Ashley Treatment

Ashley X
Ashley in her wheelchair, 2006. Photo from her parents' blog.
Born	1997 Seattle Area
Other names	Pillow Angel
Occupation	N/A
Spouse	none
Children	none
Parents	unknown

The Ashley Treatment refers to a controversial set of medical procedures undergone by a Seattle child, "Ashley X". Ashley, born in 1997, has severe developmental disabilities due to static encephalopathy of unknown etiology; she is, and will remain, at an infant level mentally and physically. The treatment included growth attenuation via estrogen therapy; hysterectomy, bilateral breast bud removal, and appendectomy; see a one slide summary of Ashley's condition, the treatment and its benefits as prepared by her parents.^[1]

The principal purpose of the treatment was to improve Ashley's quality of life by limiting her growth in size, eliminating menstrual cramps and bleeding, and preventing discomfort from large breasts. The combination of the surgery and the estrogen therapy attracted much public comment and ethical analysis in early 2007, both supportive and condemning.^[2] The hospital later admitted that the surgery was illegal and should only have been performed after a court order,^[3] a position that is disagreed upon by the attorney of Ashley's family. Ashley's parents granted their first interview (in writing) to CNN Health in March 2008^[4].

Background

Ashley was born with a severe brain impairment of unknown cause, termed a "static encephalopathy" because it has not and will not improve. Although she sleeps and awakens, and breathes on her own, she is unable to raise her head, sit up, hold an object, walk, or talk, and must be tube-fed. Nonetheless, she is alert and responsive to her environment, particularly enjoying the music of Andrea Bocelli. Her parents have nicknamed Ashley "Pillow Angel," because she always remains where she is placed, which is usually on a pillow.^[5]

In 2004 when Ashley was six and a half years old, she began to show signs of puberty^[5] and her parents and doctors began to anticipate a variety of issues common in children with severe neurological impairments. As these children grow larger, it takes more strength to move them and provide basic bodily care, raising the risk of pressure sores from immobility. Precocious puberty is common in children with various forms of severe brain damage. The early appearance of secondary sexual characteristics is often distressing to parents and caretakers. Many parents of severely disabled children explore possible ways to avoid having to deal with menstruation and fertility in a diapered child. A variety of treatments have been used over the last several decades to deal with these issues.

In July 2004, Ashley had a hysterectomy (to prevent menstruation) and surgical removal of her nascent breast buds (to prevent development). She also underwent an appendectomy. The surgery was performed at Seattle's Children's Hospital and Regional Medical Center. In addition, in December 2006 she completed estrogen therapy through dermal patches, which sped up the natural closure of her growth plates.

Ashley's story first broke in October 2006, in the Archives of Pediatrics & Adolescent Medicine. In January 2007, her parents, who wish to remain anonymous, set up a blog to explain their reasoning for their decision and to share their story with families of other children who might benefit.^[5]

Arguments for the treatment

The parents state that they sought such treatment for the best interests of their daughter, namely, to enable them to personally continue constant care for her at home; to maximize her inclusion in family activities; to avoid the cramps and discomfort associated with menstruation; and to avoid the discomfort from large breasts (which runs in Ashley's family) while lying down or strapped in the chest area while in her wheelchair. Furthermore, they cited additional side benefits: to reduce the risk of bedsores; to prevent breast cancer and fibrocystic growth (both of which have occurred in her family); to prevent pregnancy; and to prevent appendicitis, which occurs in 5% of the population and which would be difficult to diagnose in Ashley as she would be unable to communicate the symptoms. They also believe that without secondary sexual characteristics, Ashley will be less vulnerable to sexual abuse^[5] by future caregivers when her parents will no longer be able to care for her.

In an article published in June 2009 on Growth Attenuation, 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.^[6]

The two bioethicists from the previous article also published an article in January 2010 cataloging and countering the criticisms that targeted the Ashley Treatment, and concluded as follows:

The purpose of this paper is to provide a brief review of the [Ashley Treatment] 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.^[7]

Results

After a year, Ashley's parents consider her treatment a success: She will never suffer from menstrual discomfort and cramps, she will always be flat chested and avoid breast related discomfort and other issues, and with her growth plates closed, she has reached her adult height of 53 inches and weight of 63 pounds (in metric, 135cm and 29kg) , an estimated reduction of her potential height and weight of 20% and 40%, respectively.^[8]

Reactions

In the United States, Arthur Caplan, of the University of Pennsylvania's Center for Bioethics, has criticized the Ashley Treatment in an MSNBC editorial, arguing that it is "a pharmacological solution for a social failure--the fact that American society does not do what it should to help severely disabled children and their families."^[9] Three renowned bioethicists spoke in support of the treatment and discussed different aspects of it in opinion statements presented by Scientific America.^[10]

Disability rights advocates, including Not Dead Yet^[11] and Feminist Response in Disability Activism (FRIDA), called the treatment "invasive medical experimentation", "mutilation", "desexualization", and a violation of Ashley's human rights. FRIDA called on the American Medical Association to condemn the Ashley Treatment. ^[12] The Disability Rights Education and Defense Fund (DREDF) declared, "... we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct". ^[13]

Ashley's parents reported that 95% of the 5,000 emails they received were in support of the treatment, many of these testimonies and support emails are posted on Ashley's blog^[5]. The parents indicated that there was especially strong support among parents and caregivers of children with similar conditions to Ashley's, those who have the direct experience. They cite several ethicists in support of the treatment, including: George Dvorsky^[14], Peter Singer^[15], Norm Fost^[16], and Doug Diekema^[17].

In the United Kingdom, the British Medical Association stated, "If a similar case occurred in the UK, we believe it would go to court and whatever decision was ruled would be in the best interests of the child." Dr. Peter Hindmarsh, Professor of Paediatric Endocrinology at Great Ormond Street Hospital was troubled by the treatment decision being taken by a hospital ethics committee. "'I am not sure the ethics committee was the right place to decide,' he said, adding that it was not clear who represented the child's interests when it went before the committee." ^[18]

In Canada, ethicist Arthur Schafer's nationwide opinion piece^[19] defending the operation as justifiable considering Ashley's comfort engendered criticism from disability rights activists such as Dave Hingsburger^[20] of the York Central Hospital and Keenan Wellar from the LiveWorkPlay self-advocacy organization. In a rebuttal,^[21] Wellar attacked the notion that Ashley's limited mental abilities justified the decisions made on her behalf: "Infants have human rights even though they can't speak for themselves. Why should Ashley have received any less consideration?"

On May 8, 2007, an investigative report done by The Disability Rights of Washington (formerly The Washington Protection and Advocacy System) in conjunction with The Utah Disability Law Center criticized the hospital that performed this controversial procedure for violating Washington State law.^[22]

The pediatric endocrinologist who wrote the original paper (Dr. Daniel F. Gunther) committed suicide on September 30, 2007, reportedly for reasons unrelated to his involvement with Ashley's treatment.^{[23] [24]}

References

1. ^ "A slide summary of the "Ashley Treatment"". http://pillowangel.org/AT-Summary.pdf. Retrieved 2008-05-06. 
2. ^ Gunther, DF; Diekema, DS (2006). "Attenuating growth in children with profound developmental disability: a new approach to an old dilemma". Archives of pediatrics & adolescent medicine 160 (10): 1013–7. doi:10.1001/archpedi.160.10.1013. PMID 17018459. 
3. ^ Disability Studies at the University of Idaho: The "Ashley Treatment" is ruled illegal
4. ^ "'Pillow angel' parents answer CNN's questions". CNN. 2008-03-12. http://www.cnn.com/2008/HEALTH/conditions/03/12/pillow.QA/index.html. 
5. ^ ^{a b c d e} "The "Ashley Treatment"". http://www.pillowangel.org/. Retrieved 2007-01-11. 
6. ^ Allen, David (2009-06). "Growth-Attenuation Therapy: Principles for Practice". PEDIATRICS. http://pediatrics.aappublications.org/cgi/content/full/123/6/1556. 
7. ^ Diekema, Douglas (2010-01). "Ashley Revisited: A Response to the Critics". The American Journal of Bioethics. http://bioethics.net/journal/j_articles.php?aid=2118. 
8. ^ Burkholder, Amy Disabled girl's parents defend growth-stunting treatment, CNN, retrieved 2008-03-12
9. ^ Caplan, Arthur (2007-01-05). "Is ‘Peter Pan’ treatment a moral choice?". MSNBC. http://www.msnbc.msn.com/id/16472931/. Retrieved 2007-01-08. 
10. ^ Mims, Christopher (2007-01-05). "The Pillow Angel Case--Three Bioethicists Weigh In". Scientific America. http://www.scientificamerican.com/article.cfm?id=the-pillow-angel-case--th. Retrieved 2007-01-05. 
11. ^ "Not Dead Yet statement on "growth attenuation" experimentation". Not Dead Yet. 2006-01-06. http://www.notdeadyet.org/docs//Growth_AttenuationPR0107.html. Retrieved 2007-01-29. 
12. ^ Smock, Amber (2007-01-10). "Feminist Response in Disability Activism (FRIDA) to lead “Ashley treatment action” at the American Medical Association Headquarters". FRIDA blog. FRIDA. http://fridanow.blogspot.com/2007/01/for-immediate-release-january-10-2007.html. Retrieved 2007-01-29. 
13. ^ "Modify the System, Not the Person". DREDF. 2007-01-07. http://dredf.org/news/ashley.shtml. 
14. ^ Dvorsky, George (2006-11-06). "Helping families care for the helpless". IEET. http://ieet.org/index.php/IEET/more/809/. 
15. ^ Singer, Peter (2007-01-26). "A Convenient Truth". OP-ED. New York Times. http://www.nytimes.com/2007/01/26/opinion/26singer.html?_r=1&th&emc=th. 
16. ^ Fost, Norm (2007-01-12). "CNN LARRY KING LIVE on the Ashley Treatment". CNN. http://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html. 
17. ^ Diekema, Doug (2007-01-11). "Ethicist in Ashley case answers questions". CNN. http://www.cnn.com/2007/HEALTH/01/11/ashley.ethicist/index.html. 
18. ^ "A genuine moral dilemma, say doctors". The Daily Telegraph. 2007-01-05. http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/01/05/wash105.xml. Retrieved 2007-01-08. 
19. ^ Schafer, Arthur (2007-01-14). "Shortening Ashley: Was radical surgery to control young girl's growth justified?". Winnipeg Free Press. http://www.winnipegfreepress.com/historic/32071499.html. Retrieved 2007-01-29. 
20. ^ Hingsburger, Dave (2007-01-13). "Ashley's treatment". Chewing the Fat. http://davehingsburger.blogspot.com/2007/01/ashleys-treatment.html. Retrieved 2007-01-29. 
21. ^ Wellar, Keenan (2007-01-24). "Disabled girl has rights, too" (PDF). Ottawa Citizen. http://www.liveworkplay.ca/OLDSITE/MED/cit-ashley-jan-24-07.pdf. Retrieved 2007-01-29. 
22. ^ Carlson, David R.; Dorfman, Deborah A. (2007-05-08). "Investigative Report Regarding the "Ashley Treatment"". Washington Protection and Advocacy System (a/k/a Disability Rights Washington). http://www.disabilityrightswa.org/news-1/Investigative%20Report%20Regarding%20the%20Ashley%20Treatment.pdf. Retrieved 2007-05-08. ^{[dead link]}
23. ^ Alexander, Brian (2007-10-11). "Doctor involved in controversial care of girl kills self". Seattle Times. http://seattletimes.nwsource.com/html/localnews/2003940574_webgunther10m.html. Retrieved 2007-10-11. 
24. ^ Stratakis C: Dan F. Gunther (1958-2007): Dedicated Pediatric Endocrinologist, Astute Clinician and Exceptional Person. Journal of Pediatric Endocrinology & Metabolism 20:11 1157-1159 2007

External links

• "Investigative Report Regarding the Ashley Treatment" by the Washington Protection and Advocacy System
• "The Ashley Treatment: an Ethical Analysis" from The Internet Journal of Law, Healthcare and Ethics
• The original medical paper by Drs Gunther and Diekema from Arch Ped Adolesc Med that described the treatment and led to the media publicity.
• Ashley's Parents' Blog
• A Disability Community's Response to Ashley's Treatment
• Time magazine article "Pillow Angel Ethics" part 1part 2
• USA Today article:Surgery on girl raises ethical questions
• MSNBC: Surgery to stunt girl’s growth sparks debate
• Not Dead Yet Statement on "Growth Attenuation" Experimentation
• MSNBC: Should severely disabled kids be kept small?
• SCOPE—UK charity that campaigns for children's rights
• Love, Justice, & Humility: A Bioethicist Meets the 'Pillow Angel', by Douglas Diekema presentation at the Calvin College January Series on January 18, 2008