References & Media Coverage
* Ashley Revisited: Growth Attenuation and Children with Severe Developmental Disability, Bioethics Symposium series at U. of Wisconsin, Doug Diekema, March 2015.
* In an article titled "Growth-Attenuation Therapy: Principles for Practice" published in Pediatrics magazine, June 2009, two pediatric endocrinologist and two bioethicists concluded as follows:
"Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for nonambulatory children with profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized."
* In an article titled: “Ashley Revisited: A Response to the Critics” published in the American Journal of Bioethics, January 2010, two bioethicists concluded as follows:
"Many individuals and groups have been critical of the decisions made by Ashley’s parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley’s treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley’s case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them."
* Ashley X Revisited: Fost and Lantos debate on the Bioethics Channel, January 21, 2010, audio recording.
* Sandy Walker (Jessica's mother) represented parents of Pillow Angels in the working group below. Here's her related interview with the local Fox news.
* A twenty-person working group on growth attenuation concluded with this report: "Navigating Growth Attenuation in Children with Profound Disabilities" published in December 2010, after more than two years of discussion.
"A twenty-person working group convened to discuss the ethical and policy considerations of the controversial intervention called 'growth attenuation,' and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise."
"The majority of our group reached this compromise position: growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree."
We thank CNN Health for their continued coverage of this story. Following are a few comments that we shared with them on their update article:
1. Children’s hospital maintained that the treatment is the right thing for Ashley. Furthermore, lawyers disagree about the legal issue; see the summary of our attorney’s findings in our update of May '07. It will be helpful to point this out for a more balanced representation of this side of the story.
2. Arthur Caplan seems to be a minority opinion among ethicists on this issue. There are many ethicists who spoke in support of the treatment in Ashley’s case, including: Norman Fost, Doug Diekema, George Dvorsky, Ben Willfond, Peter Singer, etc., whom we quote in this blog.
3. The article portrays a picture where Ashley’s parents seem to be the only ones in support of this treatment. In reality the treatment has broad support among doctors, ethicists, parents, and caregivers. The latter two categories have the direct experience and hence a unique insight. Even the sentiment of the general public is not represented in a balanced way; for example, consider the opinions posted by reader’s of the article itself.
Justice, & Humility: A Bioethicist Meets the 'Pillow Angel'
", a presentation at the Calvin College January Series by Dr. Doug Diekema ,
"when reasonable minds disagree, then the parents should decide",
"when reasonable minds disagree, then the parents should decide",January 18th, 2008.
* "Ethicist in Ashley case answers questions", A CNN Health interview with Dr. Doug Diekema, January 11th, 2007.
* "The Pillow Angel Case--Three Bioethicists Weigh In". Three renowned bioethicists spoke in support of the treatment in opinion statements presented by Scientific America, January 5th, 2007.
* Following is the conclusion from an article by Peter Singer, professor of bioethics at Princeton University, titled “A Convenient Truth”, published in the New York Times, January 26th 2007:
“What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. … Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.”
* “Pillow Angel Ethics”, Time Magazine, January 7th, 2007 – Includes comments by Seattle Children's Dr. Gunther and Dr. Diekema
* Excerpts from CNN Larry King Live, January 12th, 2007
DIEKEMA: … And so we brought this [the Ashley Treatment] to our full ethics
committee and had that conversation.
DR. NORMAN FOST, BIOETHICS, UNIVERSITY OF WISCONSIN: I'm amazed at the intensity and extent of the emotion about this, Larry. It strikes me this is an incredibly caring couple who wanted to do what was best with their child. They got a lots of consultation and thought about it very carefully. They used treatments that were not experimental, as people claim. Estrogen has been around for decades, using it to slow down growth has been done before, taking the uterus out of profoundly retarded children to reduce the fears associated with menstruation and reduce the risk of cancer. These are standard things of pretty low risk and they were people who claim that the parents for their convenience, obviously, have not read the father's Web site, which was remarkable. These are good parents that wanted ....
KING: Doctor, go ahead. I'm sorry.
FOST: These are good parents who want to care for their child as home as long as possible and have her have as many experiences as she can. If she's smaller and lighter, they can take her more places, she can have a richer life.
TADA: The challenge is what about the groundwork this is laying for the future eugenics against people with disabilities?
FOST: This claim of eugenics. Eugenics is about coercive government policy to sterilize people for fear that they would make more retarded children. That's not what's going on here. This is not state action. She did not have her uterus out because of fear of creating retarded children. It was done to help her, not society.
* Excerpts from CNN Nancy Grace, January 4th, 2007
Let`s go to the lines. Betty in Indiana. Hi, Betty.
GRACE: Betty in Indiana, stay with us. We`ll be right back.
Back to Betty in Indiana. Betty, you have a child with a similar condition.
* Excerpts from "The humbling true story of why this mother wants her disabled daughter to have her womb removed", October 12th 2007
Comparisons have been made between Katie and a nine-year-old American girl called Ashley X, who in 2004 had her womb and breasts removed and was given drugs to stunt her growth. Her parents argued that this would improve her comfort and that having a lighter, smaller body would make it easier to involve her in family activities.
"I have nothing but sympathy for that family and it is something we would definitely have considered for Katie, but it is too late for her to have the same treatment," says Alison.
I leave just as another exhausting, broken night looms.
Whatever the rights or wrongs of this case - and the moral debate will surely continue to rage - selfish is the very last word you could use to describe Alison Thorpe.
She simply wants the best for her daughter.
She simply wants the best for her daughter.
* Excerpts from "Show some compassion", January 4th 2007
The decision to suspend the growth of Ashley is not a slide towards eugenics but a solution that is right for her.
In the end we must all take a step back and recognise that Ashley is an individual with unique needs. And that surely is the crux of the matter. There is no one size fits all solution to the needs of families like this. It is right that the solution for Ashley was debated by doctors and by an ethics committee. It would be quite wrong if it were implemented on anything other than a case-by-case basis. Ashley's life is as different from Wheelchair Dancer's as it is from mine. She needs her own solution - worked out by the people who care for her and love her. If this intervention will ensure that she has a better life then it is the right thing to do. In the end that is the only standard that can be used. I wish them luck.