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Disability

What, you mean that doesn’t look like a comfy sleeping position?

Disability is relative and not a  good determinant for value.

Our family recently found ourselves in need of a new dog to be a companion to the hyper one we already had.  With our family’s make up of various medical conditions, we got excited when J saw pets with disabilities.  When we  realized they were close to it, J started combing through their dogs looking for an ideal match.  We all piled in the van and headed off to meet a one-eyed dog in need of a home.  However, the one-eyed dog was intimidated by our loud and crazy 4 kids and hyper dog.  It wasn’t going to work…but thankfully the lady who runs the place thought of another of their dogs who might match.

Ziggy had his back legs/hip hurt when he was younger, but he is such a bundle of happiness.  He loves everything and everyone.  He trots after our hyper dog or plays stationary defense when he gets tired.  He lets our two-year old lead him around.  The biggest “disability” he seems to suffer is an inability to jump.  When I talked about him to my coworker, she said, “That’s a disability? I wish my dog had that disability.”  I figure his making the most of life without being able to do something other dogs take for granted just means he belongs with us.

Last week, I had a conversation with my son about MS in my life.

O: “Do you ever wished you didn’t have MS?”

Me: “I used to wish that I didn’t have MS, but over time I have come to accept it as just a part of the hand I was dealt.  I realized getting angry about the head aches, lack of dexterity, poor memory, etc. was not really helping me.  In fact the more I focused on it, the worse I felt.  In truth, I think I hit the lottery when it comes to the hand I have been dealt to live.  I grew up with parents who cared about me.  I’ve always had enough to eat and opportunity to learn.  Now I have a beautiful wife, four kids, a good home and some dogs to keep us company.”

O: “The headaches and stuff suck though.  I wish you didn’t have it.”

Me: “At this point I think wishing things like that is about as useful as wishing I had been born with the talent to be an NFL star making millions of dollars.  Wishing to be other than I am seems to belittle so much of what I am and can do.  I am probably not going to gain fame from my singing unless you can figure out how to make me famous for how poorly I sing and dance.  My bet is you will not grow to be the tallest man in a generation.  I think there are still a ton of things you can do with your life.  Should I waste time wishing you were a giant or just appreciate you for the smart, athletic and empathetic kid that you are?”

O: “I guess that makes sense.  It’s your whole thankful for what we have bit again isn’t it?”

Me: “Yup.  Our family all came together bonded by our ability to live with medical conditions.  I can not wish too hard for us never to have had our conditions.  Without them, we might never have met, much less become a family.”

 

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Value of Life and the Infinte Doctor

Grandpa, dad and I walked hand in hand.
Grandpa, dad and I walked hand in hand.

As I have thought about the subject a lot lately, I keep coming back to what seems like a conclusion.  We all wonder how to value life, and most of us swear we have an answer.  As a patient, a father of special needs children, and a patient advocate my conclusion seems simple compared to the many theological based answers I run across.

I think the value of life is determined solely by the desire one has to live it.  I came to this conclusion thinking about what Dr. Weis whom I met with the American Board of Internal Medicine, wrote about two ways to perform the role of a doctor.  The first is as if every visit has a finite interaction duration with a predefined beginning and end.  If the doctor comes into the room, diagnoses the patient and goes about ordering/performing/giving the care which has the highest likelihood of prolonging life, then the doctor has performed the best care possible.  This is measurable/finite doctoring (sort of, if we can agree on the most effective care possible).  The doctor came in, diagnosed the condition necessitating the visit, and treated it.  That is the end of the doctor’s role in a finite model.  I note this is the current model most of our insurance uses to pay for treatments.

The second way to perform the role of a doctor is to look at the patient as a whole.  What do they want to do, and how is their condition preventing this?  Will solving the nominal cause of the visit allow the patient to resume their life as they desire?  What is it that drives them and keeps them going?  What is the patient’s answer to life’s most important question, “For what or whom do you live?” If the doctor can allow them that part of their life which they value, should not that be the goal?  Notice however in this model, the role of the doctor doesn’t end when the patient is treated for the reason they came into the visit.  In this model, the role of the doctor continues for as long as the patient values some part of their existence.  This is the infinite doctor’s role, for it has no defined end point at the time the doctor sees the patient.  It ends with a lack of desire or ability to experience what the patient values in his or her life.

As I have interacted with patients, I find many who have experiences like mine where they overcome expectations because they have something which they value in their lives.  I see patients who spend their time helping others, and the desire to do so gives them fortitude beyond what should be expected.  I see kids who want desperately to play with their family, and that gives them strength to push on long after they should have needed to stop.  If we take the time to know what we or the patients really want out of this life, I suspect we may go down very different roads than the road of trying to preserve life for as long as possible.

I note treatment under these two models can have some profoundly different outcomes.  Now think about under which model of a doctor’s role you want to be cared?

This came to a head for me last month.  My dad had been in the surgical intensive care unit for months.  It became clear he was never going to be able to get back to the parts of life he loved.  He wasn’t going to be able to go out boating and drinking with friends at the marina.  He wasn’t even likely to be able to go read a book by the water for a long time, even if things went optimally.  Yet through infection after infection and surgery after surgery he held on.  Why?  I strongly suspect he persevered because he never wanted to leave my step-mom alone.  He loved her the way we all hope to be loved.

Still, on a Friday after months in the hospital she told him it was OK to let go, and what he wanted became clear before she even left the building.  If life’s most important question is “For what do you live?” clearly his love and concern for her was his answer.  He tore off the oxygen before she even got to her car.  They put it back on him, but through the weekend it became clear he was done.  He died on the Monday after family said our good byes and stopped all medication save those comforting him.  He valued knowing his wife was OK enough to endure whatever came his way, and when reassured she was, his decision was life was not worth the discomfort. He was lucky enough to be treated at a  hospital where the ultimate goals of maintaining and preserving life meant more than a heartbeat.

I don’t doubt for a second the entire team of medical professionals at the University of Maryland Medical Center worked to preserve a chance for him and our family to return to a life with meaning.  What’s more, when that chance passed, they respected the wishes of our family to let him go and not insist on medical treatment unlikely to add value to his or our lives.  For them, I am thankful.

For my dad, we will all miss your self deprecating humor. With your passing, we will miss thousands of smiles, Hawaiian shirt sightings, deep conversations and opportunities to enjoy great food and drink. May you forever travel happy knowing you are loved.

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