I have a confession to make. Sometimes I am not completely honest with my health care professionals (HCP’s). I am not proud of this. I try not to lie outright to anyone but I definitely withhold some truths. I feel it is important to talk about this, because I know I am not alone.
Here is one secret. I don’t tell my endocrinologist about how often my blood sugar goes low, because I don’t believe there is much she can do. It is the downside of trying to achieve that elusive A1C. Of course I try not to go low. And I suffer the consequences when I do. Why have frustrating conversations about this unfortunate side effect of living on insulin?
I used to be more open. Then when I was pregnant with my twins a few years ago, I had a very upsetting conversation with a medical resident who kept focusing on my recorded lows. She made an ominous reference to the long term effects of hypoglycemia. It had not occurred to her to balance her comments with some kind of positive feedback about everything I was doing to keep healthy while I managed my diabetes and carried two babies. My endocrinologist came in to chat with me next, and she was much less anxious about my lows. However, I left with a lump in my throat and drove to my husband’s office to have a good cry. I kept hearing the resident’s words all day and couldn’t help but think ahead to my future. There is so much fear in diabetes health care.
I have other secrets but I am not comfortable revealing them. I am also an HCP, a clinical psychologist, and I wonder sometimes how honest my patients feel they can be with me.
Practising clinical psychology means that my job is to help people solve their problems. I can’t solve problems unless I listen to my patients. After all, they are the experts on their own thoughts and emotions. I listen to people talk about loss and heartache, and about challenges and victories. Sometimes my patients cry, but a lot of times we laugh too. It feels like such a privilege to be trusted with their most private thoughts and feelings.
As a patient with Type 1 myself, I understand the emotional impact of dealing with the physical and psychological demands of diabetes all day. From counselling other people with diabetes, I also recognize the impact of the health care system on the health of those of us with diabetes. I know I am not the only patient who keeps secrets from HCP’s. I hear other patients’ secrets.
Some patients have admitted to me that they do not test when they think their blood sugar is really high. Usually it is because they feel guilty about their lack of control and therefore are reluctant to see the evidence on their glucometer.
One woman admitted that she does not test when she thinks her result would be very high because when she meets with her diabetes team, the data is downloaded from her glucometer. She feels she must hide the hyperglycemia.
I have certainly heard many people admit to altering data on paper records. Not because they want to appear perfect. It is because they find the searches for answers frustrating and a waste of time. They are not comfortable saying so, or telling their specialists how they really want to spend their appointment time. They want their doctors to converse and to listen. “I’m listening,”: the two words patients most want to hear.
Eating disorders are common amongst women with diabetes. Many of these women would never tell their doctors or nurse educators that they struggle with disordered eating, or that part of the reason for their high A1C’s is that they go to bed with a high blood sugar after bingeing on carbohydrates. Their self loathing and shame leads to feeling so worthless that they do not bother taking insulin to cover the binge.
Patients have concerns that could be respectfully communicated to their diabetes team, but they usually keep these thoughts secret. They comment on how busy their clinics are, and how they wait so long to be seen, and then their appointments only take 5 minutes. One patient recently described waiting three hours to be seen by her endocrinologist! However, there is a power imbalance between patients and their HCP’s and it is hard to assert ourselves as patients.
Many people with diabetes describe feeling scolded sometimes, or judged. They feel rushed through their appointments. And they often note that they do not have much chance to talk about how they actually feel. They are directed, they are advised and they are sometimes silenced. Of course, these are their perceptions of their interactions with HCPs and I am not saying that they reflect the intentions of their HCPs. Of course perceptions are sometimes coloured by our own hurt, fear and anger about living with diabetes. However, patients should not leave their appointment thinking and feeling that way and being unable to share their emotions and feedback.
When I speak with patients who do feel supported, and heard, they are generally more motivated and engaged in their diabetes care. There is no doubt that having this kind of support helps patients cope with the challenges of diabetes. So what do we need to focus on to create more of this support in diabetes care?
Listening Enriches the Listener
Those who specialize in diabetes care genuinely care about their patients’ well being. However, they want to make them better and this “righting reflex” gets in the way of listening to their patients. Nurses, doctors, dieticians and other HCP’s do not always understand how important empathy and good communication skills are. Without them, their ability to use all their other medical knowledge is greatly diminished. Almost as important is the fact that when they connect with their patients, HCP’s enjoy the interaction more as well. The benefit does not just belong to the patient. Listening enriches the experience of the listener. One nurse educator told me, “It doesn’t feel like work because I do lots of listening. I enjoy it.”
Patients Need Support Before Advice
The most effective method of improving management of Type 1 diabetes will not look the same for every patient because everyone’s experience of Type 1 is unique. Additionally, each person’s situation can change. What works for a patient now may not work next year. In many cases, we jump in too quickly to try to “fix” the blood glucose control. Patients are directed, advised, educated…. but none of this will work as well if they do not feel connected to their health care team.
HCP’s need to ask their patients questions in order to determine the next step in treatment. The questions should be focussed on the patient’s expertise and knowledge.
“What would you like to work on today?”
“What baby steps could you take to tackle this problem?”
“Have you tried anything in the past that helped with this problem?”
Advice for Patients: Advocate for Yourself
Consider opening up to your doctor about how you feel in appointments. If you feel there is not time to talk about more than the numbers, say so. Don’t criticize their approach. (Always avoid statements that start with “You….”. Make an “I statement” and assert yourself. For example, “I have something important I want to talk about with you. Do you have a few minutes to listen?”)
I made a reference earlier to the negative conversation I had with a resident at my diabetes clinic. I later told a nurse manager about how those conversations can people with diabetes feel. My advice was to encourage residents to ask more questions. Suppose the resident had said to me, “I know it is hard when you are trying to keep your readings in range, but is there anything you can do to reduce the number of lows?” I would have had some ideas. And it would have been good for me to say them out loud and then put them into practice. However, the approach the resident used came across as shaming or judging, and it totally silenced me.
Advice for HCP’s: Connect Before you Correct
I have often heard HCP’s talk about their limited time for counselling, given all the other information they need to cover. I would suggest that with some patients, it would be better to put all the education aside for an appointment, and just connect with them. Connect before you correct.
If you are unsure what your patient needs, ask him. Involve your patient in agenda setting by asking, “How can we best use our time today?” I guarantee that this would grab your patient’s attention. You are correcting the power imbalance when you turn to your patient as the other expert in the room. If there are items you absolutely must include, then explain that you would like to share some information or ask some questions, but let your patient decide whose items come first on the agenda.
What a wonderful article — thanks so much for pointing out the importance that a few simple words can make.
Thank you so much for this article! I, too, have had doctors focus only on my numbers, and one said to me, after reading my labs, “You’ve been a bad girl!” WTH? She didn’t ask me any questions about the ‘why’ of my high A1c, just wrote another script and dismissed me. I never went back. Thankfully, I now have a wonderful PCP that does actually listen to me, and she is willing to tell me when she doesn’t know and tries to find answers. Physicians like this are rare, indeed.
Thank you for the link Carolyn! Dr. Montori’s work is so interesting.
Kathy and Beth, I agree that those types of physicians are wonderful to work with!
Thank you so much for such an honest and encouraging post. I am also an HCP with diabetes and relate so much to not bringing things up because i don’t feel there is much my diabetes team can do that is useful about it. My current endo is great, and actually one of the best things she does is let me cry sometimes and acknowledge that it is hard. doesn’t remove the problems but it does help!
Thanks so much Michelle. You have nailed an important issue that’s widely under-acknowledged in medicine, what Dr. Victor Montori and his Mayo Clinic-based team call “the burden of treatment” – and common not just among those diagnosed with diabetes, but in patients living with one or more chronic and progressive illnesses.
Are you familiar with Dr. Montori’s work on Minimally Disruptive Medicine? http://myheartsisters.org/2013/02/16/living-with-the-burden-of-treatment/
I think that part of the problem with communication with our diabetes healthcare team is that its usually based so strongly on the numbers. I can understand this and agree that its probably the best way, but sometimes there is a story behind the outlying numbers and sometimes there just isn’t. I want my doctor to do a glance at my numbers and then sit and listen to my narrative that goes with them. Then we’ll talk. I’m fortunate to have one that does that and it means a lot to me.