What would improve your experience at the clinician's office? We asked this question of several chronic illness patients and their caregivers, and while the health conditions in play were diverse, a few common threads emerged in their answers: empathy, respect, and experience.
Stacey, mother of a child with type 1 diabetes, ""Hi, my name is..." I'm amazed how many pediatric nurses don't do this. Please don't touch my kiddo until you say hi and introduce yourself. As a parent of a T1D child, I find myself constantly teaching him respectful ways to assert himself at checkups, etc."
"I'm torqued before I even get to see the clinician," offered chronic illness patient Christel. "'Here's the paperwork you need to fill out in pen with all of your medical history.' Wait 45 minutes. No idea what's going on, because when you ask, the front desk people say they have no idea what's going on and when I'll be seen. Put in an exam room and the 'pre-show' begins: No one reads the paperwork. Everything I've just written down is asked again - without looking at the paperwork. And then ... stuck in an exam room with no idea when you'll be seen because the last person says the clinician will be in to see you in a 'little while.' I get that they're double and triple booked - I get that clinicians are under tremendous stress - I get that the system is broken, but until you solve the front end before you see the clinician, the system will stay broken."
Sarah lives with diabetes and feels that more time would improve the relationship most of all. "More face to face time so that the doctor or CDE can not only suggest changes but also an open discussion time to go over their thought process to achieve [those changes]."
People living with chronic illness repeatedly brought up the need to be heard by their clinicians - to be heard and to have their health issues seen in a realistic context. Emily, a patient with chronic illness, shared, "Not being talked down to and being asked ridiculous questions, like 'I see your sugar was 350 on jan 27th, why is that?' That was 3 months ago, I have NO Idea."
"Check the judgement at the door - yes, you have a medical degree but I am the one living with the disease," said Stacey, who lives with multiple chronic illnesses. "Respect that and the fact that I may likely know my body better than you do so please be a partner in my care not a dictator." And fellow chronic illness patient Kate added that she wants to have her concerns heard and acknowledged, not dismissed.
Renza said, "Also, maybe some information about online and face-to-face peer opportunities, where I can find stories of others living with the same condition so I don't feel like I'm the only one navigating this thing, and an understanding that while I may be there to see them about diabetes, diabetes is not the only thing in my life."
Patients want to be seen as people, and to have their healthcare experiences delivered and received with care and kindness. They want their time, concerns, and lived health experience respected and valued as much as their clinician's agenda. Unfortunately, many of the responses showed a lack of kind and caring healthcare, or even an awareness that people deserve this level of empathic care in the first place. Karli, a caregiver, said, "Your questions lately are raising my blood pressure. I didn't know I had so much suppressed rage about medical care. It also makes me realize that no one ever asks these questions!"
Not all clinical encounters are difficult. Good clinician/patient relationships exist, and are highly valued. One patient equated finding the right clinician is like going on a date. "You need to find a good fit, personality wise, that you can trust with your health concerns. That person needs to have a connection with me, not simply an understanding of the specifics of my disease." Briley, living with chronic illness since childhood, added, "Right now I wish for immortality of awesome providers so they didn't need to retire."
There is a common thread in all these stories; how meaningful it can be when you feel seen and heard and how disappointing it is when you don't.
Do these stories resonate with you? Have you ever thought about sharing these feelings with your clinician? What do you think would happen if you did? Give it a try with the Plan Your Conversation Cards (printable version and digital edition) and tell us about it.