Have a Story to Tell? Had a medical error?

This blog is about patient safety, medical malpractice, staying healthy, and preventing future errors. Help & empower someone else, Teach a lesson, Bear witness, Build our community - Email us or call 781-444-5525.

Frustrated with a health problem?

Need an ally in your health crisis? Call 781-444-5525, or learn more.

Thursday, May 31, 2012

Ratings of doctors: Five stars for Consumer Reports

When I choose a car, I do my homework carefully, as my family's lives will depend on the decision.  I'm easily able to find the ratings of thousands of consumers, on a dozen dimensions, via Consumer Reports' well-known five-star rating system.  

However, I've been unable to do my due diligence, and have been frustrated, in making a different high-stakes decision, that of helping my mother find a doctor in Atlanta.  Each of several rating organizations posts only a handful of consumers' ratings, if any, of a given physician.   

Maybe there's hope now, at least for consumers of medical services in Massachusetts.  In today's Boston Globe, Chelsea Conaboy described a new resource for patients in Massachusetts, courtesy of Consumer Reports and Massachusetts Health Quality Partners.  Beginning today, they're posting ratings of almost 500 physician practices that each had at least 50 patient surveys.  

MHQP has been posting physician ratings for several years.  Barbra Rabson, the head of MHQP, said the average physician practice has improved its ratings since 2009.  Such reporting is a powerful stimulus toward improvement.

Kudos to Consumer Reports!

And, can we fantasize that someday we'll have pricing information, too?

Tuesday, May 29, 2012

Peer support for living with diabetes: She was my second brain

Part 1 of Jo Treitman's story:
I was diagnosed eight years ago, at the age of 14, with Type 1 diabetes.  I had a pretty easy time settling into life as a Type 1 diabetic in high school, as my parents were very helpful, and I was very responsible.  But in leaving for college, it was a really difficult transition.  My health definitely took a turn for the worse.  I didn't have any serious complications but I was definitely headed in that direction if I kept it up.

One of my main issues was that I wasn't remembering that I was a diabetic. Back in high school, I lived in my parents' house, where my being diabetic was normal. When I was with new friends who didn’t diabetes or know much about it, I'd eat the way they did, and do what they did. This obviously took a toll on my health.

The summer after my sophomore year, I decided to work as a counselor at a summer camp for children with diabetes.  There, diabetes was normal for the first time in my life and it was a really good feeling.  I made some great friends there and my numbers were fantastic since we all were taking insulin at meals, and checking our blood sugars all the time.  It was three weeks of paradise!

Unfortunately, when I went back to school, I just didn't keep it up. A couple years later, in my senior year, I was at a table with friends and I met Natalie, who was also Type 1.  We hit it off immediately, and asked each other about the food we ate, exercise, etc.  We both wanted to gain better control of our diabetes, and we decided to do it together, so we  become “diabesties”.  

We instantly started texting each other to get “back on course”.  Every time we checked our blood sugar, we'd text each other the result.  It didn’t matter what the number was because the more times you check, the more data you have and diabetes is one big, difficult, ever-changing math problem. That reminder, from a Type 1 diabetic, was pure support. My relationship was different with her than it had been with my parents because I couldn't get frustrated with her for calling me out on anything since she was diabetic too!  She was the one I'd call when I needed a second opinion, which happened a lot, as there's a lot to pay attention to and a lot to tinker with.  She was my second brain. It was nice to have two brains coming together on this, because my mind would always be spinning with questions like:  If I bike really hard, will my blood sugar go high or low?  If I have fries with ketchup, do I need to take more insulin?  We'd text each other about those things in addition to our blood sugar levels.

A few days after meeting Natalie, we connected with a classmate of mine, Sam, who was also diabetic.  Sam immediately joined in and the three of us texted constantly.  We'd wake up to text messages, and would eat a lot of meals together. We even began to notice trends in each other, since diabetes is different in different people. Certain foods may work for some and not for others. Even certain exercises may cause one person to have a low blood sugar and another person’s levels to rise. 

When your blood sugars are low, you feel shaky and really out of it.  Sometimes if I was studying late, and Natalie was around, she would bring me a juice box at 2 am.  Those lows are really annoying, so that meant a lot.  Having someone by your side who knows how it can be was pretty awesome.  

The three of us went about texting each other, and realized we wanted every single person living with diabetes we knew to know about this because it was so unbelievable, and we felt so much healthier.  I was with Sam and Natalie, sitting in a room, when we made the Facebook group Diabesties and invited every single person living with diabetes that we knew.

Read a story about support for diabetes in the e-book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment, and see the Diabesties Facebook group.  Thanks to Jo for the interview. 

Thursday, May 24, 2012

Non-adherence to psychiatric medications: They are often curious

This excerpt is from a chapter in the book Dosed: The Medication Generation Grows Up that deals with teenagers’ “rebellions” against their psychiatric medications. People of all ages sometimes fail to take their meds in the manner their doctors have prescribed, but young people with psychiatric conditions are especially likely to experiment with what doctors call “non-adherence" to their prescriptions. Because drugs for psychiatric disorders change moods, behavior and even personality, and because young people are in such a state of flux, constantly growing, developing and changing, children and teens are often curious to see whether they still need their medications or what they would be like without them. Even a few months in an altered state can seem like an eternity when you’re young.

But quitting psychiatric medications rapidly and without a doctor’s supervision can have serious consequences, either in the form of withdrawal symptoms, relapses, or new symptoms cropping up. This young woman, Elizabeth, began taking Prozac and Ritalin at the beginning of ninth grade and let her prescription for Prozac run out a year later because she had trouble gauging whether the antidepressant was doing anything for her depression symptoms.

Although Elizabeth told her mother during the fall of tenth grade that she no longer wanted to take Prozac, she blanched at the prospect of confessing to her psychiatrist.  The regular fifteen-minute med-check appointments were agonizing enough.  though she had made more friends during ninth and tenth grade, becoming more socially adroit, once she entered a therapist or psychiatrist's office she'd just stare at the books and knickknacks and clam up completely.  She felt like she couldn't force words out of her mouth even if she'd wanted to.  Now embarrassed at having failed to follow the psychiatrist's prescription and unable to explain why, even to herself, she wanted to open up even less.  If this was  rebellion against anything  against her medication, against psychiatry, against her parents, against who-knows-what - it wasn't a rebellion she wanted to acknowledge, let alone be forced to discuss and defend.  The prospect of telling the psychiatrist was so daunting, in fact, that she threatened her mother with ditching the Ritalin, too, unless her mom found her a new doctor.  As usual, her mother capitulated.  When Liz saw the new doctor, she casually mentioned she'd previously taken Prozac, but that she was fine without it.

Liz wasn't necessarily rejecting antidepressants for good when she let them run out during the fall of tenth grade, but as time went on she simply didn't seek a refill, even as she bean to sink into a deep depression.  Around the same time, she befriended a circle of classmates who, even more than her pals at camp, thrived on interpersonal drama and embraced their identity as "fucked-up kids."  Several of them had taken to cutting themselves in secret, which, as Liz gleaned, helped put their emotional pain into something tangible.  In theory, she found the practice disturbing, but a few months after she went off Prozac, she took to cutting herself occasionally, too.  It turned out to be an effective way of calming herself.

So-called "cutting," otherwise variously referred to ask self-injury, self-harm, and self-mutilation, was by no means a new phenomenon in the 1990s, although it was undergoing increasing scrutiny:  Johnny Depp and Princess Diana had both admitted to self-injury, a psychotherapist published a young adult novel about the subject called The Luckiest Girl in the World, and the New York Times Magazine ran a lengthy article on the topic in 1997.  The article profiled a girl who had begun cutting herself, been treated with Prozac for depression and improved, but had gone off the medication after a few months and resumed the practice.

Liz didn't cut frequently, just when the tension built up to a point she couldn't bear.  She was careful to cut only when it was cold enough to wear long-sleeved shirts to cover the wounds.  But her despair during  this time, in tenth and eleventh grad, wasn't unrelenting  At times when she felt more cheerful, she couldn't remember quite how it felt to be depressed, but nevertheless felt a twinge, as though her past unhappiness were calling her back.  "I realized I still want to be depressed," sh wrote in a diary entry from her junior year.  "Like if you are, it proves you're a real person and if I' always happy, it means I don't really feel things.  Anyway I guess I romanticize depression.  Which is funny, because I don't enjoy it when I am. More like the idea of it."

Only in retrospect, many years later, did it occur to Elizabeth that quitting Prozac may have played a role in the urges she developed a couple of months later to begin cutting herself. But why had things come to such a pass?
There are certainly advantages to letting teenagers have a say in their care so that when they leave home, they are prepared to cope with any problems that emerge. Yet, Elizabeth felt that her mother hadn’t set enough boundaries or provided enough guidance, making Elizabeth responsible for her own refills and allowing her to stop seeing psychiatrists whenever she pleased.
Kaitlin Bell Barnett's Advice:  A more consistent and firm attitude from both her mother and her prescribing doctor, Elizabeth later concluded, would have helped stabilize her treatment and might even have prevented a relapse of her depression and the self-injurious behaviors that came with it.

Read a patient's drug compliance story 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.

Wednesday, May 23, 2012

A mesothelioma survivor on patient-centered care: For a reason

An interview with Heather von St. James:

Q: How would you define “patient-centered care?”
A. The nurses at Brigham and Women’s Hospital in Boston were really tuned in with my needs.  I really wanted orange Jello.  I couldn’t eat anything.  My nurse called her husband.  He went to four grocery stores, found some, and brought it to the hospital.  I ate that Jello like it was the best food I ever had!

Q. Is there anything the medical team could do to give you more peace of mind?
A.  A cancer diagnosis is just as much about the loved ones, the children, as it is about the patient themselves.  A lot of medical places miss that - it almost affects the family more.  The cancer patient has it together, but the family is falling apart.  Catering to the whole family is better, so the mesothelioma program concentrates on the whole family.

People [with mesothelioma, while at the hospital] are far away from home:  one-third are from outside the Northeast.  Every Wednesday, in a conference room on the 11th floor, there’s a caregiver and support meeting with two social workers and two clergy, and we talk.  The Brigham and Women’s staff fostered our talking to the whole family.  That’s through the international mesothelioma program.  

When this happens to a woman, suddenly her husband is in a caregiver role.  The others in the group were all wives.  They took my husband under their wing.  That set my mind at ease; I was worried about him, and that eased it.  Knowing there are people looking out for your spouse, or daughter, etc., is great, so you can concentrate on getting better.  

I was in Boston recently, for a checkup (cancer-free! Yay!).    I always speak at new patient orientations.  It’s a terrifying disease, because people are told, “You have six months to live, so get your affairs in order.”  But they see me and say, There’s hope. 

God put me on earth for a reason – for that hope.

Read the first part of Heather von St. James’ mesothelioma story, and see Heather's blog.  Thanks to Heather for the interview.

Monday, May 21, 2012

YourCity.MD: A good way to give back

Joe Benza’s story: 
I’m an entrepreneur, with several successful businesses over the years.  My book called "Preventing Aids" published in 1985 by JALSCO, Inc.  is in 40 countries.  I also bought and sold Internet domain names as a rewarding hobby.  I come from a medical family:  I have a brother who’s a surgeon, and we have dentists, dental hygienists and a urologist in the family as well. 
My father had Parkinson’s, and his hand would shake a little.  He was a proud man, so he wanted medication to stop that from happening as he was very self-conscious.  He ended up getting leukemia, which was one of the rare side effects of taking his partiular drug.  My whole family missed it; we didn’t look at the drugs he was taking to see if the risk outweighed the reward; none of us looked.  The drug was somewhat controversial, and my Dad told me two of his doctors argued about the use of the drug.  One of the doctors stated the other doctor was getting a kickback or had a financial interest of some kind in prescribing the drug! 
Experiencing side effects, he was misdiagnosed by his doctors for four months, and then he passed away.  We were really angry but took on most all of the blame ourselves...at least, I know I did.
About a year and a half later, a business opportunity developed.  I’d realized that the name www.YourCity.MD was available as a Web domain name with the "Local" city names as well.  The Gannett company encouraged me to build the websites to help people like my Dad and my family.  They were prepared to collaborate with me on making YourCity.MD into a business. They ultimately bowed out, but I kept with it.  In light of what had happened to my father, it seemed a good way to give back to everyone else so they can avoid our guilt by using our free resources to make the best decisions for their own families.  
Today, we’re helping people in 100% of the USA to find good local doctors and the best healthcare information available.  We are the only "local" platform on the Internet in any industry with a national footprint. 
Read another entrepreneur’s entrepreneurial patient safety story.  Thanks to Joe for the interview, and to Joelle Caputa of CPR Communications for connecting us. 

Friday, May 18, 2012

MRI injuries: Because children use it too frequently

Darla Stuart's story:
The U.S. Food and Drug Administration (FDA) reported in 2011 that MRI accidents in the US have risen over 500% from 2000 to 2009. The overwhelming majority of reported injuries fell into one of three categories: burns, projectiles and hearing damage.  However, these injuries are not accidents: they are directly related to the failure to assure proper safety standards.

 In 2008, our, then, fifteen year old daughter walked into a children's hospital to have an MRI.  More than a half-hour behind schedule the technician rushed her through the screening as it was late, the last appointment of the day.  Precautions like a two way audio system, safe and inspected equipment and a panic button, which were advertised on the hospital’s website, were non-existent.  Thirty minutes later our daughter crawled out of the MRI machine of her own accord: alone, traumatized and injured. 

The video goggles that were offered by the hospital to help her relax during the procedure were faulty.  They had been recently returned to service after being repaired by the hospital’s own Biomedical Department.  A plastic casing, part of the video goggle manufacturer’s original design, meant to cover the metallic webbing of the video goggles, had been removed and not replaced during the most recent repair.  So, at the moment the MRI started, a piece of tungsten metal from the video goggles, acting like a magnetized projectile,  soldered to our daughter’s eyelid and burned like an ember during three MRI cycles while she laid in there asking, begging, crying for help:  help that never came.  The attending technician had turned the patient microphone down because the noise of the MRI was disturbing to other radiology staff.   

The hospital knew within hours that: the goggles had been improperly repaired by their biomedical department; the microphone had been turned down too low by their staff to hear our daughter’s cries; and the panic button, meant to be an additional safety procedure, was not installed.  They knew that her injuries were not a result of an accident, but caused by their systemic failure to assure proper safety standards. Ironically, though, they blamed her for their negligence and treated her with cold indifference. 

Our daughter’s injury was much deeper than the multiple lacerations on her eyelid, her innocence was lost and her trust of others was shattered.  As the wounds on her eyelid healed and scarred, the wounds in her soul festered.  She found herself waiting for the next bad thing to happen, preparing herself for what she would do if she had to save herself, living in fear every day.  Ultimately, she felt like the fear she lived with every day was too much and she considered suicide.  She has received therapy to help overcome her post traumatic stress reaction, and will likely never be free of the heightened anxiety she experiences as a direct result of this life-changing incident.

On May 16, 2012, four plus years after our daughter’s injury, a jury in Adams County, Colorado found the hospital guilty of medical negligence.  That verdict not only publicly confirmed to our daughter that she was indeed a victim of their negligence, but it gave us the freedom to speak about that negligence as substantiated through a public record. At trial it was admitted into evidence via a staff member’s testimony that the panic button that was to have been mandatorily placed into service was often removed because children use it too frequently.  Further it was stated that the safety manual, which was allegedly written after our daughter’s incident to retrain staff on MRI safety, hadn’t been instituted and staff weren’t even aware that it existed.  

Our daughter’s injury could and should have been avoided.  Her injuries were not caused by an accident or a device malfunction; they were directly caused by the failure to assure and implement common and highly recommended safety standards. Safety standards that remain, as of today, inconsistently applied to children who use that hospital's MRI equipment.

Industry leaders agree that there should be safety standards that provide regulated oversight for MRI safety.  Colorado does not regulate or inspect MRI equipment or associated items used in MRI’s.  Additionally, Colorado doesn’t require that MRI technicians be licensed. Essentially, each facility that offers an MRI service is allowed to independently regulate how they oversee their equipment and determine staff credentials.  Tragically in our experience that independent oversight was absent.

Statistics indicate that with a 500% increase in reported accidents it is highly probable that another child will be a victim of this type of negligence. We can’t turn back time and change what happened to our daughter. 

Darla's Advice:  We can insist regulations are created and government oversight provided. We can warn parents to do what this hospital as of May 16 refused to do:  require staff perform an parent observed inspection of the MRI and associated equipment; assure that the two-way audio system is tested  with their child; make sure there is a panic button is working and tested.  We can speak publicly about our experience, and perhaps with the support of others we can make a stand and insist that no other child be a victim of this type of avoidable negligence.

Read another kind of MRI error story, and see Darla's blog.  Thanks to Darla for sharing her daughter's story.

Tuesday, May 15, 2012

A domino kidney transplant: Life imitating art imitating life

In a 2008 episode of ABC's TV show, Grey's Anatomy, Dr. George O'Malley is involved in a possible 6-way kidney donation, called a domino transplant.  That may have been based on a true story, as the first such transplant had been performed 20 years earlier.  Katelyn Rankin-Woeste saw that episode and filed it away in her  mind.

Three years later, she learned that Vincent, a five-year-old boy in her family's social circle, needed a kidney.  She told Vincent's mother that she was interested in being a donor, if she was found to be an appropriate match for him.   The mother gave Katelyn the phone number at Cincinnati Children's Hospital, not really expecting that Katelyn would really carry it through, as only two people outside the family had done so.  The hospital staff found Katelyn's kidney was indeed an appropriate match for Vincent.  

Katelyn searched in the website Cincinnati.MD [now larger, known as YourCity.MD], and found an excellent local surgeon.  She had used the same website to find an ObGyn doctor a few years before.  Her kidney donation surgery occurred this morning, May 15.  
Vincent's insurance will pay for the bulk of her medical expenses, but she has been paying substantial co-payments herself.  Donations to defray her costs can be sent to Charities MD Katies Fund, 209 S. West Street, Mason, Ohio 45040.

Advice:  Be like Katelyn, and pray that if you ever need a kidney, someone like her will be there for you.

Read about other acts of heroism in Chapter 11 of my book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment [e-book]. Thanks to Katelyn and Joe Benza for interviews, and to Joelle Caputa of CPR Communications for connecting us.

Sunday, May 13, 2012

After Mesothelioma: How My Village Helped Save My Life

Heather von St. James' story:

After the birth of my daughter Lily on August 4, 2005, I came to realize the meaning of the saying, “it takes a village.” Our village consisted of my parents, my in-laws and a multitude of friends. I had experienced a pretty easy pregnancy and after the birth everything was going well. Unfortunately, things were not going to stay that way.

A month after returning to work, I began feeling tired and out of breath. It would have been easy just to chalk it up to having a newborn, but I felt something was wrong. I went to my doctor who ran several tests on me before finding out the reason for my symptoms. It turns out I had malignant pleural mesothelioma, which is a cancer that affects the lining of the lung. Apparently it was caused by unknowing asbestos exposure as a child.

I was told that if I didn’t undergo any treatment I had about fifteen months left to live. My first worries were about Lily and how she and my husband would cope if I wasn’t around. These fears led me to choosing one of the most drastic mesothelioma treatment options available. On February 2, 2006, I had my left lung removed in a Boston hospital. It took 18 days of recovery in the hospital and then an additional two months recovery before my body was strong enough to begin chemotherapy, followed by radiation. Remember, through all of this I was still a first time mom with a new baby.

All of this would have been impossible if not for the village that supported us. It was interesting to see who was part of our village. People we thought we could count on disappeared and some we didn’t expect to help rose to the challenge.

During our stay in Boston, Lily stayed with my parents in South Dakota who went from being grandparents to being primary caregivers. Fortunately, they also had their own village supporting them. Girls that I babysat in my youth became babysitters for my girl while my parents went to work. Church members provided much needed love and support. Meanwhile in Boston, we met new friends who were going through the same experience were and we felt their love and support for us.

It was hard to be away from Lily as she was experiencing childhood firsts.  All I had was pictures my mom sent.  My husband printed grainy black and white copies of these milestones off a community hospital printer. Through all this, I keep the thought forefront in my mind that my daughter was the reason I was away from her and fighting for my life.

My message to everyone else is to embrace whatever challenges life gives you. Even with all I went through, I am thankful for what I experienced.  My favorite quote is, “Life is a banquet and most poor suckers are starving to death.” Embrace your life for all it is worth.

Thanks to Heather for sharing her story.  Read another story about a cancer survivor, and see Heather von St. James' blog.

Tuesday, May 8, 2012

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.