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Wednesday, August 31, 2016

Co-management of pain medication: He was a good partner

Dr. Maren Batalden’s story:
Several months ago, I treated a man in his 40s, a veteran of the war in Afghanistan who had developed both a chronic pain syndrome related to recurrent pancreatitis and a problematic relationship to opioids.  Sometimes the healthcare system had been suspicious of his requests for pain medication. People were nervous, thinking that if they listened to him, and gave him an inch, he’d take a mile, and we would get into a dynamic were we’d never be able to satisfy his needs for narcotics.

I have been thinking a lot about this “co-production” framework for patient care, which invites a more full partnership and more transparency in communication, so I decided to risk putting it all on the table.  “Look, we don’t want you to be in pain.  But it can be hard for us to know whether we are managing your pain or your addiction. You’ll have to help me out with this. You have a high tolerance to narcotics and you have real pain. Let’s figure this out together. What matters most to you?”  Having had a lot of experience in various hospitals, he knew he didn’t want to be on a pump that he could use to dose himself as he knew he might fall asleep and wake up with undermedicated pain; he didn’t want to have to keep ringing the bell to ask the nurse for pain medication that was prescribed as needed or “PRN.”  We put together a plan that involved a combination of long acting and short acting medicines on a regular schedule at doses that he knew would work for him.  

He turned out to be capable of being a very good partner.  The regimen we put together kept him comfortable without over-sedating him.  He did not page the overnight teams with requests for more narcotics. In keeping with parameters I set in our initial conversation, he made no demands for additional narcotics at the time of discharge. I suspect most people want to be good partners with their health professional teams, if we help them understand what we need and want from them and what constraints we are working with.

Often, hospital-based doctors wring their hands behind the scenes in caring for patients like this.  Assuming people with addictions to pain medication will ask for more than they need, doctors feel they have to make decisions by themselves and – not surprisingly – they often don’t get it quite right.  This leads to a lot of back and forth tension about a hospital pain regimen which is frustrating for everyone.

Once you get start looking for ways to improve the quality of the partnership between health professionals and patients, you see it everywhere.

Thanks to Dr. Maren Batalden for her story. Read another of her stories about the co-production of medical care and her article in the British Medical Journal.

Wednesday, August 17, 2016

Managing diabetes with BlueStar: No more metal can go in there

LuAnn Stottlemyer’s story:
In 1993, I’d gone to get new glasses and have my eyes examined.  The doctor asked me how long I’d had diabetes.  I don’t have it, I said.  He said, You should get a primary care doctor and get some blood work done.  

I did, and two weeks later I got a call at my office saying I had Type 2 diabetes.  We tried to manage it with Glucotrol and whatever drugs there were available then.  I wasn’t dedicated to checking my glucose like I should have been.  My mother and grandmother both had Type 2 diabetes.  You’d think it might skip you and go to the next person.

My A1c [a measure of the blood sugar level] got up to 10.3. That scared me!  I tried to watch it for a few months, thinking I could manage it on my own.  But I wasn’t really eating like I should, and wasn’t testing my glucose like I should.  

In 1997, I had two stents put in, and one in 2014.  In June 2015, I had an emergency when they realized my heart artery was 99% blocked, so they put in two more stents.  That’s all that can go in there, the doctor told me; no more metal can go in there.  He said next time, we’ll be shipping you to Baltimore for bypass surgery.  Now I have five stents in my left anterior [front] descending (LAD) heart artery, which they call the “widow maker.”   I have circulation problems, and I’ve had glaucoma and cataract surgery.

I had a log book to track my blood sugars and what I ate.  But then that book would lay there for days without me testing my glucose.  It wasn’t with me all the time; I didn’t take it to work, or to restaurants.  

In January 2016, I’d gotten my A1c down to 9.3.  They said they have something called BlueStar, and asked if I wanted to try it.  I said I’d give it a shot.  When I saw that app, a light bulb went off!  I still get emotional when I think about it.

I like that the app keeps me accountable.  I used to say I’d eat right, but it didn’t work.  

Now, when I get up in the morning, I have something that talks to me and says, “Eat your breakfast.”  It’s almost like a companion to me.  If I put in a number that’s low, 70 or so, that app will say, “It’s time to eat 15 grams of carbohydrates.”  It sets a 15-minute time on my phone to remind me to recheck by blood glucose.  I’m amazed that someone made a program that can track that, and even if I’m busy, to tell me to check my sugar.  That means a lot to me!  I wish I had this back in 1993 when I was first diagnosed with diabetes.

BlueStar has become part of my life.  It keeps me accountable.  I look at my grandkids and wonder if they’ll get to know me.  I’ve made up my mind that they will.  Through this app and God’s help, I’ve determined that I’ll live a lot longer.  

Instead of the log book, I just key the information into my phone.  People just think I’m texting or something.  

I’ve gone from not being able to go to the market for the last year and a half or two years, since I couldn’t walk, and my energy level was terrible.  Now I can.  I told my boss at work I was so excited that I could go to the market now!  She looked at me with tears in her eyes.  I didn’t realize it took that much of your life.  Now I can walk from my car into work, and on some days I can walk clear from the parking lot to my desk without even stopping!  I’m amazed at the difference in my life.  My grandkids are, too.  They’re seven and nine years old.  Now I can go bowling with them.  

Now I have a FitBit, too.  It can be synced to my BlueStar app, so I can track my steps.  I can also use BlueStar to watch videos of how people do different things to manage their diabetes.  

My primary care doctor asked me how other patients can get ahold of BlueStar, because she has seen my A1c come down.

Janice McLeod’s comment:

I’m the WellDoc Director of Clinical Innovation for BlueStar, which is an app that was cleared by the FDA [U.S. Food and Drug Administration] to provide personalized coaching and support 24x7 via people’s smartphones.  BlueStar allows patients to share their data with their healthcare team, so they can best partner together to improve diabetes care. We recently studied its use in a small study conducted in a patient-centered medical home for which BlueStar provided real-time coaching and guidance on a daily basis, with coaching about once a month from lay person health coaches. Preliminary results showed a 1.7-point reduction in A1C from baseline of 9.7%. That’s primarily from two factors:  having an engaged patient and regularly informing the healthcare team.  

Thanks to Juliette Bogus of PressComm Public Relations for arranging the interviews.  Read another diabetes coaching story.

Monday, August 1, 2016

Family education for coping with mental illness: We just had to do it ourselves

Joyce Burland's story:
     My sister became ill with schizophrenia in 1960, when she was 30, as a mother with 5 young children.  I was a college graduate, and knew my way around research.  But as hard as I tried, I could fathom nothing that was helpful for us.  At that time in America when people became ill with mental illness, the worst outcomes happened.  There was nobody there to counsel or confirm or console, nothing!  It was at the height of the family blaming era.  So the idea that families could teach other families was unheard of.
     My sister escaped having her brain skewered with a needle [for a lobotomy], but she went into Freudian therapy, which alienated her from her family almost immediately, as she was very psychotic.   I just watched the whole thing go down the drain, which was tragic!  She rejected her husband  since she had delusions about him.  The kids huddled, and my mother took over as grandmother.  Things were full of tension because of the animosity on my sister’s part.  

     For years and years she was out of touch with all of us in the family, and the kids had to struggle all by themselves.  When Mommy got to be 80, I called the five of them to ask them to come to her birthday, and three of them showed up.  I took them out to lunch.  I was frightened to approach the subject of their Mom’s illness after so many years apart, but I pressed on, asking them,  Do you all know your mother has schizophrenia?  With some relief, they said they knew something was wrong, but no one had ever given them any information or guidance. How could this silence happen in America, where in other medical realms so much progress was being made?

     Then in 1981,my daughter became ill.  There was still no guidance, no compassion, no counsel.  I had to stay up all night with her in the hospital, and at 4 a.m. was obliged to do a psycho-social interview with a resident.  He said she now had schizophrenia because her “infant psychosis” was breaking through.  I looked at him like he’d come from Mars, recognizing instinctively that this was just plain crazy.  It was from my neglect of her, early in her life, he added!  I don’t know when outrage matures and inspires action, but that was one key event that later drove me to write Family-to-Family.

     At that point,  I’d never heard of NAMI [National Alliance for Mental Illness], but I did get a suggestion from a friend and called Dr. [E. Fuller] Torrey, who’d written Surviving Schizophrenia.  He’s a radical activist and wonderful psychiatrist.  When his sister got schizophrenia, he realized how abandoned families were, and how badly the mental health system treated people with mental illness.  He advised, if you make a call to someone and they can’t help you, insist they give you the next lead.  I spent two years on the phone trying to find resources to save my daughter’s life.  She didn’t have any insight into her illness and I did not get a shred of useful professional guidance beyond Dr. Torrey’s kindness. It was just hideous!  

     I began to understand how many people had gone through the same nightmare.  How can this be America?!  There was no professional initiative, no one saying, Oh gosh, we have to educate families because they’re the first responders.  Family caregivers were so forgotten and unheralded and sacrificed.  I’d gotten my PhD in Psychology at age 51 or 52, but psychology had all the wrong answers. 

     I said, This is unacceptable.  If the providers in the field won’t do this, we will have to do it ourselves. I felt like I had a tailwind from my justifiable rage at what we’d gone through as a family, and concern for all the other similar stories I’d heard. And I had absolute faith that family caregivers would be superb teachers.  One psychiatrist complained at a meeting that we were taking over the store.  I said, How can that be when there was no one in the store!  

     In 1991, NAMI-Vermont got a grant for $15,000 from NIMH for family education, but I’d started writing the course even before that.  I trained the first teachers in Vermont, and kept writing later segments of the 12-week course while they were teaching it.  Talk about inspiration and energy behind an idea!  It was so all-consuming, that my husband had to say, I don’t want you to cross the street until you finish the course!
     Now, 25 years later, we have hundreds of volunteer family member teachers across the country.  Every teacher has some degree of the same story of isolation, being ignored and disrespected at some point, though in all other illnesses, people are kind and concerned.  It was SO different for people with mental illness.  By then, I’d seen 20 years of the burden on my own family, the weight of continual stress on my mother and father, the impact on their finances and their dreams of a happy family future.
So this is the story of many Americans who refused to accept the rejection and discrimination they faced from the psychiatric community, who found the courage and resolve to turn the prevailing myth of family dysfunction on its head and forge a lasting opportunity for family caregivers to learn how to manage effectively and regain balance in their lives.     

     Moreover, we didn’t stop with Family-to-Family.  NAMI now has the Provider Education Course which I wrote in 1996 , where a team of family members and individuals with mental illness go into mental health agencies and talk to providers about the realities of mental illness.  I also wrote a  program to help teachers recognize early onset mental illness in children.  In fact, NAMI now has ten free peer education and support programs, all directed by family members and people with the lived experience of mental illness.

     Helping families in crisis, giving them something to use while they’re going through the demanding and mystifying elements of mental breakdown, is priceless.  We help them see their stricken loved one as a hero rather than as a lost cause.  Family members who take the course say it gives them more understanding and compassion and concern, and an awareness of the heroism it takes to live with these illnesses.  All that improves the relationships in the family.

     This program also ends up being enormously healing for the teachers, using the pain they have lived through to be helpful for other people.  That’s the last stage of coming through trauma:  giving it meaning and significance.    We’ve never lacked for teachers.  Everywhere I went there were 20 people saying, I want to teach this.  It has made for me a wonderful kind of missionary life.  

     I just had to light a candle and go forward, since it was all blackness!  The families responded.  You have to give a huge vote of appreciation to the families that keep this going.  That’s the miracle here, that people said, I’ll pick this up and do it.  I don’t know how many organizations like NAMI there are, for which people would go through the demanding training for teachers, give up 12 weeknights to teach the course, and turn in their evaluations.  NAMI members are so dedicated, so ready to help others facing the trauma of mental illness.
Ken’s Advice: NAMI’s Family to Family Education Program  has helped more than 300,000 family members, for free.  Recommend it strongly to your friends who have a mentally ill family member.

Read a story about a very different patient education class.