1/16/2012

The Decisions of Life and Death



I wonder...the doctor who told Amelia's parents he wouldn't recommend a transplant for their daughter based on her cognitive disability--does he love an animal? Would he do everything he could for a beloved pet, spare no expense?

Amelia's story has been in my thoughts all weekend, as it has for so many in the community: the heartache, the fear, the outrage that her parents and family must be feeling. The very real frustration that CHOP can't talk about this case, can't do anything but offer platitudes and reassurances that they're committed to offering the best care, has to be something that many of us are feeling. Yes, privacy laws are important, but sometimes it feels like companies and organizations are more concerned about covering their asses legally than in being honest.

All of this swirls through my head, makes me sick to my stomach, but so does the fact that once again, our Frankie has the UTI issues again. Will we have to put him down? How many vet bills the size of car payments do we make before we acknowledge that we can't do this anymore?

Here I struggle with the weight of the decision of life and death for my pet, and I wonder what Amelia's doctor felt when he met with her parents and said:

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” 

Did his stomach drop? Did he feel regret? Did he imagine what it would be like to hear those words? Did he look at the sleeping child across from him and feel anything? Did he?

Will he, given the outpouring from the community, change his recommendation when the ethics committee meets? Will he see Amelia as a child worth saving? Will he learn not to equate cognitive disability with a lack of quality of life? How do you write off a two year old?

The reality is we won't know those answers. We'll be left wondering. Hopefully, Amelia's parents will get some kind of answer soon, and we'll get updated, but like most stories in our community, we'll never know the full story.

Our society has never valued the infirm, the mentally disabled, the different. Never. We have a horrendous history full of the inhumane treatment of the most vulnerable members of our society. Abuse, restraint, horrible acts occur each and every day. In state hospitals and institutions, the mentally handicapped are denied appropriate medical care based on a doctor's position that their quality of life makes the care not worth it. People are allowed to die who could otherwise be saved, and it happens every single day.

And yet, we love our pets, spend 41 billion dollars a year on them. Even now, my stomach is twisted in knots because we don't seem to be able to permanently knock out the urinary tract infection in our Frankie. As long as he's on the antibiotics, he does okay, but within days of stopping them, it reoccurs. We didn't rush him to the vet today, though, because we can't afford another car payment of a vet bill. Instead we called and asked for more antibiotics, which Rick is out getting. And I am sitting here with thoughts of life and death and dollar signs swirling in my mind while I think of a little girl whose value and worth is priceless, incalculable, and whose parents must be going through hell right now.

Value.
Worth.
Quality of life.

We need to value our most vulnerable. We need to  feel that we are held in a sacred trust to offer the best of care, the most tender of feelings to those who cannot care for themselves, who need help. We need to imbue in our care for them our highest ideals.


Matthew 25:33-40

33 He will put the sheep on his right and the goats on his left.

34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’

40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

3 comments:

AutismWonderland said...

This story just makes me so upset. Thank you for sharing. This needs to be heard. This family. This little girl deserves a chance.

Phil Dzialo said...

The disability community has finally overcome many divisions and is now a powerful force to be dealt with...our lives and our kids lives are "worth living" as is all life. We will win this one for Amelia.
Sadly, though, despite the loving value of our pets, many people value them more highly than their fellow man. You are right...

Barbara said...

This Bible verse has meaning for me:
1 Corinthians 1:26-28

http://www.therextras.com/therextras/faith-in-my-professions.html