. He sat at his desk the entire time without looking up.”
- “[One endo] used to have the secretary call me with my A1c results and say, `It’s not good enough.’ It was so awful!”
- “I went to see my general practitioner because of classic symptoms. He called others from the practice in to wager on my blood sugar."
- Another PWD was “frustrated by rising blood sugars after working out” and the lack of good answers from her clinician. She asked her doctor, "Can you give me any articles to read or tell me about other patients' experiences, or suggest where I can find out about this?" To which the doctor replied, "Do you always ask so many questions?”
4) Don’t Be an Ignoramus
Too many doctors know shockingly little about diabetes. Some of these stories are downright scary:
- “An anesthesiologist said to me that there was some correlation between me having diabetes and small nostrils. I swear.”
- “My PCP called me to tell me that I need to see my endo more because my blood glucose was "very elevated." It was 178, and I was rebounding from a low and dealing with the stress of sitting in her waiting room for much longer than necessary -- also, my A1c from that same blood draw was 6.1, so I think I was doing okay!”
- Another respondent came to a hospital with a BG in the 500s, feeling very sick. She was told by the doctor on call that there was "no evidence of ketoacidosis." Uh, that doctor needs to go to a camp for kids with diabetes, who know more than he does.
5) Give Your Patients Credit
One respondent noted that it’s important not to diminish the contributions of the patient-partner:
- “My endo once told me, 'We’ve done a good job keeping you alive all these years.' I corrected him and said, 'No, I’VE done a good job keeping myself alive all these years!!’”
She's right. It's been estimated that PWDs spend less than 1% of our time with healthcare professionals each year. The rest of the time it's all on all us to manage on our own, doing our best to use whatever guidance they may have offered.
Smart Doctors Can Help
Even though PWDs spend most of our time on self-care outside the clinical setting, we still need physicians (and/or diabetes educators and nurses) who are compassionate and smart -- not just number-crunchers who only help us figure out insulin-to-carb ratios. Just look at the Novo survey, showing that 32% of the 1,200 PWDs said they “feel overwhelmed” by their diabetes.
Sad to say, it’s not easy to find health professionals who make it a priority to deal with common emotional and psychological consequences of diabetes.
Less than half (45%) of the 500+ healthcare providers in the Novo survey (including more than 300 physicians) said their success in caring for PWDs depended largely on their ability to understand and manage the “emotional issues” confronting their patients. It’s heartening that so many clinicians understand that, but it’s discouraging that the rest of them don’t.
Clearly, there's quite a bit of work needed to help some of these HCPs see the light -- even as many are doing a better job listening to and taking an empathetic approach to diabetes care. As the patient empowerment movement is growing and more of us insist on taking an active, engaged role in our healthcare, with luck we'll be hearing more encouraging comments and fewer head-shaking flubs along the way.