There is a trend lately of Dawn posting a link to some article or blog on Facebook that ends up getting us both incensed enough to blog about it, with different slants. The other day, she shared this blog post from a mother of a little girl with developmental disabilities who happens to need a transplant. Go ahead and take a few minutes to read it before you keep reading what I have to say. Seriously. Read it first, otherwise my rant may not make sense.
Doctors take the Hippocratic Oath to swear that they will practice medicine ethically. The original oath is as follows:
I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement:
To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art, without charging a fee;
and that by my teaching, I will impart a knowledge of this art to my own sons, and to my teacher’s sons, and to disciples bound by an indenture and oath according to the medical laws, and no others.
I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.
I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.
But I will preserve the purity of my life and my arts.
I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art.
In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.
All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.
If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot. (Copied from Wikipedia)
I find it unconscionable that a doctor (and a social worker) would tell parents that their child is not eligible for a transplant because her developmental disabilities mean she does not have a quality of life.
I disagree. Her existence. Her living and breathing. The fact that she has been able to overcome hurdles in such a short life with developmental delays mean she has quality of life. It’s easy for those of us “normals” to say we have quality of life. It’s easy for us to do so many different things. Whereas, children and adults with any type of disability have to work harder to be able to do the things we take for granted.
I am a former social worker. I am an advocate. I spent over a decade working with children and youth, then adults with an array of disabilities. Most of them had severe emotional disabilities (SED). Many of them had developmental delays. Others, just had difficulty making good choices.
I took many teachers and school officials to task while advocating for my clients. I had to do the same with some other providers who were not doing their job and working in the best interest of the client. I did not allow teachers and school administrators bully parents into medicating their child simply because they wanted the child more manageable. More than one set of school staff heard my lecture on ADHD versus PTSD, as well as trauma reactions to stimuli.
I sat across from a vice principal and very professionally told him I would hold him personally accountable if my client was harmed because he allowed the bullying to continue. This was at a school for kids who were kicked out of regular schools for delinquent behavior. My client wasn’t delinquent, but he was aggressive, had little impulse control and was low functioning. He did not belong in that school but the school board did not give us any choice. He didn’t act out aggressively because he chose to and wanted to. He acted out because his brain was wired different from ours and he would revert to aggression when faced with stressors. Thankfully, he didn’t stay there long and thrived in another school.
One particular client that I use as example came to us with limited social skills, no impulse control and extremely aggressive. He also came to us with a prognosis from a former doctor that he (11 years old at the time) would never leave a psychiatric hospital or psychiatric residential treatment facility level of care (PRTF, one step down from a pysch hospital level of care). A doctor wrote this. The child was neglected and abused not only by his biological parents, but his adoptive ones, too. TWO sets of grown adults. It’s a wonder he was able to attach to anyone at all. Yet, it seems the doctor forgot this factor when it came to the child’s behavior and prognosis. Many people would have looked at that prognosis and either denied admittance to their program seeing no hope for progress or take him and treat him without caring what happened. The latter would likely result in an unsuccessful discharge to yet another placement.
A group of us would have none of that. We were horrified that a doctor would put that in writing about such a young child who could still be taught and could still make change. We treated him patient, care, understanding and love. He connected with many of us and formed lasting bonds. I remember arranging to be on his first outing off our campus after being with us for months. I got to watch Star Wars: The Phantom Menace with him in a theater. I remember celebrating him leaving our PRTF successfully and stepping down to our least restrictive level of care. We eventually saw him go to a foster home. A year later, we had him again. Not because of anything he did, but because his foster home pretty much fell apart. We worked with him again to get him into independent living. Independent. This for a young man who once had something written by a doctor that he would never leave highly restrictive levels of care. I went to his high school graduation and cried. He is now an adult living on his own and is in a long-term relationship. Yes, I have contact with him. After leaving our care he would call me at work now and then, mostly around holidays for some mothering.
While this young man was not facing a life or death situation requiring a transplant, his former doctor effectively said the same thing as the doctor at Children’s Hospital of Philadelphia (CHOP). He does not have quality of life. He will never have quality of life.
Who is either of those doctors to say what the child’s quality of life is? They forget the oath they took when they began practicing medicine. In the case of Amelia, the doctor and social worker felt that if the parents weren’t around anymore, Amelia wouldn’t or couldn’t take care of herself. I don’t know these two professionals, but I know parents of special needs children. Every single parent I worked with who truly understood the needs of their child planned for their child’s life in the event something should happen to them. I’m not saying every parent did this, but I worked with some very planful and involved parents who understood that their child’s functioning may allow them to be independent or not and with supervision or not.
I know there are criteria for transplants. I know that one of my high school classmates would still be on dialysis trying to raise his little daughter if he had been turned down. I know that what the doctor and social worker said to Amelia’s parents is discriminatory and perpetuates stigma. I know that life on dialysis for that little girl is not quality of life.
This is the twenty-first century and we still struggle to treat everyone equally. While we may joke on Facebook and Twitter about #firstworldproblems, this truly is a first world problem with Western medicine and closed-minds. Children and adults with special needs are not worth less than you or me. They are just like us, just wired different. I would take being in a roomful of people with special needs over being in a roomful of “normal” people who think they are better than the rest of us.
The actions of these professionals at CHOP is inexcusable and unacceptable. Help advocate for Amelia and her need for a transplant by signing the petition created by Sunday Stilwell.
If you’d like to read Dawn’s post you can go here.