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Tuesday, May 14, 2013

Stair Steps

This is story about the jacket painting of TomEvans, MD.   If you read Tom’s biography you’ll see many accomplishments in his long career.  He has succeeded at so many things.  He is President and CEO of Iowa Healthcare Collaborative.  He has a BA, MA and MD to his name.  He was the Chief Medical Officer at Iowa Health System.  He was on the board of the National Patient Safety Foundation and is currently working with HEN’s in the Partnership for Patients Initiative.

But today we are going hear about Tom’s failure.   

This is Tom’s jacket: “Stair Steps.”

"Stair Steps" a jacket for Tom Evans

Tom is the eldest of nine children.  So like many large families they were arrayed as stair step order in family portraits.  In this painting you can see Tom, his father and all of his siblings in descending order.

Here is Tom telling story that inspired this painting:

“This story is about my mother.  As a family physician, and she a nurse, we always had a fairly frank and open discussion about medical issues.  These took on an entirely new and unexpected dimension when her health began to fail. 

I am the oldest of 9 children born over an eleven year span.  I think we were more of  a herd than a family sometimes!  My mom was an RN and worked nights at the hospital.  Dad was an insurance agent.  My parents were always there and worked hard to make sure everyone had what they needed. 

Mom became diabetic late in her 50s.  Always too heavy and non-compliant with diet, she never took real good care of her diabetic management even though she was a nurse.  I think she was in denial.  She was a happy, loving mother and the perfect grandmother to our kids. Complications began to catch up with her in her 70’s and by age 77, she had accumulated several medical conditions that made her a prime candidate for the medical system.  Her diabetes was a constant challenge in balancing diet and insulin (she ­refused to exercise!).  She also developed heart disease.  She had a “silent” heart attack (no symptoms) and almost died.  After a valve replacement and bypass surgery, she was recovering nicely when the wheels began to come off.

As the oldest son and a physician, my role evolved to make sure Mom’s medical needs were met.  I found myself  moving from a “visiting my parents” to a “making house calls” mentality.  I also became quite vigilant for patient safety issues in her care.  I saved her life three times from medication safety issues.  Twice when in the hospital, she was over-medicated with narcotics.  Neither situation required Narcan, but both required significant observation and dosage adjustments. The most dramatic intervention what when my father called me over to their home to evaluate Mom as she "just wasn’t right."  I watched her become unresponsive before my eyes and called 911.  Before the ambulance arrived I put together that she might have double dosed her insulin.  While a normal blood sugar is between 60 and 110, hers was 7.   She was having a hypoglycemic reaction and needed hospitalization.    

In the last year of her life, I spent a lot of time with my Dad just trying to keep Mom stable and in the home.  Dad was managing her diet, housework, medical regimen (now after the insulin episode), the farm…and burning out.  Mom was occasionally a little confused, and had also begun falling.  While she had never been graceful, but she just seemed to be “sliding down” through weakness now about twice a month.  When Dad was out one time, I came over and found Mom on the floor.  She was fully conscious and content, but unable to get up.  When I asked how long she’d been there, she replied about an hour.  She was just waiting for Dad to help.  I expressed to Dad my concern about his ability to care for her at home, and he basically said he would die before putting her in a nursing home.  So we went on.  Interestingly, her diabetic control was the best it had ever been, so I thought I was doing a good job.

On New Year’s Eve I got a call at 2 a.m. from Dad asking me to come over and check Mom.  After watching “Guy Lombado reruns”, they were heading to bed and Mom fell in the kitchen.  She hit her face on the floor, but more importantly, couldn’t move her right arm.  She had broken her humerus and was admitted to the hospital.  On the way home with my dad that morning, I noted that her care at home now exceeded his capability and he should consider a nursing home. 

The physician taking care of Mom in the hospital requested a “palliative medicine” consult.  Because this is usually reserved for patients at the end of their life, I didn’t really think this would do much good.  The next day, when my dad and I were called in for the results, we were strongly encouraged to consider hospice placement.  Though my mom didn’t have cancer, or some fatal debilitating disease, she had developed “failure to thrive” over the past 6 months…her body just wore out.  Her falling, increased weakness, confusion and decreased appetite were all signs of this…and I missed it.  The reason her diabetes was under such good control wasn’t that her medication regimen was finally good…it was that she had basically quit eating.  When we discussed this situation with Mom in the hospital, and she whole-heartedly agreed.

Mom was admitted to a hospice unit the next day and we had a wonderful two months.  As her arm healed though, her mind got weaker and she became increasingly disoriented.  She was happy, comfortable, all of her wishes were met, and her all of her children were near.  Most important, she and my Dad had a wonderful period to review their life together and to say good-bye.”

Trying to save her.

So within this image I painted Tom racing up a fire escape, as metaphor, to once again rescue his mother.  The windows have become the pills she is supposed to take.   We live within a world focused on rescue and in the case of fire that can be a great thing.  But within our lives it leads us believe there is always one more treatment, one more path of care, when eventually each of us must end.  We must appreciate ends as much as we do beginnings.  

And I would like to close with Tom’s words:

For me, there are really two points to this story:
1)     Medication safety is a huge issue.  Adverse drug events account for 38% of the improvement opportunity for the Partnership for Patients hospital acquired conditions. Just few classes of drugs account for about 75% of medication harm.  Work focused on blood thinners, management of blood sugar, and pain medication can eliminate a lot of unintended consequences for our patients.  It takes vigilance and teamwork as the family and care providers work together for the best results.  This communication is critical.  We need both sets of eyes to see reality.  Patient and families are part of the healthcare team…and must claim the statement “nothing about me without me”.
2)     As a society, we don’t do “end of life” transitions well.  Often the medical community considers dying a failure, and providers may vacillate between over delivery of care and total disengagement.  The patient’s true wishes may not really be considered, and the family is left starved for information and confused.  I found myself stuck between the roles of provider and family in this situation, and am embarrassed to note that hospice placement didn’t even occur to me…I was fixing her problems and missed her problem.  I wish someone had thought about end of life strategies sooner.  I wish I could rewrite the last 8 months of her story for the sake of both my mom and my dad.   

"Stair Steps" a jacket for Tom Evans


  1. Reading this the day after Mother's Day (and as a Mom myself), this family honored and loved their mother as best they could. Her long and happy life is a testament to their efforts. As for her quirky choices that sewed the seeds of her demise: it is unfortunate, but a part of humanity. I want a healthcare system that is responsive and can express regrets. This doctor will incorporate this experience into his practice and benefit others. It is a wonderful legacy for his mom, too, that her life and end of life may prompt alterations to our current cultural bias toward more medicine and intervention.

    1. Thanks Joleen! It can be hard to respect another's choices if we do not agree with them. That can be doubly hard if you are both doctor and son. I think Tom learned a great deal from his loving mother.

  2. Tom, thank you for your story. Honestly, as I began reading my feathers were ruffled. Another doctor chastising a diabetic, another doctor failing to differentiate between type 1 and 2. See I'm a type 1 with diabulimia so I hear the judgment about my non compliance without hearing my story.

    But then, I heard your love. Especially toward the end. Your realization of her whole story. You're fear at a low of 7 (so scary. I've been there.). Your tireless efforts not to fix her, but to make it better. That ultimately you were just glad to see her happy.

    I hope your mom will inspire you in all you do going forward. I'm sorry for your loss. I thank you for your tenacity and dedication.

    I hear more than medication management and end of life transition issues in this story. I hear issues of CARING. Issues of understanding. I hear a son with lots of love for his family. Love heals all.

  3. I am Tom's sister - and have always been so proud to be able to say that. I've watched him straddle the chasms between physician, son and brother a thousand times. His burden has been unique - and so heavy - but never, ever carried without compassion, love and occasional humor. Tom walked alongside each one of us - trying to help us understand what was happening.
    To this day, all nine of us feel guilty for not "seeing the signs" that could have possibly created a different outcome for our Mom. Nine children - nine perspectives - plus the overriding vote and consideration reserved for our Dad. I can only imagine the burden Tom carried.
    To my brother Tom - and all the other Dr. Sons, Daughters, Parents and Spouses - you did the very best you could - and we thank you. Maryfrances (4th from the right)

    1. Thank you Mary Francis. It was an honor to paint your family story. As a widow of a cancer victim I very much understand the guilt you feel. Thank you so much for sharing your perspective here.

      Your friend,

  4. it is ufortunate but a part of humainty. i want a healthcare system that is responcive and can express regrets.thank you so much for sharing.