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Intended Consequences: An Interview with a 60-Year Veteran of Type I Diabetes

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After reading or listening to this article, you will:

  1. know the history of Type I Diabetes diagnosis and treatment
  2. be able to discuss the perspective of a patient with life-long Type I Diabetes
  3. know the basics of motivational interviewing


Welcome back to Safety Rules – a podcast brought to you by Safety First Nursing. SFN brings you education, resources and research to support patient and nurse safety. Please go to www.safetyfirstnursing.com to sign up for the newsletter to get the latest information on patient safety, as well as updates on Rose Katiana. Rose is the young Haitian woman we are sending to nursing school. SFN is sponsoring her journey in partnership with Consider Haiti, so follow along as we work together to support patient safety in Haiti.


This week I am on vacation, which means I am doing what I always do, just in a different location. We are having an amazing time jumping in lake Michigan, looking for beach glass, and eating until we pop. While here, I decided to take advantage of an amazing resource for patient safety, my father-in-law. Gary has been dealing with Type I Diabetes for over 60 years. He is one of the best and safest people I know – an amazing artist who raised 4 lovely men after losing his wife to cancer when my husband Wes was only 9 years old. We sat down to talk about his experiences with type I diabetes after a 20 miles bike ride through gently rolling Michigan countryside.

BACKGROUND ON TYPE I DIABETES

In 1910, english physiologist Sir Edward Albert Sharpey-Schafer discovered that Insulin is secreted from the pancreas, but until commercial production of insulin began in 1923, Type I Diabetes was a “death sentence”. Gary’s experience with type I diabetes begins in 1957, when urine glucose was the standard, and synthetic insulin and insulin pumps were still years away from first production.

Just a quick refresher: people with diabetes either have a total lack of insulin or too little insulin. Type I used to be called juvenile-onset, and is also called insulin-dependent diabetes affects only 5-15% of all diabetics. The body’s immune system destroys all insulin producing cells in the pancreas – without insulin the cells in the body can’t absorb glucose (sugar) which is needed for energy. Type II (formerly called adult-onset or non-insulin dependent diabetes) can develop at any age. It commonly appears during adulthood, but can affect children and teens. Type 2 is found I 90-95% of people with diabetes. In type 2, the body can’t use insulin correctly – having insulin resistance. As type 2 worsens, the pancreas may make less insulin, causing insulin deficiency. Type 1 diabetics commonly experience low blood sugar (hypoglycemia) whereas those with type II won’t have hypoglycemia unleass they are on insulin or other diabetic medications. Type I cannot be prevented, whereas type 2 can be prevented or delayed with a healthy lifestyle, including weight loss, eating well and exercising regularly. Complications of both include blindness, kidney failure, and increased risk of heart disease, stroke, foot and leg amputations. Treatment for type I includes infusion of insulin with a syringe, pen or pump, and blood sugars need to be checked 4-10 times daily. Type 2 can be treated with weight loss, bariatric surgery, controlling carbohydrate intake and physical activity, as well as oral diabetic medications. Type 2 changes over time and may mean more medication is needed to maintain control of blood glucose. Not everyone with Type 2 needs to check CBGs.

Treatment of diabetes has come a LONG way! Consider the story of the first insulin injection. Leonard Thomson, age 14, arrived at Toronto General Hospital on December 2, 1921 weighing only 65 lbs. He had been diagnosed with diabetes 2 years earlier. He was put on a 450 calorie per day diet and his blood glucose was usually around 504 mg/dl, and he was always acidotic. Doctors only expected him to live a few days. On January 11, 1922, Leonard was injected with insulin isolated from dog pancreas. The next day, his blood glucose was tested and had fallen from 441 to 320.4 but there was still a lot of sugar in his urine. Twelve days later, after working on purification techniques, they repeated the injection and Leonard’s blood glucose dropped from 520.2 to 120.6, with practically no sugar in his urine. In the following weeks he continued to get daily injections, with subsequent weight gain and strength. By February six other patients with diabetes had experienced positive results.

The biggest breakthrough in treatment was the discovery of insulin in 1921, but hypoglycemia continued to be an issue since monitoring was by urine testing, and was crude at best. Allergic reactions to insulin were common (impurities often were 80,000 parts per million – 8%). Modern insulin by comparison is less than 10 parts per million. Major improvements in the tools to manage Type I were developed in late 70s and early 80s with purified insulin in 1982, and the invention of pumps. Improvements in monitoring also helped. Self-monitoring of blood glucose and the introduction of hemoglobin A1c around the same time, allowed measurement of long term control.

Now that I’ve given you some background on diabetes, let’s get to the interview I did with Gary. I hope you enjoy reading or listening to it as much as I did doing it. Gary provides a great example of how even the perfect patient, who is dedicated to following all the rules for self-care, still experiences unintended consequences like hypoglycemia while driving. After the interview, I will talk about motivational interviewing, a technique that is useful to folks who are ready to make a change, but are struggling with ambivalence or mixed feelings and aren’t sure how to get started.

THE INTERVIEW

SFN: So my first question is how long have you been dealing with Type I Diabetes?

GM: You want exact dates?

SFN: They don’t have to be exact!

GM: Let’s see, sixty years and 4 months give or take

SFN: How old were you when you first found out you had it?

GM: 7, April fools day, 1957 was when I went into a coma

SFN: Do you remember what was happening?

GM: Prior to that I had a bout of measles before I went into a coma I had a bad case of hives, from what I have heard over the years about people who have type I diabetes a lot of times its kicked off by a virus. My grandfather was almost aware of what was going on – the symptoms – everything and he rushed me to a hospital. [it was] within a very short period of time after getting the hives – and I remember the huge welts. I vaguely remember being put in the backseat of his car. After that what I remember is waking up in an oxygen tent.

SFN: how did that feel?

GM: I don’t exactly recall…obviously there was anxiety for a 7 year old, either mom and dad were always there – and they slept in my room, one or the other, every night I was in the hospital for three weeks, but I got a huge box of toys (SFN – always nice). I was in Miami Hospital in Dayton Ohio.

SFN: Do you think you understood what was happening?

GM: I knew I was getting shots every day, and I wasn’t able to eat exactly everything I wanted to. Back then it was just NPH insulin.

SFN: So what was the regimen when you went home?

GM: Dad was the one who would give me shots in the morning. Back then there were needles that dad would sharpen on an emery board we had to sterilize and keep [them] in alcohol. We didn’t sterilize them every day, we would boil them in distilled water maybe twice a week. Before too long I was practicing on an orange, I learned how to give myself a shot.

SFN: how old were you?

GM: I was 7, it was in that first year. I know I remember the first time I did it, I was sitting in the living room and it took forever, and I couldn’t throw it in like a dart – I pushed it in – and I’m still doing that today. The needles are probably a third the size of the original.

SFN: so that’s something that’s changed over the years, you’ve seen the needles get smaller and shorter and more sterile and more disposable.

How do you find out about advances in care?

GM: Ever since day one, I see a doctor at least twice a year, the first couple years more than that. I got information through the physicians that I saw.

SFN: and have you seen specialists?

GM: I’m right now seeing an endocrinologist once or twice a year, and I see my regular doctor, who is pretty good at least twice a year, an ophthalmologist once a year, I’ve been to a podiatrist and a pulmonary doc

SFN: I noticed you were talking about when you were 7, getting shots, but what about checking blood sugars?

GM: HA! Back then it was urinalysis and the problem with that is what you’re seeing is 5 hours before, so when they came out with actually testing blood sugar, and I could find out what my blood sugar was at the time. I would say I probably didn’t start testing blood sugar until 1980-ish

SFN: when did they start checking A1Cs for glycemic control?

GM: It was just part of the labs…go in once, twice a year to get my labs and that would be part of it. And back then probably what they normally said is “oh your labs look good”

SFN: Pretty much your whole life have you had tight glycemic control?

GM: (Laughs) NO (laughter) When I was younger, see I grew up with four brothers and they were normal, and my dad liked sweets too, and I would sneak, steal, whatever – sweets all the time. I also went trick or treating because the folks wanted to keep me as normal as possible. So I would get bags of regular sugar candy, and as I was trick or treating (mimes eating candy) so my blood sugar was probably just way off the rack.

SFN: do you remember how that made you feel?

GM: I remember one Halloween that I went trick or treating and I got back and had to lay down on the couch and I admitted to my mother that I probably over did it a little bit. (Laughter) I remember in college I was active – I played baseball and basketball and tennis growing up and that was I think, part of my saving grace (13:33) I honestly don’t consider myself a controlled diabetic when I was in school, growing up. When I was in college, I went to my doctor, he took a blood sugar on me and it was over 700 and he looked at me going “I don’t understand why you’re still standing here”

SFN: you just tolerated it

GM: yeah, and what he thought was your blood sugar just kept increasing gradually and your body kinda got used to it. At that point I started watching it a bit closer. Until things changed and I could actually know what my blood sugar was it was still king of a hit and miss thing. The insulins changed over the years and that was another huge deal for me in my control. Once Humalog, Novalog came out and the peak period was only one hour as opposed to 8, 12, whatever, and I was put on Lantus also as a baseline insulin things started to move in [a] good direction and at that point my A1c’s were probably anywhere from 7.2 to 6.2 and they have actually been that way ever since. Once I started coming to a Dr. in Grand Rapids, he at one point called me the poster child for type I diabetes. He gave examples of people who were 20 years younger than I was doing terrible, losing eyesight, kidney failure, terrible stuff.

SFN: and you and I just went on a 20 mile bike ride, so I think you are still the poster child, I mean, how old are you now? 67?

GM: 67

SFN: and you are renovating your house and not having any issues…I think its amazing

GM: I suppose part of it too is if I take my blood sugar and it’s 210 I know what I have to do about it and I take care of it and I don’t worry about it. It’s never been a huge deal. When it was 700 I needed to do something (laughter), maybe I should start worrying , but again, I was active and that helped alot not to say I didn’t overeat some of the stuff I shouldn’t have. I’ve learned.

SFN: Do you think having type I has had an impact on who you are? Do you think you would have been a different person without it?

GM: (Laughs) well it has to have had some affect. When I was younger it was embarrassing when I had to go into the restroom to give myself a shot. I remember one of my first years at camp I had to keep my insulin in the refrigerator in the kitchen of the dining room, so I had to go there in the morning after I got dressed and get my insulin out, and one morning at camp the camp directors daughter was real curious and wanted to see how I gave myself a shot, well I was wearing pants that day, which means I had to take my pants down to do it and I’m going nope, this ain’t working (laughter) so I found a restroom.

I was always somewhat watching what I ate, at parties or wherever I went, especially if there was an adult around, “Yeah sure I’ll eat that, give me a couple pieces of cake”

SFN: So tell me, if you don’t mind sharing, what your daily routine is now

GM: Go out take my blood sugar, take my insulin, deciding what I’m going to eat for breakfast, because I’m on a sliding scale with Novolog depending on how many carbs I intake, so it’s a crapshoot sometimes, you can’t know exactly how many carbs you’ll be eating

SFN: Can you give me an example?

GM: I usually check the labels of the stuff. I eat a lot of organic oatmeal so I check the label on the side and if it’s 30 grams of carbohydrates then I adjust for how many units, plus the milk plus the juice and if I ate fruit beyond that

I check my blood sugars probably 5-6 times a day. Just like today before the bike ride, I check it, and if it’s not high enough or I’m not comfortable enough where it is because I know I’m going to burn some of that down, I will fortify with some…

SFN: What was it today before our bike ride?

GM: It was 130, so I ate some stuff

SFN: So you felt that was a little low

GM: Even before I go to bed, if my blood sugar is below 160, I get hypoglycemic at night, or really get close to it, so it’s gotta be above 160 or at that level before I go to bed.

SFN: And if it’s not, what do you do?

GM: Eat something, if I’m in a hurry I’ll just grab some orange juice or something like that. If I have time, I will eat some complex carbs that will last a little longer.

SFN: What would you say your biggest challenges are day to day managing your diabetes?

GM: My biggest issue is my wife – she worries about me getting hypoglycemic while I’m working on a project because a lot of times I will keep on going past the 6 o’clock hour, which is the normal time for us to eat. And I will come in and she can tell if my blood sugar is low, and she gets a bit upset with me for waiting that long.

SFN: How do you feel about that?

GM: I know she’s doing it because she cares about me.

SFN: Is there a way, thinking about someone who might be listening to this or reading this and you want to help caregivers better understand how to communicate with the person with diabetes; what would be a better way for people to communicate with you when they are worried about you? What would you prefer?

GM: Not being demanding: “you need to take something” and even my sister-in-law has done that in the past. I’ve been visiting their house, and she’s an ER nurse and it’s one of those things, “you need to take this”

If my blood sugar is low, I have a confused state, I’m in a confused state. But I have been there by myself before and was able to react to it. It takes me a little more time to analyze things, so suggesting things calmly, saying you know, you look like you have low blood sugar, can I get you something

SFN: and if you say “no” to respect that

GM: yes, or “I’ll get it”

SFN: yes, because I’m sure with something like a chronic illness, independence is important

GM: Yeah, and it’s gotten to a point where I feel like I should be able to handle it, that’s the enemy. The other thing is, there was a point at which I was driving, my blood sugar was real low. I was on the highway and I was not going side to side, but I was going off on the shoulder, and then I got on the side street and I was hitting curbs

SFN: Oh that is so scary

GM: Not only that, I passed out right before a red light, and luckily I was not going that fast at that point and almost coasted into the back of an SUV, which stopped. I scratched the bumper of the SUV and kinda smashed my front end.

SFN: And how long ago was that?

GM: A little over three years ago

SFN: And what do you think caused that? What happened?

GM: I was looking for a birthday present, couldn’t find it a couple places, so I drove to another place. I felt my blood sugar was getting low, and I took a couple glucose tabs, but it was lower than I thought and I didn’t take the time to check it.

SFN: that’s that unawareness we have when we get hypoglycemic.

GM: I probably should have taken 5 glucose tabs, and just checked, and sat there until I was sure I was ready. But I decided I needed to get this done.

SFN: So what happened after that?

GM: They revoked or suspended my drivers license for 6 months, and that’s why I started checking my blood sugar 6 times a day

SFN: before that how often did you check it?

GM: It was probably 3-4

SFN: So you have modified your routine based on that health scare?

GM: oh yeah

SFN: Have you had anything happen recently?

GM: Nothing close to that. Within the last 3-4 weeks, I have had, I’ve been hypoglycemic, but I’ve been at home and Kathy could see it and she was right on top of it.

SFN: What do you think has been causing that?

GM: More physical activity, waiting longer than I should to eat is probably the biggest thing

SFN: Are you going to make any changes to deal with that?

GM: I have been coming inside to eat more snacks and checking blood sugar more often, but you know the closer you hold your blood sugar in control. The less it takes for you to go hypoglycemic

SFN: Any other advice you would give to caregivers, professionals or family members for how to best support people dealing with type I diabetes?

GM: Test your blood sugar. I actually had to go through hoops to get Medicare and my insurance company to pay for the six times a day. Medicare says, we will pay for three times a day. How can you actually control your diabetes doing it three times a day? Young people that have Type I diabetes, they’re told to check 5-6 times a day. Old people should be able to do that too.

SFN: What about the pump?

GM: I think because I am so active, I honestly feel it would be cumbersome, and because of the fact that I am doing pretty well, I don’t want anything to do with it, but that’s me. I know Doctors that have them that are Type I.

SFN: Has your Doctor recommended it?

GM: It’s been discussed

SFN: So it’s an option

GM: It’s not something I would jump at. But getting back to what I would suggest people [do] other than testing blood sugars, and again it’s hard to tell someone they need to cut back on bad food, but be reasonable about it. Get off your ass: walk, if you are overweight, be as active as you can to lose some pounds. When I don’t exercise, I feel I didn’t have a complete day. It’s a lifestyle change, and once you get at it and realize how much better you feel and look, you have more energy and you can deal with emotional and psychological things better, it’s all good.

SFN: So on a scale of 1-10, 10 being the best self-care – someone who follows every single rule for Type I diabetes, and 1 being the worst – the person who doesn’t do anything they are supposed to do, where do you think you would fall?

GM: Seven and a half.

SFN: What would it take to get you to an 8 or 8.5?

GM: (Laughs) Consciously decide that sugar is really bad, although it’s good because Stevia has been around for a while, even coconut sugar metabolizes so much better for a diabetic than regular processed stuff. If I want sweet stuff, I should bake it myself and put the right stuff in it.

SFN: Yeah, you can make a lot of stuff with erithrytol, xylitol –the sugar alcohols that don’t affect your blood sugar and Stevia

GM: A lot of times I will buy protein bars that have sugar alcohols in them

SFN: I will give you my recipe for peanut butter pie with Stevia, it will knock your socks off

I’m going to be doing more interviews and I want to ask you some standard questions about the topic I am interested in, which is safety, do you mind if I ask you about those? We will see what happens – you’re my guinea pig.

So how do you define the word safety in your own life?

GM: Thinking ahead about consequences. When I had the scaffolding here, I was very aware of where the grab-holds were, the ladder rungs, things like that. I’m older now, and I’ve tripped or fallen enough to know that it doesn’t take much

SFN: We call that creating a mental image, and people who do that have better outcomes – you are using a really good strategy

GM: Yeah, well

SFN: I really like that word consequences that you’re focusing on, that’s nice

GM: Well it’s true, everybody, in every situation, any decision you make has consequences. It can be positive, it can be neutral, that doesn’t ripple the water too much, or it can be a real bad consequence, whether it’s a parent giving a consequence to a kid, or the kid actually deciding that I’m gonna ride my bike across the street and not looking, that’s a consequence they could have happen

SFN: Last question, if you’re willing to share. What is the most unsafe thing you thing you have ever done? What is the first thing that pops into your head?

GM: Two things pop into my head, one absolutely was driving with low blood sugar no question about it, and the other one was when I was younger driving with too much alcohol in my blood, but not remembering the trip, so I don’t do that anymore either (laughter).

SFN: Alright Mr. Miller, is there anything you wished I had asked you that I didn’t ask you?

GM: Bottom line? It’s your responsibility. I have gone through this enough because of family and friends, you can talk until you are blue in the face, and give a person so many reasons they shouldn’t be drinking smoking, doing whatever they are doing that is not good, but until they want to change their attitude or their lifestyle, there is nothing you can do.

SFN: You hit the nail on the head. If people don’t want to make a change…

GM: If there’s no consequences that they can see

SFN: or that matter to them

GM: that’s the problem with diabetes too, is that, you’ve got somebody in their 30’s or 40’s who isn’t taking many blood sugars and eating what they damn well please, they don’t realize their kidneys are failing, their eyesight is getting worse

SFN: the long-term consequences

GM: Yes, and it takes a long time for it to happen, but if you do it long enough, it will happen.

SFN: and that is why you are the poster child. We’re going to make a poster (laughs)

GM: Right, I don’t want my face on anything!

SFN: thank you so much!

MOTIVATIONAL INTERVIEWING

While I was doing this interview, I thought about all the patients I have talked to who are like Gary in that they know what they are supposed to be doing, they know the right thing to do, but they continue to make choices that don’t necessarily support optimal health. With Gary, he is aware that he eats too much sugar, and that he could be more consistent with checking his blood sugars, and with exercise. One thing we do know as nurses, is that simply telling a patient to do something doesn’t usually work. There are many techniques for getting a patient, loved one, family member to realize that they need to make changes, and to support them in making those changes. One of my favorite techniques is motivational interviewing, or MI. MI was first discussed by Miller and Rollnick in 1991, and has been used successfully to help people change addictive behaviors – it’s a style of counseling that can help resolve the mixed feelings that prevents clients from realizing personal goals.

Miller and Rollnick state, “Motivational interviewing is a way of being with a client, not just a set of techniques for doing counseling.”

I am not an experience practitioner of MI, but I try to remember to use some of the principles when I see a person struggling with something they actually want to do, but can’t seem to find a way to do it. It’s normal to have mixed feelings about illness, and presenting acceptance of those feelings is the first step of MI – don’t judge (easy to say, hard to do!). MI operates under the assumption that an empathetic, supportive, yet directive style provides conditions under which change can occur. When you argue or get aggressive, the confrontation can increase defensiveness and reduce the likelihood of behavioral change.

The 5 basics of MI:

  1. Express empathy through reflective listening.
  2. Develop discrepancy between clients’ goals or values and their current behavior.
  3. Avoid argument and direct confrontation.
  4. Adjust to client resistance rather than opposing it directly.
  5. Support self-efficacy and optimism.

The biggest tool is the readiness ruler –where you try to move the client from talking about reasons “why not”, to reasons “why” they should make a change. You can use the readiness ruler by asking, “How ready are you to make a change?” On a scale of 1-10, with 10 being the most ready and 1 being not at all ready. You can then follow up with, “How could you move from this number to a higher number?” and, “Why didn’t you rate yourself lower?”. The client is coming up with the answers and solutions, not you – making it much easier for the client to be open to change. A final question before finishing the session is, “On scale of 1-10, how confident are you that you can make a change?” When you meet the client again, you can follow up on these questions to see how effective the client’s ideas have been, and make modifications as needed.

As you can see, motivational interviewing is a tool that focuses on building motivation for and reducing resistance to behavior change. And as you can see, my father-in-law, just like anyone else who has dealt with health issues, wants to do the right thing. Sometimes using the right tools can support people in accomplishing what they know they need to do.

Please check out the resource page for this article because there are great tools for motivational interviewing, including a book, website and Youtube videos that model how to do it.

References and Resources

Miller W. R., Rollnick S. (2013). Motivational Interviewing: Preparing People for Change, 3rd Edn. New York, NY: Guildford Press.

History of Type I (Insulin Dependent) Diabetes – ADA

History of Insulin

Motivational Interviewing

Finding Your Way to Change: How the Power of Motivational Interviewing Can Reveal What You Want and Help you Get There. (2015) Zuckoff & Gorscak.

Video on Motivational Interviewing

Video of good example of motivational interviewing

Tools for MI

Motivational Interviewing as a Counseling Style

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