Going through more than most people, Ikaika is still smiling like there’s no tomorrow!

His dad passed away, he’s had three brain tumors, a stroke, and a lifetime dose of radiation…all before he was ten years old!

Ikaika is an incredibly amazing young man!  I don’t even know if I have the words to describe just the little I’ve learned about him during our session.  At seven years old, he was diagnosed with brain cancer.  He had surgery to remove the tumor.  Right after the surgery, he had a stroke and lost all function.  Most adults wouldn’t make it through all of this.  Yet, this kid, at seven years old, learned to survive!

The doctors started chemo and radiation shortly thereafter.  I’ve had friends go through chemo/radiation.  It’s not picnic, that is for sure!  It is a long difficult road that wreaks havoc on your body.  Yet, Ikaika learned to survive!

After a long difficult road of treatment, the doctors were sure they had eradicated all of the cancer.  I mean, how much more can a kid go through?  Three months after his last treatment, they found two more brain tumors!  Ikaika had to endure high dose chemo and his lifetime limit of radiation.  His mom told me, “One can imagine what that did to such a small body. “  Ikaika didn’t have to imagine; but he learned to survive!

As most young cancer patients, he spent most of his childhood in a children’s hospital; Seattle Children’s Hospital, in fact.  That is the same hospital where my daughter, Makayla, spent 2 months for rehab after getting hit by a car.  And, if all of this wasn’t bad enough, because of being sick and being gone so much, he lost most of his friends.  Despite all that, he learned to survive!

After his lengthy stay in the hospital, Ikaika lived in a small town in Montana, not too far from Great Falls.  About a year and a half ago, his family moved to Great Falls.  Before he left, Ikaika was told that he would never make it at the vastly larger high school.  One thing you don’t do, is tell Ikaika that he can’t do something.

His mom says, “Despite everything, he has managed to receive academic honors and will graduate to go onto becoming a social worker to help other kids.”  He is going to graduate this year with a 3.7 GPA; not too bad, for not being able to make it!  He also told me that he actually played some sports while growing up.  Yet another thing that doctors told him he would never do.  In fact, they didn’t think he would be able to go to school at all.

Time and time again, Ikaika proved the “experts” wrong!  He plans to get his college basics out of the way here in Great Falls, then transfer to a college or university in Hawaii.  That is where is mom grew up.  I know, from talking with him, he would love to get away from the snow.  Not sure what he’s talking about, we don’t get THAT much snow in Montana!

He worked as a counselor at a kid’s cancer camp near Spokane.  In fact, that’s what he wants to do after graduating from college.  He wants to be able to help kids who have to go through similar difficulties.  If anyone can be a blessing and help to such kids, it’s Ikaika.  He won’t just be a professional with a lot of education from a college; he has a lifetime of education from the school of real life experience!  Ikaika has left such an impact on me and I count it an extreme privilege to shoot his senior portraits!

If you look closely, you can see a faint rainbow to the right of Ikaika, right by the trees!

His mom says that Ikaika is very proud to be graduating from CMR High School in Great Falls, MT. He deserves to be!

As a photographer, when my sister walked in my office with an ultrasound that she was pregnant, I immediately had a million ideas running through my head for this sweet baby’s newborn photos. Kyle is my second nephew, and my boss got to photograph her first little one, so I was STOKED! As the time flew by, I was busy getting ready for our new bundle of joy to enter this world. I got a call in the afternoon of Thursday, March 14th  that it was time for me to take my nephew as my sister and her hubby head to the hospital for Nephew #2, who was on his way. Finally, Friday morning, March 15th,  at 12:36am, Kyle Henry was born and was the most perfect baby. The doctor’s even had to poke him and annoy him to make him cry… He was that perfect! I took big brother to the hospital later in the morning to meet his new brother. We all loved holding him and kissing his sweet face. He was just so perfect.

On Saturday morning, March 16th, at 5:00am, my mom got a phone call from a very hysterical daughter. Something was wrong with Kyle, they didn’t know what, and we needed to get to the hospital as soon as we could. That was probably the longest 20 minute car ride of my life. We had no idea what was going on. We get to the hospital and poor Kyle is in the NICU (neonatal intensive care unit) with all sorts of monitors hooked up to him, and his daddy sitting close, holding his little hands. Mom wasn’t discharged yet and wasn’t able to leave her room, so we mostly stayed with her to keep her calm while her baby was away.

The hospitals have a new test along with hearing, sight, etc… It’s called a Congenital Heart Defect Test. My sister (Jennifer), had heard of someone not taking the test and their baby had issues a while later that could have been detected early, had they taken the test. It’s $20 to do, and not required by the hospital. Jennifer decided to have it done, just as a precaution, like all the other tests. They hook the baby to a few monitors and test their pulse oximetry (how much oxygen is in the blood) and the heart’s pulse rate. It only takes a few minutes and is painless. If the baby tests positive, they are showing low oxygen in the blood and can be a result of CHD (congenital heart defect). Kyle tested positive, and was immediately rushed to the NICU. He didn’t take the extra oxygen they hooked to him, so the doctors just simply kept him on monitors to see how he was doing. While we were watching him just lay there, under a heat lamp, listening to beeps everytime his pulse ox was low or his breaths weren’t consistent, was the most draining experience of my life. I just wanted to pick him up and take him home. He looked fine to me. My heart still races everytime I hear a beep anywhere.

The doctors at Providence (the hospital Kyle was born in) decided to call a specialist from Seattle to come do an Echocardiogram on Kyle, to see how his heart looked. The echo gives a more clear picture all the way around his heart so the doctors can assess what to do next. After what seemed like forever, about 3 hours, the specialist was finally there. The tests were done and results were in. My mom, dad, and I waited patiently with Kyle while Paul & Jennifer (Kyle’s dad & mom) were talking with the doctors about the results. A very somber Paul came into the NICU a little while later saying that there were 5 different things wrong with Kyle’s heart and they needed to make a decision right away with what hospital to transfer him to.

A few hours later, a paramedic team from Seattle Children’s Hospital was there with a lot of machines and a special ambulance just for Kyle. They hooked him up to all the machines and took him away. Leaving the hospital was very hard to do, especially for a mom who is leaving without her baby in her arms. We all rushed to Seattle and waited until we could see him.

Fast forward a few days… We finally had a plan from the doctor’s. He would need open heart surgery very soon to correct 2 problems, and if he does well, he’ll need 2 more surgeries later in his lifetime. Seattle Children’s is one of the best hospitals in this nation for little ones, and we are incredibly grateful everyday for all that they do for him. His nurses and doctors are dedicated to helping Kyle, making him comfortable, and comforting Paul & Jennifer as well. Kyle had his first open heart surgery on Wednesday, March 27th. He did great. There were a few issues after the surgery during his recovery and he is still in the ICU, but he is getting better slowly.

If you would like to help out, prayer is the most powerful thing that we have through God, so continue praying for him. It really helps and works great. There is healing power in our Savior and we believe for healing over Kyle. Also pray for peace, comfort, and understanding for Kyle’s parents and family. We know he is in extremely great hands at Seattle Children’s. And continue to be thankful for your family and babies, hug them and tell them you love them everyday. Cherish every annoying moment when your 3 year old won’t stop asking “why”. Those are the moments we are looking forward to with Kyle in the future.

If you would like to send anything to Paul & Jennifer or Ethan (big brother) you can do so at:

Kyle Lindemann A375

Ronald McDonald House

5130 40th Avenue NE

Seattle, Wa 98105

-Auntie

This may seem like a real no brainer, so I guess it’s important to remember science doesn’t leap to conclusions quickly.

I am so thankful that we are able to stay in the Ronald McDonald House here in Seattle.  They have everything we need, and plenty for the kids to do.  There is one thing though; the internet does not work very well.  There are 80 families trying to use the same internet source.  Well, I can complain, but its stupid to do so.  Its just frustrating.  I wanted to get this post done 2 days ago, but I haven’t been able to because the internet wouldn’t load anything.

So, Saturday was a pretty big day for us; well for Makaylay mostly!  For the first time, we got to take her out of the hospital on a brief two hour visit to the Ronald McDonald House.  This was the first time she left her hospital room since she was admitted over 10 weeks ago.  This was a bit of a trial to see how she would do.  We want to be able to take her to church on Sunday mornings.  Thankfully, the RMH is just a few blocks away from Seattle Children’s Hospital.  It made for a perfect destination for her first outing.

The really awesome thing about this trip is that the Seattle Seahawks‘ Boosters had a big activity planned for the residents of the house.  They had the Seattle SeaGals, the cheerleaders for the Seahawks, and the Blue Thunder Drumline, that plays at all the home games!  It was a pretty cool opportunity for Makayla and the other kids to meet some pretty neat people.

Makayla seemed to enjoy meeting the SeaGals!  There was a bit of a glow in her eyes.

Makayla poses with some of the SeaGals from the Seattle Seahawks

Unfortunately, we just missed getting to see Blitz, the Seahawks’ mascot.  Kelly Jo, Abby, and Bug were able to get pictures with him.  This entire trip came on the heels of a special visit by the Seahawks’ QB, Russell Wilson.  He came by a few days before to visit some of the kids at the hospital and stopped in Makayla’s room.  We even got to take a picture with him and his wife.  Today, I found he had posted the picture on his Twitter feed!  Check it out!

We so appreciate the support that the folks from the Seattle Seahawks show to these kids!  I think it is quite amazing that they take time out of a their busy schedules to come spend time with kids who are struggling with everything from being paralyzed to having cancer.  After getting to schmooze with the cheerleaders for a while, we went outside to watch the Blue Thunder Drumline put on a bit of a performance.  I had seen YouTube videos of them before and some phone videos that a friend had posted from a game she went to.

Makayla, braving the cold rainy weather, watches the Seattle Blue Thunder Drum line perform

This is the part I was most interested in!  Having been a member of the Michigan State Spartan Marching Band for 3 years back when I was in college, I love drum lines.  They did not disappoint in their performance either!  Not quite as good as the SMB drum line, but still very entertaining.

The Seattle Blue Thunder performs for the kids and families of the Ronald McDonald House

I loved watching the kids during the performance!  Unfortunately, it started raining while they played.  And the lens that I am using, the Canon 50mm f/1.8II is not a good lens to use in the rain.  It is anything but weather sealed!  But I stuck it out best I could and tried to capture some of the fun of the day, and the joy it brought to the kids!

1.  DENIAL/ISOLATION

My elementary school years were spent in a haze of denial, and probably, the same can be said about my middle school years.  From preschool to maybe fourth grade, I didn’t really think about the fact that I was different than the other kids.  I was young, and they were too, and they were more accepting of me back then.  By fifth grade though, they started to ignore me.  And sometimes, at recess, the boys would tease me so that I would start chasing them just to get them away from me.  And they would laugh.  At me.  I had  a walker (still do), and so I think the other kids didn’t really associate me as being one of them.  I was the “weird” one.  I did not have feelings.

But of course, they were wrong.  Of course, I had feelings.  And of course, they were easily hurt.

But, oh, I had friends, both real and imaginary.  I hung out at school with a couple girls, and we had a very messy relationship.  I don’t want to get into details, but you know how girls are.  I started crying every single day.  I didn’t understand anything, and probably understood everything I needed to at the time.  I knew I’d never fit in.  It was not okay.  And it would never be okay.  I would never accept it, at least not until the last two years of high school, when I gave up on the majority of my peers.  They mostly ignored my pleas for friendship for years, and I was left out of everything. So finally, I was like, fine, be like that.  And I thought, one day.  That’s all.  One day.

My “real” friends back then were fictional ones.  Mary, Dickon, and Collin from The Secret Garden.  Sara and Becky from A Little Princess.  Meg, Jo, Beth, and Amy from Little Women.  And then I had the girls from The Babysitters Club series:  Kristy, Claudia, Mary Anne, Stacey, Dawn, Mallory, and Jessie.  Anne from Anne of Green Gables.  Laura from The Little House on the Prairie.  You know, those types of friends, the ones who could never hurt me.

2 and 3.  Anger and Bargaining

Many, many, many times during my childhood, I tried to make “deals” with God, or the entity that was my idea of God.  I was raised in the Catholic church, and usually spent Sunday services eyeing the Crucifix above the altar with a mixture of fear and disgust.  Fear because oh my gosh, there was a dead body on the cross and everyone else seems to think it is normal!  Disgust because if He knew what was going to happen to Him, why didn’t He do anything about it?  Couldn’t He have just hidden from His enemies?  I really didn’t understand why He died, why He choose to die.  He could have just slipped from their grasp, right?  He could have run away.  Like I did, and kept doing, over and over.

I’ve always identified the most with the Bible story of Jesus raising the little girl from the dead, like from the minute I heard it or read it, whichever it was.  I tried to reconcile that Jesus with the terrifying one in my head, and I just couldn’t do it.  I remember waking up, drenched in sweat, in the middle of the night, from a dream, nightmare, really. In that nightmare, I was alone in the church, and it was dark except for candlelight, which was everywhere.  I heard something, like wood breaking, and then I saw it.  Him.  I saw Him.  He was flesh and bone, not like He was on the cross, where He was ceramic or whatever he was made of, porcelain, etc.  AND HE WAS COMING FOR ME.  Bleeding profusely from His wounds.  I could see a trail of blood behind Him.  My heart was in my throat.  I couldn’t scream even if I wanted to.  I couldn’t move at first, frozen by terror, and then I could.  I raced to the door, but it held fast.  I was trapped.  That was when I woke up.

Since having that dream, I’ve always wondered what would have happened if He had caught me.  Back then, I thought He was going to hurt me, even kill me, and that is why my survival instinct took over.   That is why I ran.  Interesting thing:  In my dreams, most of them at least, I am free from the limitations of my physical body.  This is how I see myself most of the time.  My dreams are a manifestation of that.  Of course, I know now, that if Jesus had caught me in my dream, He probably would have just pulled me toward Him in an embrace.  He probably would have whispered comforting things in my ear. You aren’t alone.  I’m here.  But I guess I wasn’t ready to hear it.  I fought it.  I fought Him.  There wasn’t much I had control over, and there still isn’t, but this is the one thing I had total control.  I don’t know.  Maybe I liked feeling sorry for myself.  Maybe I liked being angry.  My anger gave me something to focus on, and I held on to it with all my strength.  I kept asking why.  Why am I like this?  If You loved me, then You would heal me.  I know You can heal me.  I want to be healed.  When I wake up tomorrow, I want to be healed.  Please.  There is nothing I want more.

But I woke up with the same body, the same problems I had the day before.  And I said:  FORGET YOU, JESUS.  I was so mad.  So disappointed.  So heartbroken.  I did not understand that wasn’t how Jesus worked…

3.  DEPRESSION

The earliest stages of grief are tied up with each other, My childhood was full of denial, bargaining, and depression.  I was a little ball of anger.  And then, I saw a picture in my first photo album… the ones that had pictures of me from birth to after the encephalitis.  There aren’t many of me in the hospital – who wants to remember that?  But there is one that spoke to me…  it is one of me, holding hands with another little girl.  I only know she’s a girl by the caption:  ”The Smiley Sisters: Missy and Danielle.”  We are more or less bald and wearing hospital pajamas, footie sleepers, holding hands, and emphatically NOT smiling.  In fact, we look miserable, like we were lost.  I asked my mom about it once.  She said the nurses at Seattle Children’s called us that because, despite that picture, whenever we were together, Missy and I always smiled.  So much.  The picture doesn’t do our friendship justice.  Missy was my first friend who wasn’t part of my family, who wasn’t a cousin.  And then…  and then I had to ask my mom what happened to Missy.  I already knew she’d had some form of leukemia.  My mom looked me in the eyes, and told me, “Honey, she died.  Not too long after that picture was taken.”

I didn’t know I could break anymore than I already was broken, but I did break more then.  One thing I’ve learned in my 31 years is that there are no limits to how much you can break.

Just like there aren’t any limits to how much you can heal…

I think my depression really began before that moment of truth, though.  I think it began in the moments in which my first scoliosis brace was being made.  I was 9 or 10, and these people who were supposed to be helping me had me lay down on a stretcher just had a thin strip of material down the middle, and empty spaces on either side.  I was so scared of falling, despite the fact that these people said they wouldn’t let me fall.  Where were you, Jesus, when I was so scared?  I felt so vulnerable and I cried and tried to fight.  My philosophy back then?  Always go down fighting.  And so I fought.  But I was no match for them.  No match for the hot plaster they tried to suffocate me with (not really).  I was just a little girl.  So helpless.  So scared.  So confused.

I don’t even remember hearing the word “scoliosis” until much later, much, much later.  Like in high school.  I’d had back surgery in November of my eighth grade year.  I knew pain.  I knew the embarrassment and awkwardness that came with wearing a back brace.  I hated it all.  If wishes were punches, then my troubles would have been punched.  HARD.  I was finally allowed to shed the brace in the winter of my freshman year of high school, and it was so freeing.  But my back problems were not over. They followed me into adulthood.  I had only a partial spine fusion in 1995.  They only did the bottom half, and over time, because it was a temporary solution, it began to break down.  I was in constant pain the year after I graduated from college, and the more active I was, the more the pain intensified.  Finally, I had surgery to repair the areas that were wearing down.  I thought I knew pain, but boy, was I wrong.

My first night home from the hospital, I felt something drop, or give away, inside of me, and then I felt a burning sensation in my leg.  I didn’t know how bad it would be until the next morning, when I tried to get out of bed. On the pain scale of 1 to 10, it was a 20.  Seriously.  I wanted to die.  I begged God to take me.  I screamed and cried multiple times a day, for 4 weeks straight, through 2 rounds of steroids.  The steroids only helped on the first days I took them, when the dosage was the highest.  I lost 10 pounds, weight I couldn’t really afford to lose.  The diagnosis?  Pinched nerve.  My doctor told me that he had only 60% chance of fixing me (no burning pain) with a second surgery.  The problem was, everything he had done in the surgery before was now loose inside me, and I know now he was afraid that my pain was permanent.  But thank GOD ALMIGHTY it wasn’t.  I wouldn’t be a functional human being today if it was permanent. I have a very low pain tolerance – it’s so low I can’t even claim to have any pain tolerance at all.

That was a dark time… a time of testing.  I dunno whether I failed or passed.  It is either/or at this point.  I do know that I am human, and where I thought I could not handle that level of pain, God knew I could…  because He knew what I was made of…  Because HE made me…

TO BE CONTINUED.

What I found was quite interesting.   Actually I was amazed.  It’s been a while since I was amazed by one particular company’s dedication to finding a solution.

Anyone want an interesting read, look at the Seattle Children’s hospital case. Gemalto, a company I knew little about just one week ago has dropped a bomb.  They’ve answered my wish list for plugging the biggest hole in IT security in the last three decades.  Neither company are clients of mine, but Gemalto is doing stuff that is leading edge both security and work flow. I work Financial, Healthcare, The Cloud, BYOD (Bring Your Own Devices), and Social Network market segments as an IT Security Expert. It is  finally nice to see a company that’s in this with the proper perspective. This is not an endorsement. It is a statement of my observation. And I don’t impress easily.

The solution that impressed me?  Gemalto is using NFC (Near Field Communications) to secure endpoint access control.  Finally when a user steps away from an endpoint, it closes down immediately.  And the industry is Healthcare, the industry whose data breach rate for 2011 was astronomical.   I’d like to commend Gemalto and Seattle Children’s Hospital.  Together they likely have taken a leap that will lead to all industry closing an open door in IT security that has been open for nearly 30 years.  And in an effort to secure Electronic Health Records from the ridiculous data breach rates of 2011.

Bravo Gemalto!

Bravo Seattle Children’s Hospital!

Together you two have taken a giant step that may eventually end identity theft.   Two more noble companies I’ve not found. In a world where corporate profits seems to have short circuited consumer protection, I applaud both parties!

EHR is about to become safeguarded.  Finally!

Kimberly Hiatt worked in a large, highly-regarded medical facility, surrounded by fellow health professionals.  Yet she clearly felt alone and keenly, personally responsible for the tragedy.  An adverse event is a health care-associated harm or injury.  And adverse events like this one occur, far too often, and most experienced clinicians have been part of one, at least.  Patients are, of course, always the first victims of an adverse event – but they aren’t the only ones.

When patients are harmed, the clinicians closest to those patients are often devastated.  A few heath care workers might take a comfort in reminding themselves that the number of patients helped every day far, far exceeds the number of those hurt.  Or they blame the system somehow.  But most blame themselves.   In fact, patient safety expert Alfred Wu, M.D., M.P.H., created the term ‘second victims’ to describe the emotional trauma of the physicians, nurses and others connected to these events.  The health care providers exhibit anxiety, depression and shame to such a degree that they, too, are wounded.

Here’s how Dr. Wu describes the beginning of second victim syndrome in an article in the British Medical Journal:

Virtually every practitioner knows the sickening realization of making a bad mistake.   You feel singled out and exposed – seized by the instinct to see if anyone has noticed.  You agonize about what to do, whether to tell anyone, what to say.  Later, the event replays itself over and over in your mind.  You question your competence but fear being discovered. You know you should confess, but dread the prospect of potential punishment and of the patient’s anger.  You may become overly attentive to the patient or family, lamenting the failure to do so earlier and, if you haven’t told them, wondering if they know.

Is there anyone who can’t relate to this description?  In any field or profession?

Here we are, in an advanced, rich society, blessed with abundance and plenty of every nature, and yet we cannot escape our ‘name, blame and shame’ mentality.   We do it to ourselves, then to others.  It’s better in some areas, to be sure, but it’s not gone.  When things go wrong – and they will – if we don’t torture ourselves about it, we immediately look about for someone (that is, someone else) to blame.  This would be great if it worked, if it kept patients safe and strengthened and supported those helping them.  It does not.

For many years now, according to experts, including Dr. Carolyn M. Clancy, Director of the Agency for Healthcare Research and Quality, patient safety advocates have promoted a culture of safety that focuses on the role and responsibility of systems while de-emphasizing blame.  The goal is to install reporting mechanisms so that patient safety events – health care-related injuries associated with the process and structure of the care itself, rather than with a patient’s underlying or physiological or disease-related condition – are reported in an anonymous, safe environment.  Near-misses are included, too.  The object of the exercise is to learn from all the events, to understand what went wrong, and how, and to prevent future injuries.

How is this working out?  There is no doubt that systematic reporting is vital to improving patient safety.  Health care providers, however, are still grappling to balance this approach with the real need to correct individual behavior where necessary.   Many clinicians still regard any patient safety events as personal failings.

Second victimhood is far more common than we realize.  This internalized judgment becomes a self-inflicted emotional wound, according to many experts, and then along comes the review and judgment of an oversight body (such as a nursing board).  The internalized self-criticism is thereby reinforced.  Consider Kimberly Hiatt’s heartbreaking situation.  Oversight bodies are an indispensible part of a safe, effective health care system, but more than a few clinicians feel singled out, even persecuted,  by such bodies.

Are there arrogant, indifferent doctors out there?  Yes, absolutely.  Are there distracted nurses and ill-trained techs?  Undoubtedly.  But most of our practicing physicians, nurses, NPs, PAs and other health care professionals are dedicated, compassionate and well trained team players committed to their patients, committed to good outcomes.   And they are people, not machines – just like the rest of us.  You want smart, thoughtful, loving people taking care of you when you’re ill, not robots.  Correction they may need from time to time – relentless pressure to be perfect not so much.

Soaring health care costs are all but overwhelming this country.  Millions of Americans are without access to even basic care.  There are astonishing medical advances and breakthroughs out there we soon won’t be able to afford.  Our soldiers and veterans are suffering lifelong consequences of their service, our politicians are arguing about everything, our aging population is vulnerable and threatened,  and  chronic disease and condition rates may send the nation into bankruptcy. How are we not working together on all of this, each part assuming its own responsbility?

Tomorrow we will continue our look at  second victim syndrome.  There’s a good chance it represents more than just one of the problems of our health care system.  It maybe says something about our culture in general.  And if we are committed to developing a health care system that truly reflects the strength and character of this nation – and we should be – we might consider consciously moving away from ‘name, blame and shame’, towards a more enlightened  approach.

At the forefront of the transportation decisions surrounding getting to Seattle was money. Air travel in the 70′s was very expensive, and even if funding could have been secured, I think my Mom was deathly afraid of flying. Gasoline was cheap in those days and so driving won out in the end.  We needed to meet with the doctors at the University of Washington and have them assess my back. We had very few details of what the surgery even entailed. It was early July by now and there was some urgency to get this done before school started. If not it would surely complicate matters.

So…Mom drove Carla and I to Boise to Grandma and Grandpa Barrett’s house, and then they they drove us the rest of the way to Seattle.  Steve stayed behind in Laurel with Dad. This was going to be a short visit to Seattle, so we all felt comfortable with the decision. Steve would be able to help Dad with some of the business chores, after all he was 15 and old enough to be on his own while Dad was out on sales calls.  Steve also had a girlfriend, Kathy, (now his wife) and he was welcome to spend time at her house.

The trip was largely uneventful, we made it into Seattle late in the afternoon. I can still see, in my minds eye, the beauty of Seattle and the surrounding mountains as we dropped down over Snoqualmie Pass. I was familiar with the beauty of Montana, but this was something that seemed to take my breath away. Everything was so green,offset by enormous bodies of  bright blue water, all framed in snow-capped mountains. As we drove closer to the city my young, small town girl attention was quickly shifted to the winding freeways, exits and 6 lane roads. Buildings taller than expected.  So, this was a city. As we made our way north on I-5,  Lake Union came into view, then the Space Needle.  The University Bridge felt as though it was 5 miles long. I was in love with this city.

The University Hospital was not far off the exit, but in those few blocks I was delighted to see real hippies. I was 13, destined in my own mind to be a hippie someday. My face must have been smashed against the back seat window. I didn’t want to miss a thing, the clothes, the music, the dance. In those few blocks, peace signs became more than a one dimensional poster hanging on my bedroom wall.  They became tangible….solid. I etched as many images as I could in my mind, knowing someday this would be my life….someday.

We made our way to the University walkway and into the corridors. I felt dwarfed by the enormity of the place.  We met with two doctors that examined my back and looked at the x-rays we brought with us from Montana. They sadly told us that the surgery could not be done at the U of W, but there were two doctors at Seattle Children’s Hospital that were doing a spinal corrective surgery. They made some phone calls and managed to get an appointment to see these doctors  that afternoon.

We found our way to the children’s hospital and met with one of the doctors,  Dr. Tuber.   Keep in mind, none of the local doctors in Montana knew much about this surgery, so we were going into this pretty blind. We had imagined that I would have a quick surgery, and drive home in a few days. Hell, we hadn’t even decided if we would agree to a surgery. There were lots of unanswered questions. The doctor examined me, and then spent much of the afternoon sending me for more x-rays and blood tests. There were no CT’s or MRI’s or bone imaging in those days. Just lots and lots of x-rays.

When I was off having tests, Dr. Tuber met with Mom and gave her a quick synapses of the surgery. He explained the surgery was named after Dr. Paul Harrington who designed the device in mid 1960. He discussed that the Harrington Rod system achieves correction of the curve by stretching or turning the spine, through the use of metal rod implantation. The straight rod, containing a ratcheting mechanism, is positioned along the inside or concavity of the curve. It is attached to the spine with two hooks: one set into the vertebra at the top of the curve, the other into the vertebra at the bottom of the curve. Then, employing the ratcheting mechanism, the surgeon stretches the spine to straighten the curve.  Most often the ratcheting device (referred by the doctor as a “jack”), is left on the spine and is only removed if it causes problems later.  He also pointed out that in many cases, they also chip bone off the hips and ribs and place the small bone fragments between the vertebrae. This bone eventually grows attached to the vertebrae and “fuses” the spine into one solid, non-movable bone. This was thought to further strengthen the spine.  There was also the question of whether of not they would want to try traction.  This would require surgically implanting bolts in my skull. They would then attach weighted ropes to the bolts and around my ankles. This would mean I would have to lay flat, with this counter-weight system, in an attempt to “pull” my spine straight.  This option could take months.

When I spoke with Mom later she told me the doctor was quite hurried and matter-of-fact. I don’t think she asked a lot of questions regarding recovery and such.  She explained to me that the doctor needed two weeks to go over all the x-rays and tests and determine if I was even a candidate for surgery. They gave her an appointment time in 2 weeks and sent us on our way.

That was unexpected. We thought I was going to have the surgery done then, not in two weeks.  So, more planning was embarked upon and it was finally determined that Carla, Mom and I would return to Boise and stay at Grandma and Grandma Barrett’s  house instead of going all the way back to Montana. When appointment time arrived  they would return us to Seattle for the appointment.  By all accounts Steve and Dad were doing okay. Mom was assured they were managing, but I could tell she was unsettled.

There was a huge naivety on our part as to what the future held, and yet unspoken, I think Mom and I both felt we were preparing to embark on a huge life-changing event.

We were right.

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The following is an essay I recently wrote about the health professions regulatory system in the US. It is written in the format for Narrative Matter’s “narrative policy” essay, and as such is longer than my typical blog posts. Please share widely, with proper attribution, of course…. I want to thank Morris M. Kleiner for reviewing drafts of the essay for accuracy.

One evening this past April, I was sitting on the floor of O’Hare airport, near a packed gate, waiting to board my flight back home to Seattle. Headphones on, working on my laptop, I clicked on the Seattle Times news site. “Nurses’ Death Follows Tragedy,” was the title of the lead story, with the byline summary, “The suicide of Kimberly Hiatt, a nurse who accidentally gave an infant a fatal overdose last year at Seattle Children’s hospital, has closed an investigation but opened wounds for her friends and family members.” (Carol Ostrom, The Seattle Times, 21 April 2011)

I read the brief article, and then stared at the ubiquitous overhead TV screens in the waiting area, wondering why her death wasn’t included in the endless loop of news. Kim’s story seemed weighty—national in scope. Kim was 50 when she died from hanging herself. She had miscalculated a medication dosage for a medically fragile infant, and immediately reported her mistake. This was the first serious medical error Kim had made in her 25-year career. An official medical report stated it was unclear that the medication error contributed to the infant’s death. But the hospital fired Kim. And the Washington State Nursing Quality Assurance Commission—the sate nurse licensing unit—fined her $3,000 and placed such severe restrictions on her nursing license that she could no longer find employment as a nurse.

In the weeks following news of Kim’s death, I was left wondering how this could have happened—not the medical error—but the cascade of negative consequences for Kim. I thought I knew how health systems worked; I had a doctorate in health policy. And I was convinced that Washington State had a progressive health professions regulatory system—that things like this couldn’t happen here—or now.

The week after Kim’s death hit the news, the topic of my health policy class was quality of care. I planned to talk about just culture: having open, fair, and just organizational cultures supportive of patient safety. There is strong evidence indicating that just cultures are more effective at ensuring patient safety than are traditional punitive health care work climates. Kim was an alumnus of the nursing school where I taught. Most of my nursing students were graduating in a month and would obtain their Washington State nursing license. Our class discussion was no longer at the theoretical level.

But I had a more personal connection with the news of Kim’s death: I was seeking closure to an investigation of my own nursing license by a health regulatory board. I was seeking both emotional and literal closure. For the past year, I had been writing a book about my work as a nurse practitioner providing health care to homeless people in the 1980s. Back then, my life and my career had been derailed by a collision with a state licensing system.

Early in my career as a nurse practitioner, I had my nursing license investigated by the Virginia Health Regulatory Boards of Medicine and Nursing. At the time, I was the sole provider at a clinic for Richmond’s homeless population. I was working within written protocols with a supervising physician available for telephone consultation. This was in compliance with the practice regulations in Virginia. In my second year of working at the clinic, I had an unannounced visit by an investigator for the Health Regulatory Board. I remember the day—and him—vividly.

I noticed an older man walk into the waiting room of the clinic. His shoes were what I noticed first: beige puffy comfort shoes with Velcro straps. He pulled out a business card and handed it to me.

“ I’m doing an investigation of a complaint made to the Boards of Medicine and Nursing about your practice.”

I was stunned. My mind raced through worst-case scenarios: had I killed a patient?

“What complaint? And where did it come from?” I asked.

“I can’t tell you that information. It was requested to remain anonymous. I’m just gathering information for my supervisors.”

He asked to see my patient files and medication dispensary. He stayed for several hours, interrupting clinic.

The health regulatory board investigation of my nursing license sent destructive tentacles—like mold hyphae—throughout my life. The process of the investigation remained unclear to me. I was told they were investigating my scope of practice, including prescribing of medications. Fear was the first thing I felt: fear verging on terror. The most immediate threat was the potential loss of my nursing license. This would have devastating effects on my family since my salary supported all of us. My husband was still in seminary, and I was paying for childcare for our then five-month-old son so I could work and my husband could finish school. An additional threat was the loss of my professional reputation: people assume there are valid reasons for an investigation.

For several months after the investigator’s initial visit, I couldn’t sleep well. I lost so much weight that I had to stop nursing my baby before he was six months old, and that made me feel even more guilt as a working mother. My husband and I got in spats. Due to the ongoing investigation, I was forced to work at the clinic in reduced capacity. The Health Regulatory Board kept threatening to close the clinic, and they finally did for several weeks in the eighth month of the investigation.

The Board of Directors for the clinic where I worked responded to the investigation by increasing their efforts to hire a full-time physician. No physicians were clamoring to do this work. The clinic Executive Director enlisted the help of a volunteer lawyer who talked with lawyers at the Virginia Office of the Attorney General, who advised the Health Regulatory Board. No one seemed to know what nurse practitioners could and couldn’t do. I was told it was a contested area of state law, and that they had never had a nurse practitioner as the only health care provider for a clinic. Even at the time, I knew I was a pawn in the grand political game of professional turf battles.

I was treated as if I were guilty until proven innocent. Investigators and lawyers told me not to talk to anyone about the situation or it could make the outcome worse—effectively issuing a gag order and isolating me from seeking help. More recently, I’ve asked myself why I didn’t get my own lawyer back then. No one advised me to and I couldn’t afford one. There were large gaps of time of not hearing anything about the investigation, but I was always aware that it was unresolved, like a large noose dangling above my head that could come down around my neck at any time.

The stress of the investigation contributed to the dissolution of my marriage, loss of my job, and my own spiral into homelessness. I seriously contemplated suicide on several occasions during the investigation. It was such a painful chapter of my life that I had not been able to look at it before—or talk about it.

Twenty-five years later, as I was writing a book about my work with people experiencing homelessness, I wanted to include the investigation of my license. I realized I had no documentation on it. When I read the news of Kim’s death in April of this year, I was awaiting a reply from the Virginia Board of Nursing to my written request for a copy of my case file. I had expected some resistance, but was confident I would eventually see copies of the investigation. I asked for redacted records: I was not interested in knowing who had ratted on me.

Jay Douglas, the Executive Director of the Virginia Board of Nursing, refused my request. In a telephone conversation with me in late February, she stated that they were confidential records, “Board property, and besides, Virginia’s Freedom of Information Act doesn’t apply to people who are not state residents.” This made me angry: confidential records on me by a government agency that I wasn’t allowed to see? This wasn’t a matter of national security; I wasn’t a terrorist. And freedom of information—the right to a transparent and accountable government—only applies to certain citizens? I studied the relevant laws and wrote a polite rebuttal based on the Code of Virginia. While I waited for her reply, I began to do more research on health care workforce regulatory systems. Between my own experience and that of Kim Hiatt, I wanted a better understanding of how these systems worked.

Health Care Workforce Regulation

All states in the US license health care professionals, as well as an increasing number of other occupations ranging from architects to wrestlers, and even frog farmers. These are labor market institutions, administrative agencies with executive, legislative and judicial powers, ostensibly under public mandate to protect public health and safety. According to economist Morris M. Kleiner in Licensing Occupations: Ensuring Quality or Restricting Competition? (Upjohn Institute Press, 2006), they are self-policing, self-regulating bodies, and have been identified as state-sanctioned monopolies. The most autonomous units of state health care licensing systems—medical boards—have been formed by powerful professional associations and their lobbying arms which make large campaign contributions to state legislators. Many state legislators who serve on health subcommittees, which make the health care workforce regulations, are themselves health care providers and members of the professional organizations “funding” state regulatory systems.

But do these state health regulatory systems really protect public health? While there may be the perception of protection from ‘charlatans, quacks, sexual predators and drug abusers,’ it is not supported by data. Kleiner points out that there are no data to support improvement in overall quality of health care by state health regulatory systems. There is some indication that higher-income people gain from stricter health professions licensing, but there is no measurable impact on overall quality of health care for the population as a whole. There is robust evidence that by effectively limiting supply, licensing of health professions increases overall health care costs, and creates longer wait times for health care services. This worsens health inequities in the US. In addition, licensing laws that standardize health care services effectively restrict innovation and improvements in the health care system. Health care workforce regulatory systems in all states are notoriously inefficient, with many taking over two years to investigate and resolve even the most serious of cases. There are wide inconsistencies between the different health professions licensing boards in how they discipline individual health care providers for similar infractions, as well as inconsistencies between states.

The Pew Health Professions Commission Taskforce on Health Care Workforce Regulation—a national, nonpartisan panel of experts—issued a series of reports in the late 1990s’. They called this a significant public health policy issue that flies under the radar. They stated there is a lack of oversight and accountability of the state regulatory systems, as well as a lack of effort to provide consumers access to information on health care providers’ practice histories. They called for national scope-of-practice standards, as well as consideration of changing from licensure to certification of health care providers, which is more likely to improve overall quality of care while not driving up health care costs. According to the reports, the next best alternative to a certification system would be to appoint more neutral parties as the decision makers on licensing boards, with members of the profession available to advise board members on technical issues.

None of the major Pew Commission recommended changes have been made. Instead, there have been incremental reforms, including improved websites, and uniform sanctioning guidelines, which sound good in theory, but have not proven to be effective in practice. According to Kleiner and the Pew Commission experts, powerful professional associations that helped create the licensing system in the first place, benefit from its continued existence. Higher income health professionals benefit from limiting supply by restricting competition, thus boosting their own salaries. Administrators at universities and technical schools support its continuance, since their institutions benefit financially from licensing requirements tied to entry and continuing education. And the current state licensing system continues because the risk-averse voting public has been repeatedly told it is an effective system protecting them from harm by sorting out the “bad apples” of incompetent, impaired, immoral health care providers.

______________________________

Ms. Douglas informed me that without a court order she refused to provide a redacted copy of my individual case file. It took hiring a lawyer to convince her to provide a copy of the Case Decision Memorandum for the investigation of my nursing license. Dated February 13, 1989, the memo stated that if I continued consulting with my supervising physician as reported, no further action would be taken. It concluded, “There have been no further complaints or problems and the case is closed with no violation and no sanctions.” The memo confirmed that it had been a scope of practice issue, and that the Medical Board had wanted tighter reign on my nursing practice. What surprised me though was the date of the memo. While I had remembered the investigation as being a painfully long process, I hadn’t realized it took 16 months. My husband and I had separated a few days before the official closure of my case. And by that time I was disillusioned with nursing and with our health care system.

Ironically, the same week I received the one-page Case Decision Memorandum, I received 1,500 pages of redacted, detailed information on the case of Kimberly Hiatt from the Washington State Health Department. I requested Kim’s files in order to better understand the current decision-making process of the Nursing Commission in a state where I am responsible for teaching nursing students health policy. And in a state where I maintain nurse and nurse practitioner licenses. Reading through Kim’s records only deepened my distrust of the health professions regulatory system. The Washington State Nursing Commission refused the request by Kim’s lawyer for copies of their investigative reports in order to adequately advise his client.

I remind myself that Ms. Douglas and others in the health regulatory system are well-intentioned people who believe their work promotes public health and safety. But the system they work within is not part of a just culture. The current regulatory system is not working to protect public health and safety. It is not working for the majority of health care providers, who justifiably view it as capricious, punitive, and with little oversight or accountability. If we are to have a higher quality and more equitable health care system in our country, it is essential that we reform the byzantine health professions licensing system.