This was the title of an ADA session led by a panel of people with diabetes, including familiar faces from the Diabetes Online Community - it was fantastic!

Empathy, compassion, and language ALL matter in life and life with diabetes.

There are right and wrong ways for healthcare professionals to discuss diabetes and diabetes complications.

The right way starts with empathy, compassion, and an understanding that blame and shame re: diabetes complications doesn’t work - and has the ability to make things worse for the person living with diabetes - both mentally and physically.

Chaired by Korey Hood, PhD. the PWD panel included Kerri Sparling, Chris Aldred, Ina Mendoza, and Matthew Heywood, MPH.

From the time we are diagnosed, developing diabetes complications is used as a threat for people with diabetes to fly right.

Panel member Kerri Sparling stated: Complications were dangled with this carrot of fear if my family didn’t take good care of me. Complications are often positioned as the person with diabetes NOT taking care of themselves.

That’s not the case.

Key Takeaways

Providers need to be coached and learn to be positive - empathy makes all the difference.

Healthcare Pros must stop pointing fingers re: diabetes complications.

Genetics play a BIG part in the development of diabetes complications - providers need to remember that.

To paraphrase Chris Aldred: We did the best we could with the diabetes tools we were given at the time we were diagnosed, and up until today.

Healthcare professionals must talk to and with a person about their complication diagnosis, not the computer, nurse or attending.

Talking to and about the person as a whole - not their complication - is key.

People living with diabetes need advice that can be easily integrated into their lives.

Diabetes success stories are great, but we also need to hear about those living with complications that are not often discussed - those recently diagnosed with depression, retinopathy, kidney issues, and other D complications.

How are they coping, what treatments and resources are they finding helpful?

Panel member and T2 Ina Mendoza reminded the room that PTSD plays a big part in diabetes. Ina was diagnosed at the age of 35 with T2 - the exact age as her mother passed due to complications from Type 2.

How could that not have major ramifications on her psychological state and approach to self-care?

Positive reinforcement is needed and incredibly appreciated.

Matthew Heywood told the room: If my HCP tells me good job for checking my bg - it’s not about the number. It’s that I’m checking.

Kerri reminded those of us with diabetes sitting in the session, that the healthcare system isn’t the enemy and that we as patients need to have empathy for doctors as well.

Doctors need to have empathy and compassion encouraged in medical school, not drummed out of them.

Speaking of words…

Language Matters - Improving Communications in Diabetes Care - a session, Chaired by Jane K. Kadohiro, DrPH, APRN, CDE, FAADE and including amazing Healthcare Pros!

Let’s Get Started With The Key Takeaways!

Jane K. Dickinson RN PhD, CDE opened by informing the room that labels lead to biases which directly impact the way we interact with people.

Paraphrasing Jane: Carefully chosen language can have a positive impact, poor language a negative. What you say and how you say it matters - and has staying power.

Joe Solowiejczyk RN, MSW, CDE, T1D told the crowd:

It’s not about fixing - it’s more about healing - having our experiences validated in a non-judgmental way. Same goes for your posture - as in head and heart - your message should be from your head but informed by your heart.

Joe told those in attendance: It’s our job to sell diabetes care so that our patients have courage, determination and energy for their own health care.

SideBar: I was the third patient that Joe Solo treated. 

I was eight. I didn’t know he was my Pediatric CDE/Nurse/Therapist /whatever - I just knew that Joe was my very first friend with diabetes.

He'd allow me to share without judgement and always encouraged, Joe changed my world for the better - and I will be forever grateful.

Positive acknowledgement and validation works wonders.

Kindness counts.

It’s not always about the numbers.

Dr. Kevin Joiner PhD, APRN, ANP-BC, CDE mentioned that approaches to reduce stigma in healthcare means training every person who interacts with patients - requiring a long term commitment by stakeholders in order to dismantle diabetes stigma across the board.

Diabetes stigma is prevalent across cultures.

Diabetes, especially T2 is stigmatized in the healthcare system.

Dr. Jane Speight MSc, PhD, CPsychol, FBPsS reminded the room that one of the many consequences of diabetes stigma is the person with diabetes not attending self-management education programs.

When it comes to strategies to improve communication between both patient and provider, I’ll paraphrase professor Jane Speight.

It’s all about R-E-S-P-E-C-T!

Evidence-based strategies that improve communication means Healthcare Professionals must embrace “waiting” and learn to be comfortable with silence.

Why? Interruptions by HCPs listening to a person’s health care agenda has a median interruption time of 11 seconds.

Most clinicians communicate well, but underestimate their abilities in this area. They lack confidence and don't think enough about the power of their words.

Want better communication in healthcare?

Get your T-L-C on: Trust. Listening. Communication.

Showing empathy and respect increases honesty, medication taking and self-care. 

Provider Burnout & Diabetes Burnout are incredibly similar - both are emotionally exhausting, make the person feel de-personalized and decreases the person’s sense of accomplishment.

My Thoughts On Both Sessions

People with diabetes and healthcare professionals need to work in tandem and as a team - empathy and compassion are needed on both sides.

Open discussions and encouragement need to be increased. Diabetes blaming and shaming needs to cease.

Behavioral Health specialists must have a seat at the table when it comes to diabetes care and treatment. People with diabetes need access to Behavioral Health services/specialists without fear of labels or costs, in order to develop positive and empowering coping mechanisms in our lives and our lives with diabetes - including complications.

Words have weight and words are powerful.

People with diabetes remember every kind word and phrase our HCPs have uttered to us - and every unkind phrase. 

Respect is paramount.

Lastly, we are in this together - healthcare professionals and people with diabetes working as a unified team empowers us all!

Day 2 of ADA 2019 began with an early morning session focusing on nutrition therapy for adults with diabetes.

I was prepared to be on the defensive - because as a person with diabetes, I’m always playing defense when it comes to food and nutrition, defending my food and insulin choices (currently, and since my initial diagnoses as a child,) to both non-healthcare professionals and pros alike.

No need for defensive plays - this session was informative and affirming as a person living with diabetes trying to maneuver the nutritional landscape of diabetes management.

Janice McCloud, MA, RDN, CDE asked the question: Are nutrition and diabetes education interventions effective in improving outcomes?

The answer was a resounding YES.

Research supports the success and cost effectiveness of nutrition therapy and indicates that nutritional therapy is a paramount component of diabetes care.

Nutrition Research is also more complicated than astrophysics - because people don’t eat nutrients they eat food.

Sidebar: This would be the moment when I almost yelled PREACH from my seat.

Evidence in the form of clinical expertise and experience, combined with patients’ own life experiences, form the cornerstones of the shared decision making process re: nutrition and diabetes.

It needs to be collaborative because people with diabetes bring expertise in nutrition management of their own diabetes to the table.

Other Key Takeaways from this session:

• Healthcare Professionals want their clients to enjoy healthy food and fellowship with family and friends - not deprive them. In my heart I always knew this to be true, but decades of being judged on every carb I put in my body clouded that fact. I was glad for the reminder.
• Low carb diets are best for lowering A1c: Mediterranean, Paleo.
• However, the low carb approach works for 6 months and then gets “fuzzy.”
• For lower glucose, studies point to the Mediterranean diet.
• T1D nutrition research has focused mostly on the strategy of carb counting, rather than eating patterns - that needs to change.
• Collaboration is key! I knew that but it was nice to officially hear it!

Tim Garvey reminded everyone in the room of the pathophysiology of obesity. Hormones that make us eat go up, those that make us eat less go down, energy expenditure goes down. It’s not the patient’s “fault.”

Ph.D., Christopher Gardener refuses to use the word “diet," replacing it with EATING PLAN.  He also believes that Language needs to shift re: diabetes and food.

Let’s all stop fighting and find out what works best and is culturally appropriate! Let food bring joy!

YES, Customize food plans to the needs of the person/individual!

Sidebar: Gardener made sure to say that he didn't want study participants to be HUNGRY or HANGRY.

Kelly M. Rawlings, MS, PWD discussed translation into practice and how it works re: diabetes in the real world. She pointed out that diabetes and medical nutrition therapy always comes back to the person’s WHY and should be customized to them.

YES!

My Thoughts: Let’s retire the word “diet” and replace it with terms like food plans or food choices.

Nothing about diabetes is normal, including equating food with numbers and labeling food as good or bad.  Language matters - we all need to stop doing that!

Diabetes isn’t one size fits all; customization is key, and diabetes treatment, including meal plans and choices, should be tailor fit - not produced for the masses. 

To add or not to add? SGLT inhibitors in type 1 diabetes

Another session I attended was in the form of a debate in real time between two opposing health care professionals POV re: SGLT inhibitors used as an add-on therapy in Type 1 diabetes, stuck in my head long after it was over.

Sidebar: Normally I’m a big proponent of diabetes treatment and add-on therapies/choices.

People with diabetes need options that allow for customization or escalation of treatment, because the longer a person lives with Type 1, insulin resistance and other issues become a reality. 

PROS (Dr. Bruce A. Perkins)

Discussed SGLT diabetes trials in both Type 1 and Type 2 that showed a reduction in body weight, blood pressure, hypos, and daily insulin doses - all good stuff.

But participants also had increased risk of DKA (both T1 and T2,) with the occurrence of DKA being higher in Type1s.

Red flag for sure, until it was pointed out that there were issues in the beginning re: blood sugar issues in insulin pump therapy studies/trials and how the industry has adapted to lessen the risks.

At this point, I was mostly in agreement, especially when Professor Perkins (who has T1 himself) declared: It's about patient choice, supporting people to choose the best therapy for them, understanding the risks and how to lower them. People with diabetes need flexible therapies.

CONS (Dr. David M. Nathan)

The opposing POV was presented by Dr. David Nathan, who strongly believes the risks of SGLT2 inhibitors outweigh the benefits and felt that certain details in the debate were “glossed over,” pointing out that there wasn’t evidence as of yet in Type 1 that SGLT2 inhibitors reduce the risk of cardiovascular disease.

His closing statement: T1s using SGLT2 inhibitors had higher results for mycotic infections, as in: DKA, UTIs, yeast infections, and unfortunately for some, Fournier’s Gangrene.

Fournier’s Gangrene is a hard stop for me.

I’m not going into details. GOOGLE IT.

Who Won The Debate?

I’m not sure.

Intel implied the jury was locked.

Some in the audience felt more studies needed to be done.

Others believed science and industry should work through it until adaptions are made and risks are lessened, some suggested allowing the person with diabetes to ultimately decide.

My Opinion: Add-on medications (potentially using T2 and non-diabetes meds) in addition to insulin therapy for people living with T1 are needed and necessary.

But Fournier’s Gangrene? NOPE. I’m out!

The first day of the American Diabetes Association 79th Scientific Sessions was equal parts of fantastic and overwhelming - which always seems to be the case when surrounded by 30,000 diabetes professionals.

The vibe: Energetic and filled with hope.

Day one was all about three key topics for me: Diabetes apps, shared decision making when choosing pumps and sensors, and timing of when we eat and the impact that has.

Session One Highlights

This session covered digital apps for diabetes treatment, and the opportunities and challenges that diabetes apps present for both healthcare professionals and people with diabetes.

Courtney Lias, PhD, from the FDA, a huge fan of diabetes related digital apps, stated (I’m paraphrasing) that diabetes devices are key for management, can be overwhelming for those wearing them, and need to be made easier and more integrated - including mobile apps!

AGREED. As a T1D, I require apps to be empathetic, affordable, and able to be used with diabetes devices across the board (as in diabetes hardware that works for me as an individual and is covered by my health insurance… Or not), as well as my preferred smart phone of choice.

Steven Edelman, MD, and PhD John R. Petrie, provided the POV from diabetes healthcare professionals in the trenches.

Edelman opened pointing out the obvious: Endo’s offices are simultaneously overwhelmed and short staffed, and that the United States healthcare system is broken - it’s all tied to the number of patients seen on any given day/hour, and that in the real world, most physicians have no time to learn about apps.

With that being said, Edelman believes apps that move the ball forward are helping patients engage in their diabetes management successfully. “There are a ton of apps out there. If your patients aren’t motivated or engaged, if  the app doesn’t improve empathy of the HCP, patients won’t use it.”

Petrie brought up this spot-on advice re: diabetes apps: If my patient tells me about the app and I’m using it - that's a good indicator.

Simple and  KEY Closing: Know your audience - does your patient even own a smart phone?

Session Two Highlights 

No matter the diabetes tech, diabetes distress is rampant.

Psychosocial tools and techniques must be used to alleviate this where possible and empower PWDs.

Acknowledge, ask, and listen are key principles. The advice was to use ADA's Psychosocial position statement to support & empower people with diabetes.

IMO, the ability to upload data is great, as is the fear of being judged.

The latter has the potential to become a mental barrier for many uploading diabetes data and benefitting from digital diabetes management solutions.

Pumps have different settings and benefits, so healthcare professionals need to teach and encourage people wearing them to use all the bells and whistles insulin pumps offer.

Pump, CGM, Meter, Coverage.

Make sure patients double check insurance coverage re: Pharmacy Benefits verses Durable Medical Equipment benefits. The difference in pricing can be astronomical and is often the deciding factor in the person with diabetes moving forward with their chosen technology.

Device placement and rotation is key - but certain devices are only approved for certain sites on paper making it tough re: rotation in real life.

Example: FDA approved CGM placement is quite different from patient placement of CGM sites. Google and discuss off-label site options.  

Re: hybrid closed loop systems:

40% of clinicians in a recent survey reported finding it difficult to keep up with advances of D tech.

Session Three Highlights

Intermittent fasting (IF) isn't about cutting caloric intake, it’s about carving out an 8-10 hour eating window earlier in the day and utilizing our circadian clocks, which are influenced by when we receive light, eat, move and sleep.

IF changes metabolic switching, causing weight loss relative to controls.

HANGRY is a big drawback re: Intermittent Fasting.

Not all IF approaches are equally beneficial.

Data shows that mornings are better to eat according to the glycemic rhythm.

In a randomized study: Women who ate larger breakfasts and smaller dinners lost more weight than those who did the opposite.

Studies have also indicated that “eating breakfast like a queen and dinner like a pauper” helps women with polycystic ovary syndrome re: ovulation.

Intermittent Fasting in rodents resulted in greater weight loss, improved fat mobilization, lower glucose and insulin levels, improved lipid profile, blood pressure, and slow cell proliferation. Interesting results that should be further studied in humans.

(IF) also showed a reduction in inflammation, oxidative stress, and slowed aging.

You bet that got my attention!

I was surprised to learn (IF) doesn’t need to be practiced every day to have benefits.

I don’t believe in extreme anything when it comes to diets and diabetes, but I thought the subject of meal timing was interesting and worth looking into!