How do we fight this my friend? How do we fight the ignorance that abounds in this f'd up world of ours? Will we ever be able to change the mindset of some, who see our children, who will always see our children, as damaged, unworthy,goods?
That's just ghastly. I mean, you have to believe that no doctor would ever want to make a decision like that... and yet you can see how something in the situation makes the position harden. I always read things like this hoping that there's "another side" that makes it seem less callous or heinous. I admit I'm hard pressed to figure out what that would be (unless the poster is lying, I suppose, but that post doesn't read like a lie in any way. It rings so sadly true.). Feh. Tweeting and such tomorrow. With luck, united voices can do more than one alone.
It's outrageous. Thanks for posting on FB. I think CHOP is going to get an earful and there's no way they'll get away with denying her this surgery. But even that doesn't make this go away.
That is awful!! Holy cow!! It makes me thank God my daughter with intellectual disabilities is medically healthy. But who knows what the future holds? What if she needs a transplant someday? This is terrifying and awful!! Can we write someone or sign a petition somewhere and register our anger?
I'm surprised this is even legal. What about ADA? Isn't there a legal guarantee that this girl, although disabled, is entitled to the same medical care as you or I?
I read and posted this yesterday on my FB...I don't think I have ever been more morally outraged in my life...it's 2012 and still some people (esp in medicine)believe that the lives of the severely disabled aren't worth living? Don't these doctor's take an oath?
As a pediatric RN one of my jobs in the past on my Pulmonology case load was assisting parents who's children needed lung transplants. I had one mom who was as strong advocate who's daughter had a congenital lung abnormality but was also diabetic and had seizures. Because of these two additional condition's she was turned down in center after center after center for a lung transpalnt.I helped mom navigate the system and I remember requesting permission for yet another center eval from the Medicaid nurse in our capitol who told me the mom was out of touch with reality and needed to just accept this and give up and refused to pay for another eval,By the time I got done with her she authorized the eval.I can remember being angry with her and asking her if she had any children and if she would give up if one of them needed a transplant? We found a center and then I worked my butt off to get them there. They wanted to take a family vacation on the way to Ohio along the Blue Ridge Parkway and needed stops with Durable Medical Equipment vendors along the way and little 02 tanks so she could wear them in a back pack and not be embarrassed....teenagers! It was one of my proudest accomplishments as a nurse in a very long career. And as a nurse with a very long career I can tell you this kind of crap happens all the time. We think we are so damned sophisticated and humane in the US but sweetie we are only a few steps ahead of Nazi Germany when it comes to humans who are not 100% "perfect." We will accommodate them for a season with some things but when extraordinary measures are needed such as transplants we see the flip side of our "humanity" emerge...the ugly side.Don't believe me? Look how we treat our elderly.
Archaic minds those Dr.s and ethics groups. How dare they not look at the whole picture but even that would not be enough. After I read it all through I felt sick...just sick and so very sad.
There can never be a price on the life of a loved one let alone a child...every. There should be no label either.
Wrong, wrong, wrong and my heart breaks for that family.
I could feel the heat and anger rising in my body as I read this. I think the family should create a petition on Change.org to examine the ethics process at this particular hospital. Back in the 1990s I served on the ethics committee of Oregon Health Sciences University and I know that they are sometimes out of touch with reality and operate in a vacuum. They need to have a reality check and the hospital PR folks need to get in there and make some noise.
I have been so troubled since I read this. I am formulating a post in my head, but it is very triggering. I have had a similar conversation (puctuated with "you didn't expect her to live forever did you?")
I've not yet been able to fully write about it. This mom is doing exactly the right thing by getting this out there.
A haunting aspect of this is the doctor's statement, "I was warned about you" - as if this is a punishment for the mom being a strong advocate.
And I do believe they do transplants on convicted felons. I'm not saying they shouldn't, but what about THAT quality of life.
That doctor was an insensitive asshole. I am so sorry on so many levels. I am sorry that someone who calls themselves a pediatrician sat across from a parent and said those words. By definition people should be drawn to pediatrics because they are wired with some extra empathy and patience, you know? That's a shame, the way that family was treated.
I am an internist for my day-job but my training is in both internal medicine and pediatrics. So no, I don't practice pediatrics but yes, like that guy, I am board-certified in pediatrics. And I know first hand that caring for children and their parents requires something else. To get it right, you must. How could this have happened? Could it be happening?
That is my doctor perspective. The mom in me cannot even imagine how this father and mother feel. I cannot get my mind around it or my lips around it to speak coherently. So, like doctors often do, I hide behind the doctor-perspective part because that's easier and it hurts less to imagine.
I am so sorry Amelia's mom and dad have to fight an added fight. As if it weren't enough already.
That doctor? Yeah. That doctor was an insensitive asshole. Fortunately there are others who aren't and I pray they find one of them soon.
"Surely what a man does when he is taken off his guard is the best evidence for what sort of man he is?
Surely what pops out before the man has time to put on a disguise is the truth?
If there are rats in the cellar, you are most likely to see them if you go in very suddenly. But the suddenness does not create the rats: it only prevents them from hiding.
In the same way, the suddenness of the provocation does not make me an ill-tempered man; it only shows what an ill-tempered man I am.
The rats are always there in the cellar, but if you go in shouting and noisily, they will have taken cover before you switch on the light." {C.S. Lewis}
And what a lot of rats there are on ethics committees...
Rats within rats.
If there is any justice, their actions will not bear the harsh light of day, and they'll drown in the backlash.
I...have no words. I just. OMG.
ReplyDeleteThank you so much for sharing this. I will pass their story on. The more exposure, the better, methinks.
GOOD LORD. I am seething...
I am shocked. In this country, at this time, I find it appalling. Shared in FB.
ReplyDeleteHow do we fight this my friend? How do we fight the ignorance that abounds in this f'd up world of ours? Will we ever be able to change the mindset of some, who see our children, who will always see our children, as damaged, unworthy,goods?
ReplyDeleteI read this, and I really wonder.
I foolishly thought we had made some sort of progress...I was seriously wrong. I shared on FB, I hope CHOP's PR team is ready for the rampage.
ReplyDeleteThat's just ghastly. I mean, you have to believe that no doctor would ever want to make a decision like that... and yet you can see how something in the situation makes the position harden. I always read things like this hoping that there's "another side" that makes it seem less callous or heinous. I admit I'm hard pressed to figure out what that would be (unless the poster is lying, I suppose, but that post doesn't read like a lie in any way. It rings so sadly true.). Feh. Tweeting and such tomorrow. With luck, united voices can do more than one alone.
ReplyDeleteIt's outrageous. Thanks for posting on FB. I think CHOP is going to get an earful and there's no way they'll get away with denying her this surgery. But even that doesn't make this go away.
ReplyDeleteThat is awful!! Holy cow!! It makes me thank God my daughter with intellectual disabilities is medically healthy. But who knows what the future holds? What if she needs a transplant someday? This is terrifying and awful!! Can we write someone or sign a petition somewhere and register our anger?
ReplyDeleteCarrie T.
I'm surprised this is even legal. What about ADA? Isn't there a legal guarantee that this girl, although disabled, is entitled to the same medical care as you or I?
ReplyDeleteI read and posted this yesterday on my FB...I don't think I have ever been more morally outraged in my life...it's 2012 and still some people (esp in medicine)believe that the lives of the severely disabled aren't worth living? Don't these doctor's take an oath?
ReplyDeleteCan a doctor really refuse to do a life saving surgery? Does the law really allow this?
ReplyDeleteI just...can't. Discuss it.
ReplyDeleteThere's no way I can know any answers.
As a pediatric RN one of my jobs in the past on my Pulmonology case load was assisting parents who's children needed lung transplants. I had one mom who was as strong advocate who's daughter had a congenital lung abnormality but was also diabetic and had seizures. Because of these two additional condition's she was turned down in center after center after center for a lung transpalnt.I helped mom navigate the system and I remember requesting permission for yet another center eval from the Medicaid nurse in our capitol who told me the mom was out of touch with reality and needed to just accept this and give up and refused to pay for another eval,By the time I got done with her she authorized the eval.I can remember being angry with her and asking her if she had any children and if she would give up if one of them needed a transplant? We found a center and then I worked my butt off to get them there. They wanted to take a family vacation on the way to Ohio along the Blue Ridge Parkway and needed stops with Durable Medical Equipment vendors along the way and little 02 tanks so she could wear them in a back pack and not be embarrassed....teenagers! It was one of my proudest accomplishments as a nurse in a very long career. And as a nurse with a very long career I can tell you this kind of crap happens all the time. We think we are so damned sophisticated and humane in the US but sweetie we are only a few steps ahead of Nazi Germany when it comes to humans who are not 100% "perfect." We will accommodate them for a season with some things but when extraordinary measures are needed such as transplants we see the flip side of our "humanity" emerge...the ugly side.Don't believe me? Look how we treat our elderly.
ReplyDeleteArchaic minds those Dr.s and ethics groups. How dare they not look at the whole picture but even that would not be enough. After I read it all through I felt sick...just sick and so very sad.
ReplyDeleteThere can never be a price on the life of a loved one let alone a child...every. There should be no label either.
Wrong, wrong, wrong and my heart breaks for that family.
I could feel the heat and anger rising in my body as I read this. I think the family should create a petition on Change.org to examine the ethics process at this particular hospital. Back in the 1990s I served on the ethics committee of Oregon Health Sciences University and I know that they are sometimes out of touch with reality and operate in a vacuum. They need to have a reality check and the hospital PR folks need to get in there and make some noise.
ReplyDeleteThank you so much for sharing this, Elizabeth.
I have been so troubled since I read this. I am formulating a post in my head, but it is very triggering. I have had a similar conversation (puctuated with "you didn't expect her to live forever did you?")
ReplyDeleteI've not yet been able to fully write about it. This mom is doing exactly the right thing by getting this out there.
A haunting aspect of this is the doctor's statement, "I was warned about you" - as if this is a punishment for the mom being a strong advocate.
And I do believe they do transplants on convicted felons. I'm not saying they shouldn't, but what about THAT quality of life.
That doctor was an insensitive asshole. I am so sorry on so many levels. I am sorry that someone who calls themselves a pediatrician sat across from a parent and said those words. By definition people should be drawn to pediatrics because they are wired with some extra empathy and patience, you know? That's a shame, the way that family was treated.
ReplyDeleteI am an internist for my day-job but my training is in both internal medicine and pediatrics. So no, I don't practice pediatrics but yes, like that guy, I am board-certified in pediatrics. And I know first hand that caring for children and their parents requires something else. To get it right, you must. How could this have happened? Could it be happening?
That is my doctor perspective. The mom in me cannot even imagine how this father and mother feel. I cannot get my mind around it or my lips around it to speak coherently. So, like doctors often do, I hide behind the doctor-perspective part because that's easier and it hurts less to imagine.
I am so sorry Amelia's mom and dad have to fight an added fight. As if it weren't enough already.
That doctor? Yeah. That doctor was an insensitive asshole. Fortunately there are others who aren't and I pray they find one of them soon.
Oh, "Ethics Committee," Doctor?
ReplyDelete"Surely what a man does when he is taken off his guard is the best evidence for what sort of man he is?
Surely what pops out before the man has time to put on a disguise is the truth?
If there are rats in the cellar, you are most likely to see them if you go in very suddenly. But the suddenness does not create the rats: it only prevents them from hiding.
In the same way, the suddenness of the provocation does not make me an ill-tempered man; it only shows what an ill-tempered man I am.
The rats are always there in the cellar, but if you go in shouting and noisily, they will have taken cover before you switch on the light." {C.S. Lewis}
And what a lot of rats there are on ethics committees...
Rats within rats.
If there is any justice, their actions will not bear the harsh light of day, and they'll drown in the backlash.
Cathy in Missouri
totally shocked.
ReplyDeleteThank you so much for sharing this. I will help spread the word.
ReplyDeleteWhat an absolutely perfect picture that is to go with this post.
ReplyDelete