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    The Decisions of Life and Death
    By Kim Wombles | January 16th 2012 12:57 PM | 8 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

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    The decisions of life and death are not easy to make, whether it's about a loved one on life support or the need to spare a beloved pet suffering. As one family struggles with the harsh words of an insensitive doctor, our family is dealing with the economic realities of chronic health issues in a pet. In no way are the two situations comparable, and yet, the fact is that many people spend more time thinking about their pets than about the disabled and how society treats and cares for them.




    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.’
     



    Update: We put Frankie to sleep January 25th after his condition worsened. He will be very much missed.




    Goodbye, science cat. 

    Comments

    Gerhard Adam
    Kim

    While I fully understand your point, I would like to point out that this goes right back into that difficult area and it isn't easier when we impose some emotional elements.  In particular, we should be clear that no one is disputing helping people when it comes to care and available resources.  However, it also needs to be understood that it becomes much more difficult when we don't have unlimited resources available and then priorities will have to be set, and people will get angry.
    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.

    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.
    This is where we begin to run into a problem.  I fully agree with what the little girl's parents are going through, but it is playing emotional blackmail (1) to claim that she is "priceless".  In truth, if the need were there, I would always prioritize my own children and family above those of another.   In the same manner as your cat is valuable, it is you that attaches that value.  My value will be towards my dogs or cats. 

    There is always an argument of where someone's child, or parent, or relative, or friend is "valuable" and we want society [and technology] to spare no effort or expense in saving them.  However, this isn't possible.  So, while I certainly have no handy solutions, it is this that I keep returning to as a necessary conversation our society needs to engage in.

    (1)  I don't mean to imply that you're engaging in some kind of manipulation, but rather pointing out that we cannot attach such an adjective to someone and be genuine about it, since we already carry our own sense of "valuable" individuals with us.  So, to suggest that one might disagree with this assessment, is used [in our society] to make people feel guilty for suggesting that someone might not be as important as someone else.  If we're truthful, then we would acknowledge that no one is more important to us than the people in our own lives. 
    kwombles
    As a hospice volunteer who both visits patients and provides bereavement follow-up, I am not for preserving life at all costs. I believe that providing patients and families with support to allow for a good death is extremely important. But I also believe, regardless of our tendency to value our own above all others, that human life is priceless. It is a mistake to presume that I mean priceless as a call to spend all money regardless of prognosis and diagnosis.
    There are reasons to deny transplants, but cognitive disability alone should not be one of them, and that is the reason the parents say the doctor was not recommending the transplant. Not because of her disorder, Wolf-Hirschhorn Syndrome, not because of a shortened life span prognosis, not because of additional health complications caused by the syndrome.

    We do not live in an ideal society, but that's no reason to not call for more compassion and respect of all people, regardless of their functional levels. I don't think my point could be clearer than I already stated: 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.


    That doesn't mean throwing money away recklessly, but it also doesn't mean we should engage in zero-sum games, either. No, we don't have unlimited resources, but we currently also do a spectacularly poor job of managing and allocating those resources we do have.

    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Gerhard Adam
    Very well put.  Part of the reason, why I'm being somewhat contrary here, is that I read some of the responses that people have had to this situation with CHOP and I was really "put off" to see the tone moving in the direction of "having a right to a kidney". 

    While I think your point is well made and you're very reasonable, my concern is that too many people aren't.  How long before someone is going to suggest contacting your legislators to get another law passed?  We've already seen the extremes to which this can run by watching the Terri Schiavo debacle. 

    Perhaps I'm being overly cynical, but most people participating in such a discussion aren't nearly as reasonable nor informed as you are.

    kwombles
    Some of the comments on the two stories at Huffington Post are definitely disappointing, and it is from both sides--it's hard to keep facts straight, and people are demonstrating their tendency to jump to conclusions without actually reading the original post from the mother.
    http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html 
    http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html 
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    About a "right to a kidney", family members were willing to give their own. That's love. CHOP did not want to perform the surgery, from my understanding. That seems wrong.

    Regardless of the outcome, good has come already. Handicapped children are not considered a bother to those who love them. They are life worthy of life. This world strives for perfection, when in truth it is hungry for meaning that is only found in brokenness. Hell, we are all broken. It ain't always pretty. But that messy love for handicapped kids was put on stage front and center, and hopefully it will make the hard-hearted think.

    I wish your kitty didn't have to suffer. We had to put a dog to sleep once..

    Carry on...:)

    Rose

    kwombles
    Thanks, Rose.
    We put Frankie to sleep Wednesday afternoon.
    http://kwomblescountering.blogspot.com/2012/01/what-i-didnt-want.html


    Amelia's story may have a good result.
    http://us4.campaign-archive1.com/?u=e5c154ae84117c31d09f67720&id=b4fa994a94 


    "Hello wolfhirschhorn.org followers:
    Over the course of the last week, there have been new updates on the situation with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took place between a number of the key leaders of CHOP, the Rivera's and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the "Brick Walls" posting. The meeting lasted a little over 90 minutes and the Rivera's had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week. 
    Mia and the Rivera's are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her on-going medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.
    To keep up to date on details of this story, LIKE us on Facebook (https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter (@wolf_hirschhorn).
    Thanks!" 
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    I read where Frankie was put to sleep. How good you were able to tell him goodbye!

    We only have Marie, but still we have plans...we will bury her in the yard and plant a tree...maybe a dogwood...(I'm sorry, my twisted mind just went there.) Really, a beautiful magnolia might better show the circle of life and death, and I'm speaking in a natural way, where everything returns to the earth.

    Pets really enrich our lives, make them saner by their simplicity. Frankie was gorgeous, from the pictures. He sounded so sick, and would never get any better.... it was unselfish of you to let him go.

    Sad for you and the kids.

    kwombles
    Thank you, Rose. We're still missing him fiercely. He was gorgeous inside and out. We brought home two nine month old orange tabby brothers Saturday, naming them Jack O'Neill and Daniel Jackson at Rosie's insistence. They're sweet brothers and have given us reason to smile. :)
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.