A Medical Dilemma

I have a vague memory of when I was almost four. Not many memories, just that one day. A day when I was trying to understand what my older sisters were so excited about. There’s going to be another one of us—what did they mean?

“That’s why Mom has been gone all day,” one of them said, being older and wiser, they knew things I didn’t. ”She’s at the hospital getting a new baby!” (that’s how the facts of life were explained in my family)

A baby? That surprised me. I had one brother and three sisters and it never dawned on me that would change.

Everyone was excited and talked at once.

“They’ll be home tonight.”
“It’s a girl!”
“What’s her name?”
“Mom hasn’t quite decided yet—either Thelma, Laura or Rosene.”

My memory of that day ends there. I don’t remember Mom and the baby coming home, just remember the excitement when we found out we had a baby sister.

That baby sister became a woman who taught me many things over the years. Rosene was the name chosen for her and it suited her perfectly. Her smile was as bright as a rose, even when life was hard.

She like her name and she liked roses. She was impressed with the fact that roses bloomed and were fragrant, even if life gave them thorns and her goal was to do the same.

Her motto was “Bloom where you are planted.” 

And she did.

During Rosene’s first year, my parents and doctors discovered that she would have physical challenges from a lack of muscle coordination over her whole body caused by Cerebral Palsy.

I’ve written more about Rosene on my old blog… the struggles she faced and the joys she experienced. In October 2008 my family and I processed the information the doctors gave us after complications from her Cerebral Palsy and from a surgery done that week rendered her health so compromised she would probably need life support to continue living.

As a family, we made the tough decision to not proceed with more medical intervention, but to say good-bye. The family sat by her bed singing hymns as she passed away.

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Between Rosene’s story and my own brush with death, twenty surgeries and living with pain and a deformed leg, I have a high respect for anyone hoping for a medical procedure to save or improve life and I also have high respect for everyone in the medical field. So the situation happening at a premier hospital in Philadelphia breaks my heart.

Last week, the mother of Amelia, a three-year old child with Wolf-Hirschhorn Syndrome  blogged about a consultation at Children’s Hospital of Philadelphia (CHOP) where a medical team told the parents they won’t do a kidney transplant for Amelia because of the health issues and disabilities the child already has.  She writes that the transplant team sited Amelia’s severe disabilities along with the complications of the required anti-rejection meds she would need to take the rest of her life.

The blog quickly went viral and one reader (who doesn’t know the family, but was touched by the story) started a petition for others to sign requesting that CHOP do the kidney transplant for Amelia.

CHOP has released a statement saying,

“We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability … but we are unable to comment publicly on individual cases.”

A professor of medical ethics was quoted in an ABC NEWS story as saying, “CHOP’s statement suggested their decision was not based solely on Amelia’s disability but in compliance with with current norms.”

I’m not debating the value of Amelia’s life… that’s not even a question, every life has value. But I can see the various sides of this story… the challenges a person with disabilities faces, the stress it can put on a family, the desire to help a child, the doctor’s cautious approach, the desire for an organ transplant to provide the best benefit for both the donor and the receiver, the outrage of others and more.

I question whether doctors/hospitals are required to preform any type of surgery on every patient that requests it, even if they question the long-term benefits of the surgery. Since we have the means of keeping people alive via an array of medical procedures like never before, I can only imagine how hard it must be for doctors/hospitals to determine what procedure to do to who.

According to a CBS NEWS piece, the United Network for Organ Sharing says… “it’s up to the individual hospitals and their doctors to determine if someone is an appropriate candidate for transplantation.”

So why can’t the doctors and medical experts at CHOP decide what risks to take and what risks not to take? 

Though Rosene had severe physical disabilities, she did have full mental capacity, so prior to her surgery she had told us that she did not want to be on life support long-term… so that helped us make our decision.

Due to her disabilities, Amelia is not capable of voicing any opinions concerning her medical treatment. If Amelia could tell us what she thinks… I wonder if she would want the surgery. She lives with various health challenges and has already been through numerous medical treatments including heart surgery.

Due to Amelia’s age, her parents are the ones responsible for decisions made about her health. I’m sure Amelia brings them joy and I assume their hearts also break at seeing the challenges she lives with.

The family has ever right to pursue ever medical avenue they want to, but do they have the right to insist that a certain doctor and/or hospital preform the surgery?

It’s not easy, but it is reality… and I keep coming back to what is best for Amelia. Just because someone smiles does not mean they are not in pain.

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UPDATE: A medical ethics teacher sent me a link to an article with interesting thoughts about putting ourselves or our loved ones through all types of medical treatments that may or may not give us/them a better life… How Doctors Die.