Co-production of diabetes care: Not doing me justice

Dr. Maren Batalden’s story:

In a diabetes group, a woman who was being seen by one my colleagues said to her doctor:  “Why are you so obsessed with this blood sugar number [Hemoglobin A1c]?!  In so many ways I’m so much healthier:  I’m eating better, exercising, losing weight.  I have a job, and I’m not drinking like I was six months ago.  I feel so good, and so empowered and supported by this group.  But my HgbA1C hasn’t moved yet.  I feel like these measures are not actually doing me justice.”  

Hemoglobin A1C is a blood test which measures average blood sugars over a three month period.  Doctors and patients use it to evaluate the degree to which a person’s diabetes has been “in control” in recent months. Ultimately the HbA1c should reflect the positive changes that the woman above is making, but sometimes it takes a while.  We have to be patient with that process.  Sometimes a person with diabetes needs to focus on some more foundational life changes that will eventually be reflected in the blood test, but may take several months to manifest.

Our efforts to measure and improve health outcomes in chronic diseases like diabetes have become “performance measures” for health professionals by which payers evaluate the “quality” of care being provided. In a subtle way, this has confused us about the nature of health professional work.  We’ve come to see numbers like the Hemoglobin A1c as if they are something that health professionals produce.  In fact, of course, numbers like these are co-produced by patients and health professionals working together.  In fact, blood sugar is largely controlled by people with diabetes – not their nurses and doctors and nutritionists. Blood sugar is determined by the everyday decisions of a person with diabetes -- what they eat and how they exercise.  The doctor is a bit player.  The doctor prescribes medication, helps to decide when it’s time to start insulin, or go up on a dose, and does a little teaching.  But most of the learning happens outside of the clinic, in the life of the person with diabetes in relationship with their families, by trial and error.

If they care about health outcomes for their patients, health professionals need to reframe their work.  Health professionals need to ask themselves not “How can I be successful in lowering my patient’s hemoglobin A1C” but rather “How can I be most useful, most helpful, most supportive to the person with diabetes who is already working in whatever way he or she can to be healthy?”

Thanks to Dr. Maren Batalden for her story.  Read Dr. Batalden's article on co-production, mentioned by the Institute for Healthcare Improvement today.

Pharmacist-led diabetes disease management: She felt so empowered!

Sandra Leal’s story:

[Sandra and her clinic won the Pinnacle Award last month from the American Pharmacists Association for her clinical pharmacist-led diabetes disease management program.]

My patient Maria is an older woman on Medicare.  I started seeing her in May.  Her a1C [blood sugar level] three months ago was 15.9% – that’s ridiculous!  That’s twice as high as she should be.  She’s not on insulin.  We sat and I talked with her about my concerns, that she was not taking her meds, and didn’t want to take insulin, though that was exactly what she needed.

She was resistant to it, so I wanted her to work on her lifestyle.  She told me a lot about her personal history. She uses a cane since she was injured earlier in life, so it’s hard for her to exercise. 

We compromised, so that she wouldn’t start insulin that day, but the medications she was prescribed, she would take them every day.  We agreed that if her condition improved, she wouldn’t have to consider insulin.  She was medication naïve; she had been prescribed a regimen she wasn’t taking at all.  She had four or five other meds, which she was only taking sporadically, not on a consistent basis.

She felt very empowered after we talked, and did some major life change.  She stopped eating a lot of processed foods, started taking her medications, eating whole foods, and logging her readings.  She said she’d try to go to a dance class.

Yesterday she came back after I’d been calling her for three months.  We did an a1C test here in the clinic, with a point of care test, and her level was down to 7.4, which is amazing!  It improved more than half in that three-month period.  She felt so empowered!  Now our goal is to maintain this level of control. 

   

Read another story about changing habits related to diabetes.

Thanks to Sandra Leal, PharmD, MPH, FAPhA, CDE of El Rio Community Health Center, a Federally Qualified Health Center in Arizona, for sharing her story.  Sandra is the Medical Director of Clinical Pharmacists.  “Maria” is a pseudonym. 

   

An adverse drug reaction from Seroquel: This was a revelation

A story from Kaitlin Bell Barnett's book, Dosed:  The Medication Generation Grows Up:

This excerpt is about one of the book's main subjects, a fourteen-year-old boy named Paul who has been a ward of the Florida foster care system since being taken from his parents at age five because of abuse and neglect. At the time of this scene Paul has been taking the atypical antipsychotic drug Seroquel for several years after being diagnosed with bipolar disorder. He has recently been sent to the hospital with dangerously high blood sugar resulting from untreated diabetes. At the hospital, he was diagnosed with diabetes and told he must inject himself with insulin multiple times a day to keep his disease in check.

     [Paul was] not particularly stoic about the pain. The first time he had to give himself a shot, he nearly passed out - it hurt.  He couldn't do this three times a day for the rest of his life.  From then on, whenever he had to prick himself to check his blood sugar or inject himself with insulin, he felt a wave of sadness and defeat come over him.  So far, he'd been very good at manipulating his circumstances to suit his purposes, but diabetes seemed one thing he couldn't wiggle out of.  His alleged behavioral problems were finally under control, and at the residential psychiatric center at least he'd been able to spit out the Seroquel.  But failure to inject himself, everyone told him, would put his life in danger.  

     At some point, Paul's psychiatrist explained that his diabetes probably resulted from taking Seroquel.  Paul wondered why doctors would prescribe him a drug that caused another illness, but he figured at first that they knew what they were doing.  As he got a little older, he also made a connection between the diabetes and the other side effects of Seroquel that he disliked so much - the dry mouth, the cravings, the woozy, dizzy feeling.  Once when he had either forgotten to take his Seroquel the night before or his foster parents had forgotten to give it to him, he awoke without a dry mouth, and it occurred to him that maybe he could avoid that feeling if he didn't take the pills.  So he went a week without taking them.  He felt better, and saw that his blood sugar readings were more level.  Then, the morning after he'd gone back to taking the drug, he awoke with a dry, fat-feeling tongue and abnormal blood sugar again.  Finally, he understood the connection - and realized that maybe the diabetes was reversible if he stopped taking his medication.  This was a revelation.  As he'd understood it, he'd have to deal with the condition for the rest of his life.

     By the time Paul figured this out, he have moved away from the group home and was living in a different therapeutic foster-care placement, one chosen for him because the father was a nurse and could monitor his condition.  Both parents watched like hawks while Paul took his insulin and his Seroquel, nagged him to go out and get some exercise to lose weight and control his blood sugar, and monitored his whereabouts and his grades.  Later, he would see the discipline they imposed as beneficial, but for the moment he chafed at being stuck adhering to two different medical treatments he intensely disliked, one of which - the Seroquel - seemed to be maddeningly and needlessly causing the other.

     In time, with his diabetes under control, Paul was transferred to a more relaxed foster home where, now aged sixteen or so, he was put in charge of his own medication.   He stopped taking Seroquel altogether, and noticed himself shedding weight.  Eventually, his blood sugar problems disappeared, and his doctor told him he no longer needed insulin.  He felt vindicated.

     Read a story of a similar adverse drug reaction to the anti-psychotic drug Zyprexa on this blog.  Thanks to Kaitlin for this excerpt from her book, Dosed:  The Medication Generation Grows Up, and to Bethany Sales of Newman Communications for connecting us.

Don't tell my wife: Stretching prescriptions

Martin Schwarzenberger, a 56-year-old accounting manager for the Boys and Girls Clubs of Greater Kansas City, s stretching out his prescriptions. Martin, who has Type 1 diabetes, is not cutting his insulin, but has started scrimping on a variety of other medications he takes, including Lipitor.

"Don't tell my wife, but if I have 30 days worth of pills, I'll usually try to stretch those out to 35 or 40 days," he said. “You're trying to keep a house over your head and use your money to pay all your bills."

Advice: Ask your doctor which of your prescriptions you can stretch with the least harm.

Read another story of access to care.

Thanks to Stephanie Saul for the source article in the Oct. 22 issue of the New York Times.

Mother was convinced psychiatric meds were poison: Adverse drug reaction of diabetes

"Shyla" was a shy patient who ate nothing but white foods, and assaulted anyone who entered her airspace on the hospital ward. She was mute, but not uncommunicative. Some of her problem was her psychosis. Most of it was her mother, who was appointed by a court to be Shyla’s legal guardian and to monitor her medications. But her mother was convinced that psychiatric medications were poison. So Shyla would go home on weekend passes and return with all her pill bottles untouched, and without a shred of sanity.

This continued for months. Her mother brought a notebook to each visit that listed the side effects. Shyla’s doctors thought her mother was sadistic; she thought the doctors were evil experimentalists.

The doctors successfully persuaded a judge to remove the mother as a guardian and appoint someone else.

The guardian ensured Shyla took her meds. At first, Shyla flourished; she smiled, spoke, became lucid, joined a day program, began overnights in a residential house and was discharged. She seemed happy.

Then she got diabetes and required insulin. By then, studies had consistently found a link among her condition, antipsychotic medications, and diabetes. In 20/20 hindsight, it was clear that she had had an adverse drug reaction to the antipsychotic drugs . Her mother had been right.

As her doctor, Elissa Ely, concluded, "We doctors were innocent but at fault. The ground beneath professional feet should grow firmer over time – one ought to feel more certain of what one knows. But the more I know, the more I am afraid."

Advice: Have a healthy fear of possible side-effects, and use only the least amount of drugs to be effective.

Read Dr. Elissa Ely’s article in the July 24 NY Times.

In Her Second Trimester: Medical device and overdose lawsuit

Sylvia Lane was 17 weeks pregnant. Diabetic, she lay in her bed in her Lynnwood, Washington apartment, comatose and alone, her blood and brain in desperate need of sugar. But the medical device she'd just received instead kept pumping insulin into her body, starving her brain. Her husband was on an aircraft carrier, halfway round the world. The small pump had a safety feature designed to stop the insulin flow in emergencies like this. But the feature had never been turned on. The pump had been shipped to her with the option turned off, and she hadn't known about the "auto-off" safety feature. She suffered severe and permanent brain damage. And her doctors determined that her growing fetus had suffered irreparable harm; she was not able to have the baby. Her family sued Medtronic Inc. — the parent company of the pump's manufacturer — claiming the pump was unsafe. Her family reached a settlement with Medtronic whose details have only now come to light. This riveting story is reported by Ken Armstrong and Justin Mayo.

Advice to patients: Before you use any pump, make sure you know what safeguards in the pump's design might prevent an overdose.

For another story of multiple errors caused by a machine, see The Machine Was the Perp.