Guardianship Nightmare

When I think back to my genetics class in high school, there is one disease process that still haunts me – Huntington’s Chorea;  A debilitating and progressive genetic disease that strikes in your mid 30’s – and usually causes death in 15 years.  The problem is that most people have had children  by the time they get symptoms- and have inadvertently passed the disease on to their kids.  Kids have a 50/50 chance of getting it. 

I am taking care of my first Huntington’s patient. She is 55 and at the end stages.  Her eyes are gray and empty, probably blind. She cannot talk, but occasionally a guttural sound escapes her lips.  She is twisted and bent with muscle contractures.  She has the hallmark character trait of Huntington’s, the chorea movements- which look like continuous writhing of her arms and neck. I am not sure if she is aware any longer, there’s no way to know if she hears us or has thoughts.

She came to us because the feeding tube that sits in her stomach came out at her nursing home. We were charged to replace it. We were also told when she arrived that she was a full code.  This simply means we are to be aggressive in keeping her alive – if she stops breathing we must put her on a respirator to keep her alive.  This didn’t make much sense to me, why would her family choose to prolong this woman’s suffering by keeping her alive on machines if the time came?  Why wouldn’t they just allow her to pass naturally from her disease? 

I soon discovered it wasn’t her family’s decision. The family, once learning their mother had this disease, and watching her slowly degenerate just took off.  It was too hard to watch. There was probably some anger from the kids – knowing they had a 50/50 chance of getting this. Fear as well, realizing what they witnessed could soon be them.  Regardless, no one could find any family. Certified letters, telephone calls, all went unanswered.  So, the court took guardianship.  The court now is calling the shots – which means the court will do anything to prolong her “life”, even artificially, even if she lays there writhing, hooked to a machine for years.

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