Is it medically and ethically appropriate to shorten and sterilize a six-year old girl to make it easier for her parents to properly care for her now and in the future? This is the question that confronted Seattle’s Children’s Hospital when the parents of a six-year old girl named Ashley approached the Ethics Committee requesting approval for various procedures that would improve the quality of life of their daughter. Ashley, called the “pillow angel” by her parents, suffers from a developmental brain condition known as static encephalopathy. “She had a normal birth, but failed to develop, mentally and physically, for reasons doctors could not ascertain. . . The diagnosis means that her brain has been damaged and the addition of the term ‘static’ means that her condition will not improve. She will remain for the rest of her life with the mind of a baby”1. Her profound developmental disabilities and her inability to ambulate, provide numerous challenges for her parents and caregivers. If her growth could be permanently arrested while she was still small in stature, then according to her parents the benefits would give Ashley a better quality of life and allow her parents to continue to care for her at home. The Ethics Committee recommended the procedure to keep Ashley small. High-dose estrogen treatments over the last two years “both inhibited growth and rapidly advanced maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment” 2. Ashley’s prospective height was reduced about 13 inches to 4 feet 5 inches. Ashley’s parents argue that “this makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.”3. However, besides the high-dose estrogen treatment, physicians removed Ashley’s uterus, to prevent potential discomfort from menstrual cramps and pregnancy in the event of rape, and removed her breast buds because of a family history of cancer and fibrocystic disease. Ashley also had an appendectomy for preventative reasons4. This treatment has now been named the “Ashley Treatment.”
The debate surrounding this treatment contrasts those who argue that the Ashley Treatment is for “creating a 21st century Frankenstein and for maiming a child for the sake of convenience” versus those who argue that this treatment is not only in the best interest of the child because it will provide a better quality of life but is also in the best interest of the parents and society as a whole1. Those advocating for the rights of the disabled see this treatment as potentially leading to the violation of human rights for the disabled. What can at first glance appear beneficial can in the long-run lead to harmful results. Disability-rights advocates argue that Ashley was not suffering and that the treatment was untested4. In an editorial regarding the Ashley Treatment in Archives of Pediatric & Adolescent Medicine, the authors question whether the Ashley Treatment is a “simple technical fix”5. Determining whether this treatment is in the best interest of the child is both a medical and ethical issue because substantive questions have arisen about this procedure. Are there uses of medical technology that are inconsistent with respect for the human person? If the Ashley Treatment becomes widely accepted, could this lead to the use of more controversial procedures that might reduce the size or reproductive capacity of other vulnerable people? If this treatment becomes a part of standard medical practice, could it affect insurance coverage and rates?6 These questions are important because other families are contemplating the same procedure for their children.
The issue of the Ashley Treatment has raised serious interdisciplinary concerns. There has been a call for a public debate on this issue that would examine all aspects of this treatment including the medical and ethical implications. Since the revelation of the Ashley Treatment, the public debate has ranged from support of her parents to accusations that this is a form of eugenics and even a violation of the basic human rights of the disabled. To determine if the Ashley Treatment is ethical, the principles of respect for persons, beneficence, nonmaleficence and justice will be applied to this treatment and its consequences.
Respect for Persons
This principle incorporates two ethical convictions: first, that persons should be treated as autonomous agents; and second, that persons with diminished autonomy are entitled to protection. The principle of respect for persons thus is divided into two separate moral requirements: the requirement to acknowledge autonomy and the requirement to protect those with diminished autonomy34. Respect for human persons refers to the right of a person to exercise self-determination and to be treated with dignity and respect. All people deserve autonomy and to be treated with dignity and respect. Failure to provide any person with adequate health care, regardless of their race, creed, color, national origin, sexual orientation, disability, etc., violates this basic right of respect for persons. Proponents of the Ashley Treatment, and in particular Ashley’s parents, argue that this treatment is in Ashley’s best interest because it will allow her to have a better quality of life and will assist them as caregivers in being able to give her the best possible care. Ashley is completely dependent on her parents for all aspects of her care which includes physical challenges such as lifting, turning, bathing, prevention of skin breakdown, exercises to preserve joint mobility, etc. Reducing Ashley’s size and weight not only reduces the demands and stress on the caregivers but also allows this child to be given the best possible care35. Ethicist Joel Frader argues that “our society generally provides insufficient support for persons with disabilities and those who devote time, effort, and resources to caring for the patient. A more generous society would make sure caregivers have assistance devices and other help necessary so that the physical, social, and emotional work of providing care does not become overwhelming”35. Since society does not always fulfill its duty in this area, the Ashley Treatment will assist both the disabled person and the enemy. The parents also argue that having Ashley be a size that is more appropriate to her developmental level makes her less of an anomaly to society and might assure her of the basic dignity and respect all persons deserve.
Opponents argue that forcing Ashley to be a permanent child, or what some refer to as “terminal infantilizing,” denies her the basic dignity and respect she deserves as a person. Does Ashley have the right to develop naturally? Do all people have the right to develop naturally? Bioethicist Arthur Caplan argues that “we should put greater focus on providing appropriately sized wheelchairs, and bathtubs and home-health assistance rather than on pharmacological remedies. This solution allows Ashley to be cared for without interfering with her natural developmental patterns. This reflects a moral tradition that dates back to Aristotle. It suggests that looking after Ashley’s best interest might involve more than just making her as comfortable as possible. We must also allow her to develop naturally”6. Some may argue that this decision is a personal decision that Ashley’s parents are making based on their right of autonomy that focuses on what is in the best interest of their child. Therefore, this is a private matter between the parents and the physicians at Seattle Children’s Hospital. This is true but it could also have far reaching public consequences. Those who are advocates for the rights of the disabled fear the slippery slope. Could this technology be used on other children with similar conditions—cerebral palsy, spina bifida and those with other serious brain injuries? Could we use other procedures to reduce the size and reproductive capacity of severely demented adult patients at risk of receiving sub-standard care because of his or her size or vulnerability6? Can medical technology have benefits but in the long-run diminish a person’s basic dignity and respect?
The removal of Ashley’s uterus raises real ethical concerns about sterilization. Directly sterilizing Ashley by removing her uterus because she does not need it can have wide-ranging consequences. The United States has a history of not always protecting the rights of the most vulnerable. “The eugenics movement of the first half of the 20th century, although now routinely castigated, was at the time championed by mainstream scholars and societal leaders across the political spectrum. Well-meaning eugenic advocates hoped to eliminate pain from disease and inequity in US society by allowing ‘defective’ infants to die, encouraging certain couples to marry, and discouraging others from parenthood. Because they believed that persons with mental retardation could not be trusted to understand the wisdom of eugenics, many states passed laws that led to the involuntary sterilization of adults with mental retardation. Upheld by the U. S. Supreme Court in their 1927 Buck v. Bell decision, such laws resulted in more than 60,000 individuals being sterilized. Although eugenics was viewed with mounting disdain after World War II, sterilizations of persons with mental retardation continued in the United States through the 1960s, and it was still routine practice in the 1970s to allow a child with Down syndrome to die of lack of surgical correction of duodenal atresia”5. We have mistreated vulnerable patients in the past—minorities, disabled persons, children, prisoners, etc. The most vulnerable have been denied their basic human rights by forced sterilizations, medical experimentation, and other eugenic experiments, etc. Those who advocate for the disabled believe we need a public debate on the Ashley Treatment because if safeguards are not put in place now, the consequences could be devastating for many vulnerable people both young and old in the future. Proponents for the Ashley Treatment argue that the slippery slope argument is a “red herring” because in the vast majority of cases, we have not descended down the feared slippery slope into moral degradation. When practices deviate too far from the norm, the public, when informed, will speak out6. This may be true, but until we have an open, honest and comprehensive debate on whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities, any further requests for this treatment should be denied. To treat the disabled with dignity and respect means society needs to provide the necessary resources to assist disabled children and their families. What has to be determined is whether the Ashley Treatment is just “a pharmacological solution for a social failure”36. If it is then this treatment violates the principle of respect for persons.
A basic tenet of the principle of respect for persons is that one may never be used as a means to an end or in a manner inconsistent with the person’s interests or wishes. It appears that there are still too many unknowns about this experimental treatment. Bioethicist Arthur Caplan argues that Ashley’s case “should be considered research, and be subject to the same ethical scrutiny as any other scientific study. But partly because no new drugs or procedures are being tested, the Seattle doctors have been afforded more latitude than they should have been”37. Proponents argue that Ashley’s breasts and uterus are not necessary organs because she will never utilize them. Because a person is unaware and will remain unaware does this mean they lose their inalienable rights? Opponents of this treatment argue that it was done to benefit the caregivers more than Ashley. Even if Ashley were larger there are other, less invasive and safer ways that would allow her mobility and family engagement. There are potential adverse effects with the high-dose estrogen treatments. “While there are data that high-dose estrogen treatment will make extremely tall-for-age (but otherwise normal) girls shorter as adults, this effect may be different in the population of children with severe disabilities. More needs to be known”5. In addition, the surgical procedures were non-therapeutic, and also have serious side-effects. Ashley’s uterus was removed to avoid the possibility of uterine and cervical cancer. Ashley’s appendix was removed for preventative measures. Could arguments be made to remove other additional organs to prevent future diseases? Where will we draw the line? To consent to this treatment with all the unknowns when Ashley is not suffering and the treatment is untested could be viewed as using her as a means to an end. The Ashley Treatment could also be looked upon as a medical experiment. Medical advances are necessary for society, and experimental surgeries and treatments are important tools to bring about these advances. But these advances can never be at the expense of denying individuals their basic dignity and respect.
Beneficence involves the obligation to prevent and remove harm and to promote the good of the person by minimizing the possible harms or risks and maximizing the potential benefits. Beneficence includes nonmaleficence, which prohibits the infliction of harm, injury, or death upon others. In medical ethics this principle has been closely associated with the maxim Primum non nocere: “Above all do no harm.” Proponents argue that the Ashley Treatment is in her best interest for a number of reasons. First, being a smaller child it will be easier for her caregivers to lift her and care for her general hygiene, which should reduce the risk of bedsores, pneumonia and bladder infection that plague patients like Ashley. Second, the removal of the uterus will eliminate any possibility of Ashley being traumatized by menstruation, will prevent pregnancy and prevent cervical cancer. Third, her breast buds were removed to avoid the discomfort of large breasts which are common in Ashley’s family and to prevent breast cancer. Fourth, the appendix was removed to prevent an appendicitis which occurs in 7% of the population and which would be difficult to diagnose in Ashley because she is unable to communicate the symptoms. Lastly, Ashley’s parents believe that without developing secondary sexual characteristics, their daughter will be less vulnerable to sexual abuse3. In the eyes of Ashley’s parents all of these procedures are increasing Ashley’s quality of life and therefore are in her best interest. Opponents argue that the treatment and surgery are nonbeneficial because Ashley is not suffering, the treatment is untested and has potential adverse effects, and the surgery is unnecessary because there are viable options. Physicians are ethically bound to do no harm to a patient. Ashley had a surgical procedure that involves pain and risks and was nontherapeutic. The risks of high-dose estrogen therapy include blood clots, deep vein thrombosis and it affects lipid metabolism. Finally, opponents argue that this treatment is setting a dangerous precedent for society as a whole, especially for the disabled. If the principle of beneficence promotes the good of the person by minimizing possible harms and maximizing possible benefits, then we must examine other viable options. First, there are appropriate resources that would allow a larger person to maintain mobility and family engagement. Caplan argues that “appropriately sized wheelchairs, and bathtubs and home-health assistance” can provide a good quality of life without pharmacological remedies6. Second, removing Ashley’s uterus “may cause her ovaries not to function normally as a result of a compromised supply of blood. This may result in Ashley’s ovaries not producing enough of the hormones that would otherwise protect her against serious common diseases such as heart disease and osteoporosis”26. Regarding menstruation, it would seem to be less traumatizing for Ashley and more reasonable to see if menstruation represented either a psychological or hygienic difficulty for her. If it did present problems then the physicians could respond medically to minimize the frequency and amount of bleeding, give pain killers for cramps or decide on a hysterectomy after puberty35. Third, Ashley’s risk of becoming pregnant is small, even if she is placed in an institution. It also appears that her risk of cervical cancer and even breast cancer are small. The risks resulting from the surgery and the high-dose estrogen treatments seem to outweigh the benefits. Fourth, the rationale for the appendix removal is that there is a 7% chance of appendicitis. This procedure may be preventative but the benefits seem minimal. Besides, could this not open the slippery slope to other procedures? Why not perform a tonsillectomy or a fundoplication or some other simple surgery that would also be preventative. What criteria do we use for determining if the surgery is beneficial? Finally, there is the potential for future abuses with other disabled or demented individuals. Ashley’s case may be extreme but it does set a medical precedent that could open up the slippery slope. Proponents for the treatment argue that every treatment has the possibility of abuse and if this is taken seriously we would stifle the practice of medicine and medical research. This is true but the track record in the United States for mistreatment of the most vulnerable in society is not good. What might stop parents petitioning an ethics committee to use growth attenuation therapy on a child with Down syndrome, or severe spina bifida? What might stop parents from requesting sterilization of their cognitively impaired child because it is in her best interests? Ashley’s treatment is being justified because she is profoundly developmentally delayed and is unlikely ever to go beyond the capacity of an infant mentality. The problem is that there are others who fit this category. Is this the future treatment of choice? Ashley’s case is centered on management options but it is not a stretch to imagine the debate moving to whether her quality of life is even worth preserving. All one has to do is look to the Netherlands and their Groningen Protocol to see in what direction some are moving in regards to the most vulnerable in society38.
No one will dispute that balancing benefits and burdens is difficult. Some will say that the benefits clearly out weigh the burdens with the Ashley Treatment. However, after reviewing the facts concerning the state of our knowledge regarding the treatment, the risks and potential adverse effects and the possible viable options available, it is clear that the Ashley Treatment does not minimize the risks incurred by this patient, but exposes her to unnecessary risks that have the potential for injury, harm, and even death. This is an experimental, non-lifesaving treatment with serious and even deadly unknowns. Arguably, this treatment not only fails the test of beneficence, but also fails the test of nonmaleficence.
Finally, justice recognizes that each person should be treated fairly and equitably, and be given his or her due. The principle of justice can be applied to this situation in three ways. First, questions of justice have been raised about whether Ashley and others with similar medical conditions who are severely cognitively impaired might be classified as vulnerable individuals and whether this type of experimental treatment is a form of exploitation. There is no doubt that Ashley and others with her condition are vulnerable individuals. They are incompetent and are at the mercy of their surrogate decision makers. Even though many argue that the treatment and surgery is in the best interest of Ashley, because her quality of life will be better in numerous ways, others will argue that in reality it is primarily in the best interest of the caregivers. There are viable options regarding treatment and care that will allow Ashley to be cared for without interfering with her natural developmental patterns. To perform this treatment and surgery on Ashley that is experimental and has potential risks and burdens when there are other viable options available that are less harmful can be viewed as a form of exploitation. It is unjust to place vulnerable individuals like Ashley in this position when other less invasive options give these individuals a comparable quality of life.
Second, on May 8, 2007, the Washington Protection and Advocacy System (WPAS), a private group vested with federal investigative authority for people with disabilities, released a report describing in detail how the request for Ashley’s intervention was evaluated.39 “The ethics committee had recommended that the family obtain a court review for the hysterectomy. The parents presented a letter from their lawyer arguing that, as a legal matter and according to case law in Washington, a court order was not necessary. The letter was accepted by the hospital, and the surgery proceeded.”40 The WPAS found that Seattle Children’s Hospital and Regional Medical Center violated the constitutional and common law rights of Ashley by performing a hysterectomy without a court order from the state. The law in Washington specifically prohibits the direct sterilization of minors with developmental disabilities without advocacy on their behalf and court approval. This violated Ashley’s right to be treated fairly and equitably. The hospital did agree to obtain a court order prior to any other medical interventions to attenuate growth in children with developmental disabilities.40
Third, the issue of justice pertains to the Ashley Treatment specifically in regards to distributive justice, which concerns the fair and equitable allocation of medical resources. The main issue here is research priorities. Should funds be used to support this experimental treatment when the risks seem unreasonable and possibly harmful? The amount of money spent on these surgeries and treatment could certainly be invested in new ways to help severely disabled children and their families live a better quality of life. This would help to minimize the risks and maximize the benefits, not only for the disabled person, but also for families and society as a whole. Also, if the Ashley Treatment becomes a part of standard medical practice, it could affect insurance coverage and rates. Since all Americans have an interest in access to affordable insurance, we should be very concerned about the relative value of this treatment as a matter of distributive justice. If this treatment is designed to prevent out-of-home placement, then one might think a cost-benefit analysis should be initiated to determine whether medication and surgery or more funds for home-based services would be more equitable and just5. In general, pharmacological remedies do not usually trump adequate social support. As a matter of social justice, “when the parents’ resources are limited, the state, with its greater resources, should not resort to biological modification, when the patient’s quality of life can be preserved through social services”26. Who should receive medical resources and whether the Ashley Treatment is a fair and equitable allocation of medical resources is an important ethical issue. Medical professionals have an ethical obligation to use available resources fairly and to distribute them fairly and equitably. Failure to do so violates the principle of justice.
1. Laurence J. and Jack L. Parents who froze girl in time defend their actions. The Independent [serial on the Internet]. 2007 Jan 5: [about 2 p.] Available from: http://news.independent.co.uk/world/americas/article2125403.ece
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34. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, U. S. Government Printing Office, Washington, D.C., 1979: B-1.
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36. Wikipedia contributors. Ashley treatment. Wikipedia, the Free Encyclopedia [database on the Internet] [cited 2007 Jan 21]. [about 2 pages]. Available from:http://en.wikipedia.org/wiki/Ashley_Treatment
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38. Verhagen E, Sauer P. The Groningen protocol. N Engl J Med. 2005 Mar 10:961:960-2.
39.Carlson D.R. & Dorfman, D.A. Investigative report regarding the “Ashley Treatment,” (Seattle, Wash.: Washington Protection and Advocacy System, 2007).
40. Wilfond, B. The Ashley Case: the public response and policy implications. Hastings Center Report 2007 September-October : 37: 12-13.