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?

Read the chapter on choosing a doctor in Getting Your Best Health Care:  Real-World Stories for Patient Empowerment.

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. 

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.

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 11^th 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.

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. 

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.

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.

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.

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.

Face Forward: Still, I had to persist

Michele Howe Clarke’s story:
My journey was one from living in a wonderful myth of perfection, as an investment banker, mother of a six-year-old girl, with a husband, living the high life. Then it was shattered like Humpty Dumpty, by an aggressive head and neck cancer. It was a total surprise. I had this pain behind my ear, and went to the dentist. He couldn’t see it, and thought there was nothing there, so he just told me, “Some people just live with pain.”

I got pregnant, and had my daughter. Then the pain became intense. I persisted in saying, “Something’s up here.” Finally, my dentist said to see a head and neck specialist, and I did. Still, I had to persist with him too, telling him something was there, though he couldn’t see or feel anything: “No, really! There’s something going on.”

I had a needle biopsy, and was told to have a happy Christmas, as there was no way I had cancer. It was a series of unfortunate events, as it was such an unusual cancer, not in the forefront of people’s minds: adenoid cystic carcinoma of my salivary gland, so the pain was reflecting in my dental area.

I went in for an operation, and they found it was a cancerous malignancy growing into the facial nerve. I had to sacrific all the facial nerves on my right side just for a chance to live. The statistics said I wouldn’t have very long.

The surgeon came in and laid a hand on my calf with family there, and said, “I’d understand if you’d choose death instead of disfigurement.” I felt an innate resource surge in me, as I wanted to dance more with this life.

I knew I’d get on the team of playing to live. Here’s an important lesson: My surgeon told me to choose death. Then when I went into his office after the operation, with a shunt, staples, and sutures in me, I had questions. But he didn’t have time for questions; it was very adversarial. Then he handed me a scrip for a whole vat of oxycontin pills, more than 300 of them. It’s like he was saying, “This is gonna suck, so go get numb.”

This was very unusual for me, but I owned my authentic No. I said he is NOT the doctor for me. I changed course in the middle of the head and neck diagnosis. I want to shout out to everyone going through a serious disease: It’s so important that you speak up if it doesn’t feel right. You are the key person in the medical team, A1, so ask what you need. If you don’t, no one can help you. If it doesn’t feel right, ask for alternatives.

For two weeks, I asked anyone I knew for a good head and neck surgeon in New York. I landed with Dr. Peter Costantino, because his team welcomes you in as if you are a person with a future, with life for you yet. He told me, “Honey, I want to get you to your daughter’s wedding.” [Sage was six years old.] I was spoken to in the language of hope, which we all deserve. These are the things we’re allowed to ask for. You can change course if you know there’s a better way for you. For you. There are other alternatives in the medical system, since for every doctor you have, there are 100 more.

My daughter is eight and a half now.

Then I had a baby boy, almost two years old now. I trusted my body, and had a wonderful healthy son! It’s OK to make decisions for yourself.

Early on in my cancer I was told something really important about the statistics: You are not an average, not a statistic; you’re an individual with a 0% or 100% chance. You’re on the field alone, with no one to compare yourself to. There’s no way to measure an average as an individual. The average isn’t true; what’s true is what you say about you.

You can live until you die no matter what you’re facing, or you can just live until you die.

See Michele Howe Clarke's book, Face Forward: Meeting Challenges Head on in Times of Trouble.  Thanks to Linda Smith of the Ascot Media Group for arranging the interview. 

For my birthday: Just what the doctor ordered

Today is my birthday, and I'm moving into a new demographic: 55 - 64. So my birthday wishes are for something big. Not a Lamborghini; not supermodel Amazon Eve, but not a nice necktie, either.

Nope; rather: Just what the doctor ordered. That's what I want. I greatly respect doctors' judgment, so I want us to be able to know clearly what their orders are, via prompt printed doctor's orders after ambulatory visits. That was the subject of my five-minute radio segment on WBUR's Radio Boston yesterday; you can hear it here. It was also the subject of my blog post yesterday on WBUR's CommonHealth blog.

Wish #1: Sign the petition to Federal rulemakers, since they've asked for comments now.
Wish #2: Spread the petition widely to your friends.
Wish #3: If you don't agree with the idea, but feel compelled to give me a gift, make a donation to the Michael J. Fox Foundation for Parkinson's Research in honor of my father, the late great Paul Farbstein.

See another blog post on why we should get health care information as good as our dogs get.

The window for public comments to the Office of the National Coordinator for Health Information Technology (ONC HIT) about Stage 2, and implicitly, Stage 3, of the definitions of "meaningful use" of electronic health records by doctors who are "eligible providers" for Federal incentive payments is open until May 7.

Critical Lessons Learned: Metastatic Breast Cancer Misdiagnosed for Nearly 3 Years

Karen Holliman's story

This is my story and Duke’s story. It’s a cautionary story of my efforts over several years to identify the source of increasing back pain and extreme fatigue and to find appropriate treatment for its relief. As Duke doctors were my care providers at that time, it’s also Duke’s story of medical judgment, decisions and institutional processes.

This story includes necessary background information, critical lessons learned after meetings with my key care-providers and other noteworthy information.

BACKGROUND:
Since working at Duke for about 14 years, I selected its HMO insurance. I had issues with fatigue and back pain throughout 2007. In 2/2008, I went for a “same day” visit to a Primary Care Physician (PCP). This PCP ordered a MRI. My MRI showed concerns for metastatic disease in several areas of my back. A bone scan was ordered in 3/2008 which did not correlate with my MRI.

Tragically, I was NOT diagnosed with cancer in early 2008. My PCP reviewed the 2 radiology reports and believed the MRI concerns for metastatic disease were ruled out by the bone scan results. Radiology did not provide any further information to my doctor. My doctor didn’t contact Radiology and Radiology didn’t contact my doctor after the bone scan. My PCP told me I did not have cancer. I believed I did not have cancer.

I had over 50 doctor visits over the course of three years as my pain increased. I believe people who know me will agree that I am persistent; intelligent; and quick to try to resolve problems. These characteristics were utilized in the process of trying to get to the root cause of my issues. I should have had a family member or friend serving as my patient advocate. At my request my sister began going to appointments with me in 2010.

I was diagnosed with fibromyalgia which never felt right to me. This was added to my Electronic Health Record (EHR).

As early as 8/2009, my Therapist’s notes say, “She feels angry and frustrated that she is doomed to feel the pain and fatigue until someone can tell her differently.” By 2010, I was often unable to walk without assistance or rest due to agonizing and unrelenting muscle spasms. My Psychiatrist’s notes on 6/2010 say “For about a week she has had incapacitating back spasms”; “feeling very low”; and said she “didn’t want to live like this.”

I went to the Emergency Department (ED) twice in October of 2010. The first visit was appalling and I’ll explain later. On the second visit my Pain doctor called ahead ordering an emergency MRI. It was denied at the time but scheduled days later.

I received the phone call from my Pain doctor on 11/3/2010. He indicated that my MRI revealed the diagnosis: widespread cancer. Specifically, cancer was seen throughout virtually my entire spine, sacrum and pelvis, and I had a compression fracture. This news was terrifying and I became outraged as I realized my 2/2008 MRI concerns were accurate and I had gone without treatment for nearly 3 years allowing the cancer to envelop my spine. Previously, I had heard and felt that some people thought this illness was “all in my head.” I felt a strange sense of relief because my illness finally had a name. I did not expect that I would feel better with treatment but I feel much better today.

On 11/24/10 I received a procedure called Kyphoplasty to fix two compression fractures in my back. I walked out of the hospital hours later with astonishing pain relief.

Soon after this procedure the root cause of my symptoms was found. I have: Stage IV Metastatic Breast Cancer (ER+ PR+). My prognosis was estimated at three years to live depending on response to treatment. My Oncologist at that time told me to stop taking my Hormone Replacement Therapy (HRT) which I had started in 2008 and said “that is half of your treatment.” I became incensed because not only was the diagnosis missed in early 2008 but I was feeding the cancer the hormones it wanted to thrive. Also, the realization that I would not be around to care for the children of my nieces was devastating.

I received two weeks of radiation which provided more pain relief.

I’ve spent precious time struggling to understand how my diagnosis was missed. I’ve struggled with the knowledge that the delay in diagnosis resulted in a delay in treatment, which could have alleviated so many years of intense suffering, and potentially added many more years to my life (especially had I known to stop taking HRT).

I first contacted a Legal representative who said my case was a series of unfortunate events and no settlement would be offered. Legal did get expert witnesses to review my case. I was told these experts supported the doctors and were complimentary of my PCPs care.

Later, because of my anger and plans to protest, a high level doctor put me in touch with Legal again to meet with my doctors to discuss what happened. I believe he wanted to know where the system had failed and he wanted it fixed.

The Legal representative arranged meetings with key doctors around 1/2012. My family attended. I worked diligently with Patient Advocate Ken Farbstein to prepare for these meetings. My PCP and Orthopedic doctors admitted mistakes / missing the diagnosis and deeply regretted their errors. These doctors came up with ideas for improvements. These meetings were healing for me and I believe were healing for the doctors as well.

The one exception was the meeting with Radiologists. The Radiologist who read my MRI didn’t answer key questions, often shrugged her shoulders and giggled throughout the meeting. My family and I were incredibly offended. Because of this Radiologist’s behavior, we scheduled a meeting with the head of Radiology who was extremely thoughtful and we discussed opportunities for improvement.

LESSONS LEARNED:

Primary Care Physician (PCP) Meeting:
In meeting with my PCP, he said “I’m not a radiologist; ... It’s hard for us to say which test is the best test.” Yet, he didn’t talk with either Radiologist after my MRI and Bone Scan in 3/2008 and vice versa. Without better communication and teamwork between Radiology and generalists, this could happen to other people.

I yearn to go back and effectively question my doctor about the MRI and Bone Scan in early 2008. Some lessons I can share are:

- If you have any Radiology report which indicates possible metastatic disease or something equally alarming, make sure you get a definitive diagnosis even if you have inconsistent findings in another report. Rule out the worst case scenarios. Ask your doctor to speak with the Radiologist(s). Communication is so critical at this stage.

- I saw my PCP or went to Urgent Care averaging almost monthly for nearly 2 years. If you are not getting answers and are being referred to many specialists without any further answers ask the PCP to go back to the beginning of your record and review it with colleagues. In my case, the answers were already there.

- I sensed quite early on that I wasn’t going to get a definitive diagnosis from my PCP and I should have made a change. If necessary, go to a new doctor. Consider seeing a private PCP who is not affiliated with a large hospital. I am now seeing a private practice PCP who seems more empowered and seems to take more ownership in the care he is providing.

Orthopedic Meeting:
I was sent to an Orthopedic doctor in 3/2009 who could have detected the metastatic disease that was missed in 2008. My pain level was not assessed. I felt this doctor was rushed and insensitive and as a result, I filed a patient advocate report. At the time I asked them to hold my report until I reviewed the doctor’s report. I was concerned, given her interaction with me, that she would say something was wrong with my head, which she had verbalized to me during my appointment. I forgot to call back and ask that the report be released.

- Tell the doctor how you feel or make use of patient advocate resources. I regret not standing up to the doctor and not having filed the report right away. If I had filed it, my cancer may have been diagnosed earlier.
In our subsequent meeting, my Orthopedic doctor expressed deep regret and apologized that she didn’t take a “fresh look” at my case as she trusted what my other care-providers had reported. She said she had relied on my previous doctors who had made mistakes and said she too made the same mistake. She said what I had needed was a bone biopsy.

- Ask specialists to take a fresh look at your case and make sure they spend an adequate amount of time with you.

Emergency Department (ED):
In addition to the failure to diagnose my cancer for nearly 3 years, I had two visits with the ED. The first visit was appalling. I was never examined and was given two injections of Dilaudid and sent home on a Friday night still having spasms.

- I should have demanded to see another doctor and should not have left the ED without further help. The ED doctors asked me to leave twice and it didn’t feel like I had an option.

When I arrived and was being moved to my ED room, my brother witnessed personnel peaking around corners and doors laughing and heard one person mocking my moaning sounds. My brother was upset and confronted them. He said “Do you think this is funny? My sister is in excruciating pain.”

- We wish now that he would have taken names. We notified the head of the ED later.

The ED doctor didn’t update my Electronic Health Record (EHR) with the information I provided. The EHR read “No back tenderness.” “No acute distress.” I was given verbal instructions to use my bedroom for sleep and relations only. Because of the report, any payment was initially denied by my HMO. The visit was deemed “unnecessary.”

- An EHR is important but it can be a huge risk for patients if your doctor does not listen to you or use and update the EHR correctly. I believe had I gone to an out-of-network ED, for example, I would have been treated differently since they would not have had access to my Duke EHR. If you are not getting the care you think you need, ask the doctor questions. Ask about the basis for his/her decision(s). If it’s based solely on your EHR, then ask them to listen to you.

In meeting later with the Head of the ED, we felt that the ED was dedicated to addressing the issues.

Change in Insurance:
In October of 2010, I went on disability and changed my HMO insurance to a slightly more expensive option so that I could go outside of the HMO network to get some answers.

- If you are part of an HMO and having issues that are not getting resolved, consider changing your healthcare insurance so you can choose a different doctor.

Other:
Doctors are well meaning but fallible. It’s tragic that my doctors made a succession of critical mistakes.

- If you have a bad outcome, please speak with the institution’s legal representative to arrange meetings with your doctor(s). I learned a lot in my meetings. Doctors can make changes.

DOCUMENT PROVIDED TO DUKE:

The mistakes made in my case were all preventable.

I believe this failure sheds light on a lack of basic communication and collaboration between care-providers at an institution that promotes patient safety and teamwork as part of its core values.

My family, friends and I spent several weeks writing a report. I submitted the 15-page document in 2/2012 to Legal that outlined my experience, included notes from meetings, and made recommendations for possible changes that could improve the quality of care provided and improve patient outcomes. Recommendations for change were offered in a spirit of compassion and concern for other patients.

I received a thank you note from Legal representative but haven’t heard any further news. The Legal representative didn’t provide me with any further information about how the document would be used or address compensation initially requested for pain and suffering and possible loss of years of my life.

Unless actions are taken, this could happen to others. It is my sincere hope that my efforts to secure such changes will make a difference for others.

MY LIFE TODAY:
With treatment, I am feeling better than I’ve felt in many years. I am always conscious of how precious life is and I believe that those around me have become more aware of that too. I am striving to live my life with more love, patience, compassion and understanding. I have a positive attitude most of the time. At night, my mind often wanders to how my life will end and that scares me. My cancer could spread to vital organs but my biggest fear is total paralysis given the damage to my back before my diagnosis. I am single and often worry about the cost of the in-home care that I will almost certainly need. I am not in much pain now but take pain medication daily and require a great deal of rest.

I will spend the precious time I have left working to educate as many readers as possible about the lessons I have learned. I will create more joyful memories with my family and friends. I plan on vacationing this summer at a beautiful villa in Tuscany with visits from those I love. Here is a photo of the villa just south of Florence.

I hope that my story touches other people’s lives. If so, my sharing this story will have been very worthwhile.

Let’s get healthcare as good as our dogs get

My dog Jackson was born to a stray mother, and he never knew Daddy. Jackson has never had health insurance. Now entering old age (at ten), he definitely has some risk factors for poor health: uninsured, born homeless into a single parent family, aging. Yet he gets excellent health care, and of special note, he routinely gets much clearer doctors’ orders than I do.

At the end of each well-dog checkup, and at every other visit to the veterinarian, he receives a printed four-page summary that describes notes from the exam and, highlighted in red ink, the steps we should take to keep him healthy.

We weren’t brushing his teeth, so the visit summary included a paragraph on the plaque and tartar that develops with poor dental hygiene. It even recommended the specific flavor of toothpaste he’d likely prefer: poultry! Years ago, when we found a lump in his left front shoulder, the visit summary described what a lipoma was, with our treatment options. In a later visit we heard a shocking diagnosis of a cancerous tumor. In later rereading the visit summary, we absorbed more of it than when we had first gotten the diagnosis.

Sign a petition encouraging doctors' assistants to promptly print the doctor's orders for human ambulatory patients.

The vet’s electronic health record software makes it easy for the vet and the technician to produce these summaries, so promptly that the payment clerk can routinely hand the printout to us at the end of the visit. The information in the visit summary is significant, actionable, pertinent, timely and specific; in short, it’s highly meaningful.

For example, when Jackson recently ruptured a spinal disk, the visit summary specified the timing, contra-indications, and pill-sweetening Pill Pockets (again in that yummy chicken flavor) for a pain medication and an anti-inflammatory (think canine ibuprofen), and the rules for a month of doggie bed rest: no running, jumping, stair-climbing; minimal walks; a harness to replace the collar, etc. The visit summary enabled us to engage actively in his recovery.

In spreading the use of electronic health records for humans, the powers that be are deciding what constitutes “meaningful use” by doctors of the E.H.R. They’re gathering comments from the public until May 7, 2012. We humans are just as deserving as our dogs; we too, should get doctors’ orders as clear as our dogs get.

Please sign the petition so that the Stage 2 and Stage 3 definitions of “meaningful use” shall routinely and promptly include printed doctor’s orders after an ambulatory visit, to build patients’ engagement in their care.

That’ll give us meaningful use of the electronic medical record, in the consumer’s eyes – at a cost less than a dog biscuit.

See an earlier story about Jackson in my e-book.

Shared Decision Making and Mike Wallace

Mike Wallace, the well-known veteran journalist of CBS' 60 Minutes, passed away on Saturday.

Working in journalism for more than 60 years, he died at age 93. He had lived for many years with heart problems. He had had a pacemaker installed more than 20 years ago, and had had triple bypass surgery in early 2008.

Experts are becoming more skeptical about many forms of surgery and screenings, particularly heart surgery. The National Priorities Partnership, for example, has identified coronary artery bypass grafts (CABGs) and percutaneous transluminal coronary angioplasty (PTCA), among others, as often unwarranted, and has recommended that healthcare organizations concentrate on reducing them. Yet Wallace was able to live to a ripe old age with the benefit of several heart operations. It's very complex to ascertain whether an operation is right for a certain person. That's why shared decision-making, perhaps with a patient advocate, is so important.

Shared decision-making will be the subject of a forum in Waltham, Massachusetts on April 10, organized by the Massachusetts Health Data Consortium. Dr. Henriette Coetzer and David Veroff of Health Dialog will make presentations for the session, entitled "For Good Measure: Identifying Opportunities and Outcomes for Patient Decision Quality."

For considerations in the surgery decision, see Chapter 3 of my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Global payment and fee for service: They've been to the mountaintop

As a 13-year-old Jewish boy in April 1970, I read aloud and lectured to the congregation on the biblical rules telling the priests, who served as doctors, how to diagnose leprosy and other skin problems, in Chapter 13 of Leviticus. In ancient times, the Levites served as teachers, doctors, and medical assistants. They'd been chosen for those roles because of the good judgment, loyalty, and mettle they'd shown in times of hardship.

Nowadays, our best teachers and healthcare professionals are often secular. Paul Levy, for one, may or not genuinely be a Levite. And he certainly doesn't spout much dogma. He has certainly been tested; the job of a hospital president may be the most complex job. And Beth Israel Deaconess Medical Center, where he played a starring role, is an excellent place for a patient visit or inpatient stay - but it's tough on its presidents.

Paul will speak on Thursday, April 12 in Boston about his politically incorrect views on global payment. Some of his earlier thoughts on global payment have clashed with current dogma. The talk will be part of a conference on payment reform, organized by the Massachusetts Health Data Consortium. Joining Paul will be the deliciously tart Dolores Mitchell (on a later panel on cost control), fellow contrarian and CEO Charlie Baker, and other insightful speakers who've been to the mountaintop, so it should be very thought-provoking.

Meaningful Use of Electronic Health Records by Doctors

In the past few weeks, my mother, mother-in-law, son, and daughter have had doctors' visits in which the doctor gave them a number of instructions. In each case, they would have benefited from a printed list of doctors' orders, which should be well within the capabilities of their doctors' systems. They won't go to the Internet to see their medical records, because of the seniors' limited use of the internet, or adolescent disinterest.

Yet our dog's veterinarians print out their orders routinely and immediately, which can be very helpful.

Let's insist on getting medical care as good as our dogs get! Stay tuned to this page for instructions on how to give your input to the Federal rule-makers who are now in Stage 2 of defining the minimum requirements for a doctor's "meaningful use" of an electronic health record. Your input will be helpful now, and in setting the agenda early on for Stage 3.

Our comments will pertain to Sections 170.314(e)(1) and 170.314(e)(2) of RIN 0991-AB82 of the proposed rule, as noted at 77 FR 13838-41 and 77 FR 18856-57.

You can see the entire specifications by the Office of the National Coordinator for Health Information Technology for meaningful use.

The Opposite of Rocky: Hospitals' Use of Social Media

As a grown man, this hurts to admit, but I cry at movies. Some of them. A little. Like when the very battered and bloodied underdog, Sylvester Stallone, having gone all out to become a contender but of course, having lost nobly, cries out for his loyal girlfriend Adrian! to comfort him in the ring. And she, overcoming shyness and any prissiness at getting her nice coat soaked with blood and other bodily fluids, struggles up to comfort him there.

Now, even at that moment, while tearing up, I also feel some self-disgust, for I know Sylvester has been toying with me, peppering me throughout the movie with left jabs (she's homely but he loves her anyway!) and rights (they took away the big lunk's locker!) to set me up for the emotional knockout. And then I fall for it.

That scene came to mind after my recent research for a white paper on hospitals' use of social media. I came across one of the Facebook pages of Children's Hospital of Boston. The page shows at least 69 comments by family members, thanking Children's Hospital for caring for their children. It was my job to read all of them, moving me to tears more than once. These children overcame dreaded diseases, through their grit, and the skill and compassion of their doctors and nurses. Most of them had improbable Hollywood endings. May the others rest in peace, in loving memory.

That page has been liked by 700,000 people. The hospital's leaders recognize the importance of creating a favorable public impression among the parents of sick children. If the hospital's reputation is spread far and wide, the staff will be able to treat and save the lives of even more children. That's good for business, too. They've topped the page with the US News & World Report's headline that Children's ranked #1 in more specialties than any other hospital. That's fine; if you were in their place, you'd do the same thing. They've also used some tricks of the trade that Sylvester might admire. For example, to even get to some of the pages, you have to Like them first. That boosts the number of Likes, the coin of the realm.

Yet I admire Children's, and Sylvester. What's not to Like?

To read the free, three-page white paper with examples of hospitals' use of social media to improve patient safety, go to Swisslog's Facebook page.

Thanks to Swisslog for sponsoring the research.

25th anniversary of ACT UP: A tribe in desperate trouble

This month marks 25 years since the the start-up in 1987 of ACT Up (AIDS Coalition to Unleash Power), the coalition of gay activists that transformed health care for AIDS. The changes they won in funding to fight AIDS, in the ways medical research is performed, etc., marked an historic event in consumerism: the first major victory won by the grassroots efforts of citizens at risk of a particular disease.

My gay college friend Don may be alive because the gay community acted up since then to safeguard themselves, and to speed the development of anti-retroviral drugs that kept many of his friends healthy.

I hope we in the patient advocate community can one day be equally successful in promoting safer care. As Frank Bruni wrote in the NY Times on March 17: "a tribe in desperate trouble...elected self-reliance over self-pity, tapping its own reserves of intellect, ingenuity and grit to make sure its members were cared for."

Choice of a healthcare proxy: By the flip of a coin

A close friend recently described the anguish he felt during his father's final days. His father had appointed both my friend and his older brother as co-proxies, not wanting to show favoritism. Unfortunately, the two sons couldn't agree on hospice care for their father. In the face of their disagreement, hospital staff assumed that by default, they should continue aggressive efforts to save the patient's life, and did so.

Advice to seniors: Choose one of your adult children to act as your proxy in case you are not able to inform hospital staff about your decision for care near the end of life. If you have two children, you can flip a coin, and notify the preferred proxy that s/he won a coin toss. (You may have to flip the coin more than once.) Tell the preferred proxy you'd expect him to consult the other family members prior to making a decision using the living will as a guide (unless the decision needs to be made quickly). That way, they'd gain the benefit of others' thinking, but will still speak with one voice to all the health care providers, to give them clarity about what they should do.

This should prevent any resentment from the child you have not chosen as the proxy.

See a story about a simple living will.

A breast cancer survivor's interview: To wring their perfectly coiffed head

Question by Karen Weintraub: You talk about getting a lot of strength from other people going through treatment, people you met in hospital waiting rooms and elsewhere.

Answer by Kelley Tuthill: For me, that was a constant theme of being sick. There was always somebody who was dealing with something far more challenging than I was facing. You say, if they can face this, I certainly can do this.

Q. Was it challenging to be so public about your disease?

A. It was an incredibly positive experience to go out in Boston and have people say - even today - "how are you doing?" The flip side is some pain that the public feels, they share with me, and that's difficult, too. By going public, I've had opportunities to try to do something about [my frustration with the lack of a cure]. My coping mechanism is to try to help.

Q. Do you have any advice for people whose friends or loved ones are going through treatment now - things they shouldn't say to cancer patients?

A. That "you have the perfect head for being bald." If one more person told me that, I was going to wring their perfectly coiffed head! People mean well, but you go: Really? Really? I don't think so.

Q. People with life-threatening diseases often talk about how the challenge made them stronger. Was that your experience?

A. My life is better than it was five years ago, hands down. I appreciate life more. I have so many amazing people in my life now - and that's because of breast cancer.

Read another story about a breast cancer survivor. Thanks to Karen Weintraub for her interview of Kelley Tuthill, excerpted here from the G Section of today's Boston Globe.

The Patient Advocate's Bookshelf

During 2011, these books were mentioned on the blog, in addition to mine, Getting Your Best Health Care: Real-World Stories for Patient Empowerment:

Are Your Meds Making You Sick? by Robert Steven Gold

A Sea of Broken Hearts by John James

Cooking with Arthritis by Melinda Winners 6/17/11

Ellen in Medicaland: True Stories of How I Fell Down Medicine's Black Hole and Still Lived After All, by Ellen Kagan

Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization by Bart Windrum

Overdiagnosed: Making People Sick in the Pursuit of Health, by H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin

Provider-Patient Partnerships by Helen Meldrum and Dr. Mary Hardy

Advice: Professional patient advocates should read these books.

Adverse effects of an anti-depressant: A complete 180 degrees

The story of Peter Andrew Sacco, PhD:
I had a client I was seeing a couple of years ago who came to me after seeing a psychiatrist. The individual was diagnosed with obsessive compulsive disorder, generalized anxiety disorder, depression as well as aspects of personality disorders which included borderline personality disorder as well as dependent personality disorder. This client had been referred to me from a colleague/friend knowing I am a cognitive behavioural psychotherapist who also specializes in relationships, addictions, anger management and stress management. By the time I saw this client, they were in a suicidal state.

After doing a case history, I could not believe what I had witnessed. The client who was in their late 30's had no history of chronic or clinical depression and no history of personality disorders. Rating them based on global functioning and changes, I looked to major life events or changes in the last 6-12 months. Lo and behold, they had recently gone through a relationship break-up (not their choice), a recent career change (actually a better one, but one that was extremely stressful and they were learning on the job training) and some other familial upheavals. They never had a history of chronic depression, anxiety, obsessive-compulsive disorder (OCD) or violence of any sorts.

When I inquired as to when the depression and suicidal tendencies, as well as intense OCD and anxiety reached their highest levels, the answer was two weeks before coming to see me. They had been to see the psychiatrist who put them on anti-depressants, which they should not have been on for situational depression/grief, and these meds had provoked not only greater episodes of depression, but psychotic thoughts as well. The client (the responsibility falls on them for this aspect) was consuming alcohol while on the wrongfully prescribed meds. Upon getting off the meds, engaging in cognitive behavioural counselling (CBT) and stopping their consumption of alcohol, his mood state did a complete 180 degrees!

Peter Andrew Sacco, Ph.D., is a psychology professor and author of Sweet Acceptance Vs Bitter Resistance. You can email him at psacco1@cogeco.ca.

For professional patient advocacy stories in mental health, see Chapter 6 of Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Monica Foster and Nicola Williams of Ascot Media Group for setting this up.

Healthcare billing: He's pregnant, so they billed Workmen's Comp

In getting my son off to college, I just ran across this story, which occurred just before he was born, when my wife Daryl was pregnant.

Ken's story, Sept. 15, 1989:

We've kept Daryl's pregnancy confidential until recently, hoping to restrict the news to a small circle of our parents, closest friends, doctors, nurses, technicians, receptionists, and medical records technicians. Imagine our surprise when the first bill was sent promptly to her employer!
Telephoning, I learned that of course, this information was not released maliciously; bills for Workmen's Compensation are always sent to the company. But wait! This wasn't an accident; it was a planned pregnancy. And the process that brought it about was definitely not industrial, mechanical, or manufactured. In short, it wasn't a Workmen's Comp claim, as should have been obvious from a cursory reading. Apparently, the billing clerk at the doctor's office somehow entered Workmen's Compensation as the payer. When the computer did not immediately reject the claim, the clerk assumed it was okay, as did the laboratory staff and hospital staff. The computer didn't express any surprise that my pregnant insured wife Daryl was "male," nor that a urine sample was claimed as an inpatient procedure, nor that Workmens Comp will not pay for pregnancy (which my wife, I hope, did not incur on the job!).

During my phone call, I tried to reach the only person whose name appeared on the bill, but she had left the hospital staff. Instead, I reached a clerk who had initialled the bill. Her spoken English was modest, so I explained: No, my wife does not have a baby. No, we didn't have a baby that died. Yes, my wife is fat, but I don't mean that she is at high risk because of it; she is getting fatter, and in a few months she will have a baby and then she will not be fat. And so on.


The story has a happy ending: our HMO was billed, so neither Daryl's employer nor we had to pay. More importantly, our son was born several months later, and is now a fine young man of 21.

I wrote this story on the birthday of my father, may he rest in peace, and I can hear his ready laugh.

Ken's Advice: Dispute your bill if you have to, and keep your sense of humor.

Read more stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Integrative medicine for pain control: He has been fired by doctors

Dr. Corey Waller’s story:
M. is a 34-year-old male with a relatively normal medical history, except that he had an injury to his hand six years ago that led to complex regional pain syndrome (formerly called reflex sympathetic dystrophy). There was injury to his spinal cord, so he required relatively complex treatment, because of the pain and swelling in his arm. His pain proved very hard to control with the opiates he got from his providers. Some of them tried some pain interventions, but no one addressed how it affected his life in general, e.g., his child, or his ability to work.

He’d had continuing frequent use of the Emergency Department, and had been “fired” by multiple physicians who tried to wean him off the pain meds. So he was generally angry and frustrated as a result of that, which created a lot of defiance, making him ready for a fight in the doctor’s office or the E.D. So ultimately, he didn’t get good care.

He came here to our Center for Integrative Medicine in western Michigan . My RN case manager, our social worker, and I saw him. We identified some financial issues, so we had our financial counselor talk with him too. The social worker got at some of the psychological issues that were secondary to his pain. We went through some different approaches to his treatment, and settled on one option.

In his first week, he had three visits scheduled (we offer a lot of visits in a compressed time), and he showed up for all of them. He has called a couple of times, but hasn’t walked in, though we encourage walk-ins from our current patients.

So far, that has paid off for him; he has already been making changes in his life, like organizing some things, getting out of bed when he should, getting Physical Therapy, meeting our requirements for calling our social worker for his scheduled Touch Base calls, filling out the prior authorization paperwork for his insurer, etc. We put a lot in the patient’s hands, to make them responsible for their care as much as we can.

He has been fired by doctors, because of arguments with them. Now he’s following through. Contracts don’t work with these patients; poorly controlled pain or the disease of addiction trumps any contract with the doctor. A contract between a doctor and a patient for pain medications, e.g., that the patient won’t receive narcotics in another setting, is a way for the doctor to fire a patient, to justify letting that patient go. That’s appalling! If a patient has breakthrough pain at 3 a.m., and goes to the E.D., I see that as evidence that my treatment plan hasn’t worked, that I’m not doing my job. Instead of contracts, we give them trust. They become more trustworthy in doing their job as patients. "Don't mistake this as naivety. This approach was born from extensive experience with this population."

We don’t fire anyone. We see their behavior as a symptom. We use a lot of carrots, not sticks. One carrot for M. is that I’ll work tirelessly to handle his rare, frustrating and very real disease, i.e., I’ve done my reading in the medical literature, and have gotten the approvals from the insurer as needed. That’s doing my side of the bargain. And my social workers have talked to their counselors, and have done their homework. It has to be a team effort. If a patient calls us, we need to answer them in a timely fashion.

You have to deal with the psychiatric component as well as the medical and social components. We saw that M. had a financial problem, which could get in his way. He was smoking two or three packs a day – that’s a lot of money! We treated him for that to free up his money. We gave him nicotine replacement therapy with counseling and close monitoring.

This week, we’ll give him a choice among three pathways we’ve come up with. We’ll put together the risks and the benefits, and let him mix and match based on his concerns. We let the patient decide on the treatment plan when possible, because if the patient can choose the therapy, it’ll be more effective.

Dr. Waller’s advice: Ask the doctor: Give me three options, and tell me about their risks and benefits.

Thanks to Dr. Corey Waller for the interview, and to Liz Kidder and Bruce Rossman for setting it up.

Sharing doctors’ Open Notes with patients

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.