The Two Ends of Human Life

We recently were asked to see an elderly gentleman with advanced dementia who had a rash. The rash itself was unremarkable, but the interaction was sobering. Dementia patients range from the cheery, unaware types to the ornery, suspicious types. This gentleman was extremely anxious and during the entire interaction, his concern was that he would not be fed. He kept on pleading that we not forget to feed him, and that we not let him go hungry. While it was clear that he was well-taken care of with an outstanding nursing staff, it was heartbreaking that his mind remained in a place where he was in constant fear of not getting his next meal.
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Colleague had a patient with congenital erythropoietic porphyria. This is one of the types of porphyrias where children are exquisitely sensitive to the sun and develop extreme sunburns, blistering, and subsequent mutilation of sun-exposed areas (often face and hands).

Staring at some of the pictures of this disease makes one think twice about prenatal testing and genetic counseling. While this disease is usually not fatal, there are a number of other genetic diseases that do have a horrible prognosis for the affected child.

I used to think that I wouldn't get prenatal testing, because I'd be unable to go through with an abortion, but am no longer so sure. It's good to have principles to live by, but sometimes things aren't so black and white. Perhaps one can create more suffering by giving birth to a child with an early fatal disease...

PS - Have nothing against women who chose to have abortions - I firmly believe it is an individual's choice and respect their decision. Also, am just processing thoughts. Not meant to incite rabid comments from either extremes...

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