So let me get this straight...
If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?
BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?
Got it.
(Wolf-Hirschhorn syndrome is caused by a partial chromosomal deletion--just like my son's (unnamed) diagnosis, only it involves chromosome 4 instead of chromosome 7. Chromosomal anomalies can cause a whole array of anatomical and physiological differences that would complicate a surgery, or make it riskier, and I'd certainly expect those particular complications and risks to be explained to me in the planning stages of a surgery. But that's not why Amelia is being disqualified, according to her mother's story.)
Barriers Bridges and Books has a compilation of links about this story. Stephen Drake is also on the case.
Showing posts with label ethics. Show all posts
Showing posts with label ethics. Show all posts
Monday, January 16, 2012
Sunday, September 09, 2007
Yes, it can happen. It does happen.
If you've seen stories like Ruben Navarro's, and thought, "thank goodness, that can't happen to me or my loved ones, because we have each other, some of us have medical training, we know our rights, we've made legal provisions..." --whatever you thought protected you and yours from being fatally mistreated in a hospital setting, read today's investigative report in the LA Times about the death of Linda Sue Brown. Lies were told, consent forms were forged, care was withheld, surgery (a hysterectomy) was performed on a disabled woman without appropriate consent and possibly without clear medical necessity. And nobody has been held accountable under the law.
Two of her sisters were once nurses at the hospital where Linda Sue Brown died. One of them has recently persuaded the state medical board to reopen a closed investigation of the circumstances surrounding Brown's death.
It can happen, and it does happen. A stronger system to protect and enforce disabled patients' rights is crucial in medical settings, because all the informal measures (a loving and informed family, nonbinding guidelines and suggested protocols, basic human decency) aren't always enough. And when those rights are violated, there have to be real consequences.
Two of her sisters were once nurses at the hospital where Linda Sue Brown died. One of them has recently persuaded the state medical board to reopen a closed investigation of the circumstances surrounding Brown's death.
It can happen, and it does happen. A stronger system to protect and enforce disabled patients' rights is crucial in medical settings, because all the informal measures (a loving and informed family, nonbinding guidelines and suggested protocols, basic human decency) aren't always enough. And when those rights are violated, there have to be real consequences.
Friday, January 12, 2007
Ashley Treatment continued ...
Dear blog posters (whether I agree with you or not!)
You will want to check out “Paula Zahn Now” tonight. They will be featuring a discussion of the “Ashley Treatment,” including another family that supports Ashley’s parents. Source: http://benandbenniewaddell.blogspot.com
Interested in your thoughts. I may not be able to blog mine until Sunday. MD
PS: Thanks for the contributing medical student who suggested read the original medical journal article on the procedure. I am tracking it down, but in the meantime you may to read the views of the author Dr. Douglas Diekema, recently interviewed by CNN. He headed the ethics panel that evaluated the parents' request back in 2004.
You will want to check out “Paula Zahn Now” tonight. They will be featuring a discussion of the “Ashley Treatment,” including another family that supports Ashley’s parents. Source: http://benandbenniewaddell.blogspot.com
Interested in your thoughts. I may not be able to blog mine until Sunday. MD
PS: Thanks for the contributing medical student who suggested read the original medical journal article on the procedure. I am tracking it down, but in the meantime you may to read the views of the author Dr. Douglas Diekema, recently interviewed by CNN. He headed the ethics panel that evaluated the parents' request back in 2004.
Friday, January 05, 2007
Sigh.
I didn't want to post about this story.
I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."
Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.
And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.
And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.
Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.
UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.
I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."
Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.
And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.
And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.
Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.
UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.
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