Ashley Treatment
Encyclopedia
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.
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. The hospital later admitted that the surgery was illegal and should only have been performed after a court order, 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.
" 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.
In 2004 when Ashley was six and a half years old, she began to show signs of puberty
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.
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
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:
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:
, 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."
Three renowned bioethicists spoke in support of the treatment and discussed different aspects of it in opinion statements presented by Scientific America.
Disability rights advocates, including Not Dead Yet 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.
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".
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. 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
,
Peter Singer
,
Norm Fost, and
Doug Diekema.
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."
In Canada
, ethicist Arthur Schafer
's nationwide opinion piece defending the operation as justifiable considering Ashley's comfort engendered criticism from disability rights activists such as Dave Hingsburger of the York Central Hospital
and Keenan Wellar from the LiveWorkPlay
self-advocacy
organization. In a rebuttal, 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.
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.
Etiology
Etiology is the study of causation, or origination. The word is derived from the Greek , aitiologia, "giving a reason for" ....
; she is, and will remain, at an infant level mentally and physically. The treatment included growth attenuation
Growth attenuation
Growth attenuation is an elective medical treatment which involves administering estrogen to cause closure of the epiphyses of the bones , resulting in a reduced adult height. Since the 1960s this treatment has been performed primarily on children growing toward an adult height considered...
via estrogen therapy; hysterectomy
Hysterectomy
A hysterectomy is the surgical removal of the uterus, usually performed by a gynecologist. Hysterectomy may be total or partial...
, 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.
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
Bioethics
Bioethics is the study of controversial ethics brought about by advances in biology and medicine. Bioethicists are concerned with the ethical questions that arise in the relationships among life sciences, biotechnology, medicine, politics, law, and philosophy....
analysis in early 2007, both supportive and condemning. The hospital later admitted that the surgery was illegal and should only have been performed after a court order, 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.
Background
Ashley was born with a severe brain impairment of unknown cause, termed a "static encephalopathyEncephalopathy
Encephalopathy means disorder or disease of the brain. In modern usage, encephalopathy does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses.-Terminology:...
" 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
Andrea Bocelli
Andrea Bocelli, is an Italian tenor, multi-instrumentalist and classical crossover artist. Born with poor eyesight, he became blind at the age of twelve following a soccer accident....
. Her parents have nicknamed Ashley "Pillow Angel," because she always remains where she is placed, which is usually on a pillow.
In 2004 when Ashley was six and a half years old, she began to show signs of puberty
Puberty
Puberty is the process of physical changes by which a child's body matures into an adult body capable of reproduction, as initiated by hormonal signals from the brain to the gonads; the ovaries in a girl, the testes in a boy...
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
Precocious puberty
As a medical term, precocious puberty describes puberty occurring at an unusually early age. In most of these children, the process is normal in every respect except the unusually early age, and simply represents a variation of normal development. In a minority of children, the early development is...
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
Hysterectomy
A hysterectomy is the surgical removal of the uterus, usually performed by a gynecologist. Hysterectomy may be total or partial...
(to prevent menstruation
Menstruation
Menstruation is the shedding of the uterine lining . It occurs on a regular basis in sexually reproductive-age females of certain mammal species. This article focuses on human menstruation.-Overview:...
) and surgical removal of her nascent breast buds
Thelarche
Thelarche is the onset of secondary breast development, usually occurring at the beginning of puberty in girls. Its etymology is from Greek θηλή [tʰelḗ], “nipple” and ἀρχή [arkʰḗ], “beginning, onset”. Thelarche is usually noticed as a firm, tender lump directly under the centre of the nipple...
(to prevent development). She also underwent an appendectomy. The surgery was performed at Seattle's Children's Hospital and Regional Medical Center
Children's Hospital and Regional Medical Center (Seattle)
Seattle Children's, formerly Children's Hospital and Regional Medical Center, is a 250-bed children's hospital in the Laurelhurst neighborhood of Seattle, Washington. Currently ranked as one of the top 10 children's hospitals in the country by U.S...
. In addition, in December 2006 she completed estrogen therapy
Hormone therapy
Hormone therapy, or hormonal therapy is the use of hormones in medical treatment. Treatment with hormone antagonists may also referred to as hormonal 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
Archives of Pediatrics & Adolescent Medicine
The Archives of Pediatrics & Adolescent Medicine is a monthly peer-reviewed medical journal published by the American Medical Association. It publishes original clinical and basic research articles covering all aspects of pediatric primary care. The journal was established in 1911 as the American...
. In January 2007, her parents, who wish to remain anonymous, set up a blog
Blog
A blog is a type of website or part of a website supposed to be updated with new content from time to time. Blogs are usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video. Entries are commonly displayed in...
to explain their reasoning for their decision and to share their story with families of other children who might benefit.
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 cancerBreast cancer
Breast cancer is cancer originating from breast tissue, most commonly from the inner lining of milk ducts or the lobules that supply the ducts with milk. Cancers originating from ducts are known as ductal carcinomas; those originating from lobules are known as lobular carcinomas...
and fibrocystic growth (both of which have occurred in her family); to prevent pregnancy
Pregnancy
Pregnancy refers to the fertilization and development of one or more offspring, known as a fetus or embryo, in a woman's uterus. In a pregnancy, there can be multiple gestations, as in the case of twins or triplets...
; and to prevent appendicitis
Appendicitis
Appendicitis is a condition characterized by inflammation of the appendix. It is classified as a medical emergency and many cases require removal of the inflamed appendix, either by laparotomy or laparoscopy. Untreated, mortality is high, mainly because of the risk of rupture leading to...
, 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
Sexual abuse
Sexual abuse, also referred to as molestation, is the forcing of undesired sexual behavior by one person upon another. When that force is immediate, of short duration, or infrequent, it is called sexual assault. The offender is referred to as a sexual abuser or molester...
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.
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.
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.Reactions
In the United StatesUnited States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
, Arthur Caplan
Arthur Caplan
Arthur L. Caplan, Ph.D., is Emmanuel and Robert Hart Professor of Bioethics and director of the Center for Bioethics at the University of Pennsylvania. Prior to coming to Penn in 1994, Caplan taught at the University of Minnesota, the University of Pittsburgh, and Columbia University. He was the...
, of the University of Pennsylvania's Center for Bioethics
University of Pennsylvania School of Medicine
The Perelman School of Medicine , formerly the University of Pennsylvania School of Medicine, was founded in 1765, making it the oldest American medical school. As part of the University of Pennsylvania, it is located in the University City section of Philadelphia, Pennsylvania. It is widely...
, has criticized the Ashley Treatment in an MSNBC
MSNBC
MSNBC is a cable news channel based in the United States available in the US, Germany , South Africa, the Middle East and Canada...
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."
Three renowned bioethicists spoke in support of the treatment and discussed different aspects of it in opinion statements presented by Scientific America.
Disability rights advocates, including Not Dead Yet and Feminist Response in Disability Activism (FRIDA), called the treatment "invasive medical experimentation", "mutilation", "desexualization", and a violation of Ashley's human rights
Human rights
Human rights are "commonly understood as inalienable fundamental rights to which a person is inherently entitled simply because she or he is a human being." Human rights are thus conceived as universal and egalitarian . These rights may exist as natural rights or as legal rights, in both national...
. FRIDA called on the American Medical Association
American Medical Association
The American Medical Association , founded in 1847 and incorporated in 1897, is the largest association of medical doctors and medical students in the United States.-Scope and operations:...
to condemn the Ashley Treatment.
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".
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. 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
George Dvorsky
George P. Dvorsky is a transhumanist futurist, and author of the Sentient Developments blog. Dvorsky is a co-founder and president of the Toronto Transhumanist Association, and currently serves on the board of directors for Humanity+ and the Institute for Ethics and Emerging Technologies...
,
Peter Singer
Peter Singer
Peter Albert David Singer is an Australian philosopher who is the Ira W. DeCamp Professor of Bioethics at Princeton University and Laureate Professor at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne...
,
Norm Fost, and
Doug Diekema.
In the United Kingdom
United Kingdom
The United Kingdom of Great Britain and Northern IrelandIn the United Kingdom and Dependencies, other languages have been officially recognised as legitimate autochthonous languages under the European Charter for Regional or Minority Languages...
, the British Medical Association
British Medical Association
The British Medical Association is the professional association and registered trade union for doctors in the United Kingdom. The association does not regulate or certify doctors, a responsibility which lies with the General Medical Council. The association’s headquarters are located in BMA House,...
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
Great Ormond Street Hospital
Great Ormond Street Hospital for Children is a children's hospital located in London, United Kingdom...
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."
In Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
, ethicist Arthur Schafer
Arthur Schafer
Professor Arthur Schafer is a Canadian ethicist specializing in bioethics, philosophy of law, social philosophy and political philosophy. He is Director of the Centre for Professional and Applied Ethics, at the University of Manitoba....
's nationwide opinion piece defending the operation as justifiable considering Ashley's comfort engendered criticism from disability rights activists such as Dave Hingsburger of the York Central Hospital
York Central Hospital
York Central Hospital is a hospital in Richmond Hill, Ontario, Canada and one of three in York Regional Municipality.-History:York Central Hospital was founded in 1963 in Vaughan Township, close to the suburb of Richmond Hill, and incorporated into Richmond Hill following the amalgamation of the...
and Keenan Wellar from the LiveWorkPlay
LiveWorkPlay
LiveWorkPlay is a Canadian charitable organization for people with intellectual disabilities. Founded in Ottawa in 1995 by the husband and wife team of Keenan Wellar and Julie Kingstone, LiveWorkPlay was originally known as the Keen Learning Centre for Youth and then the Special Needs Network...
self-advocacy
Self-advocacy
Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own...
organization. In a rebuttal, 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
Utah Disability Law Center
The Utah Disability Law Center is a private non-profit organization based in Salt Lake City, Utah, USA. The DLC was founded in 1978 and provides self-advocacy assistance, legal services, and disability rights education....
criticized the hospital that performed this controversial procedure for violating Washington State law.
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.
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