Two Kinds of Suffering

Today was an odd day.

My first appointment of the day with my doctor was cancelled, as I drove up to his office.  On my way home I received a call from the University of Utah saying Shelbie's third iron infusion was cancelled for today as well.  I was a little perplexed by that.  Apparently, the hospital here, called down there and reported the reaction Shelbie had last week that landed her back in the hospital.  Whatever exchange of information took place then, was enough to cancel the works.

I went through most of the day feeling irritated but I couldn't figure out why, so I just sat and stewed in my thoughts for quite some time.   Then it dawned on me, I was apprehensive about doing these in the first place, but the powers that be convinced me that it was absolutely necessary in order for Shelbie to get some quality of life back.  We don't have one single good experience with infusions and that girl.  Her body over-reacts in dangerous ways.  So, I think I was bugged that complete strangers could call and because they were peers in the medical arena, their opinion held more than mine, as her caregiver.

With all these cancelled appointments, I had the whole day to stay at my computer and draw and get a little caught up on work.  While I worked, I listened to a series of TED MED talks on Caregiving, Compassion and Empathy.  My favorite speaker was Dr. Thomas Lee out of Harvard.  He described two kinds of suffering.

1.  Unavoidable suffering- The kind of suffering that comes from disease, treatments, side effects, and pain.

2.  Avoidable suffering- This has nothing to do with the disease process but everything to do with anxiety in delays of treatments, anxiety in waiting for results, the chaos from teams of doctors who don't communicate, lack of co ordination in care...

This is absolutely what I've been trying to find words to describe.  It's not necessarily the doctors I don't like, it's chaos they stir up, the miscommunication.  It's the fact that I never get to speak to our doctors unless I make an appointment and drive 4 hours.  Emails are intercepted by a medical assistant who makes the call if it should be forwarded to the doctor or not.

The medical assistant who called today to cancel the infusions said, "You can just make sure she eats a diet high in iron."  Are you kidding me?  That's the answer now?  When two months ago, there was no other way than infusions because of her severe malabsorption problems.  Then she proceeded to tell me I could discuss concerns in three months when we are scheduled to see the Specialist's Fellow...who won't even be the same Fellow we saw two months ago and won't be the same one we will see in a year from now.  So, it feels like a waste of energy and resources and a loss in continuity of care.   Avoidable suffering.

It's the modern healthcare system in this country that creates suffering.  Shelbie is 100% worse than when we started down this road two weeks ago.  I wish I knew how to fix this with our team because I genuinely love each one of them and I think we have the smartest men and women I've known but this is not working for me.

I will leave this post with a quote from Dr. Lee- Patients want peace of mind that things are as good as they can be. 


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