History is ripe with examples of
mistreatment of the disabled population, from institutionalization and
involuntary sterilizations to the withholding of standard medical treatments
(Krais, 1989). In recent years,
disability rights activists have worked tirelessly to ensure that the rights of
the disabled community, which include the same fundamental constitutional
rights afforded to all citizens, remain protected. The Ashley Treatment is a series of medical
and surgical procedures that were used in an alleged attempt to attenuate the
growth, reduce physical discomforts and improve the overall quality of life of
a six-year-old girl named Ashley X with profound cognitive and developmental
disabilities (Anonymous, 2007). From a
medical standpoint, the combination of interventions, while they may have the potential to improve
quality of life, has historically never been used on an individual with
Ashley’s disability. Furthermore, this
highly experimental and irreversible treatment is associated with a range of
potentially grave side effects (Gunther & Diekema, 2006). From an ethical perspective, the Ashley Treatment
neglects the principles of autonomy, beneficence, nonmaleficence, and justice
(Clark & Vasta, 2007). Likewise the
Ashley Treatment fails the test of legality and abandons the constitutionally
protected rights that all citizens possess regardless of disability (Carlson
& Dorfman, 2007). This type of
practice demonstrates regression in efforts to conquer inequalities that
trouble vulnerable individuals like Ashley.
When closely scrutinized, the issue seems to stem from a lack of
societal support and empathy for disabled individuals and their families
(DREDF, 2007).
Introduction
The
Ethics Committee of Seattle’s Children’s Hospital faced a difficult task when
approached by the parents and physicians of six-year-old Ashley X, a girl with
severe cognitive and developmental disabilities. Ashley suffers from a condition known as
static encephalopathy of idiopathic origin which, according to medical
projections, renders her permanently endowed with the mind of a
three-month-old. At the age of six,
Ashley began to exhibit signs of early puberty.
While her cognitive state remained fixed, her physical stature continued
to mature. Ashley’s parents confronted
the Ethics Committee with requests to permanently halt their daughter’s
physical growth using high-dose estrogen therapy, and to reduce potential
discomforts through a hysterectomy, bilateral breast bud removal, and an
appendectomy. All of these
interventions, they contended, would serve Ashley’s best interests in
maximizing her quality of life and allowing her to remain in her home
environment under the care of her parents.
After hearing the appeals of Ashley’s parents and physicians, the Ethics
Committee came to a general consensus of approval, and what became known as the
Ashley Treatment was accomplished (Anonymous, 2007). The institution of this treatment elicited a
spectrum of public responses ranging from support to sheer outrage. Supporters claim that the Ashley Treatment
was carried out for the sake of Ashley’s best interests while opponents argue
that the series of risky, untested procedures serves to convenience Ashley’s
parents, and was unwarranted because Ashley was not suffering and the concerns
raised were merely speculative (Liao, Savulescu, & Sheehan, 2007). This
paper aims to describe the medical, ethical, and legal issues surrounding the
Ashley Treatment in order to establish an opinion on the proposed series of
treatments, and to provide direction for similar cases that may present in the
future.
Case Study: The Story of Ashley X
After an
unremarkable birth, the parents of Ashley X noticed that their daughter’s
cognitive and motor skills were not developing as they would in the average
child. Physicians representing different
specialties performed a gamut of tests on Ashley to secure a diagnosis. Despite their efforts, however, physicians
could not unearth the cause of Ashley’s condition, and thus assigned a
diagnosis of “static encephalopathy of unknown etiology” (Anonymous, 2007,
Ashley’s Story section, ¶1), referring to a state of permanent, unchanging
brain damage. By three months of age,
Ashley reached a plateau in her cognitive and physical abilities; however her
physical maturation continued to progress normally. Throughout the years, Ashley has remained
completely dependent on her caregivers for simple tasks such as changing
positions, grasping objects, bathing, and feeding. Her parents, who wish to remain anonymous,
coined the term “Pillow Angel” to describe their daughter and others with
similar disabilities. Ashley exhibits an
environmental awareness, responding to stimuli with vocalizations and movement
of her extremities. Though she rarely
makes eye contact with others, her parents insist that Ashley recognizes the
family as she often reacts to their presence with outward indicators such as
smiling and a calmed disposition. Ashley
resides at home with her parents and two healthy siblings and attends a school
designed for children with special needs.
According to Ashley’s parents, she is given the utmost in care and
attention, and Ashley instills a reciprocal sense of love, connectedness, and
inspiration within the family unit (Anonymous, 2007).
In 2004, at
the age of six and a half years, Ashley had evidenced no progression of
development, barring physical maturation, and physicians projected no future
advancement in Ashley’s cognitive or physical abilities. At this time, Ashley began exhibiting signs
of precocious puberty. Her concerned
parents met with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in
Endocrinology at Seattle’s Children’s Hospital, to discuss options to achieve
their primary stated goal, “the improvement of Ashley’s quality of life”
(Anonymous, 2007, Summary section, ¶9). The meeting culminated in the
development of a novel approach to Ashley’s condition. This unprecedented approach, which included
high-dose estrogen therapy, hysterectomy, removal of the breast buds, and an
appendectomy, became known as the Ashley Treatment. The rationale for using high-dose estrogen
therapy was to attenuate Ashley’s growth, resulting in drastic and permanent
reduction in height and weight. Doing
so, according to her parents would allow Ashley to continue being cared for in
the home environment and to be included regularly in family outings and
activities. An overall reduction in
size, they contested, would allow Ashley to be moved more frequently, promoting
better circulation, gastrointestinal functioning, improved joint mobility, and
an overall decreased risk for infection.
Ashley’s parents justified removing the uterus to avoid the discomforts
that women often experience with the menstrual cycle. They also described the secondary benefits of
hysterectomy as avoiding pregnancy in the case of rape, and avoiding the
possibility of uterine cancer in the future.
Similarly, to avoid the discomforts associated with large breasts,
Ashley’s breast buds were removed. Given
a genetic predisposition to large breasts and a family history of fibrocystic
growth and breast cancer, Ashley’s parents deemed this an effective solution to
potential complications. Additionally, the removal of the breast buds, they
claimed, would decrease Ashley’s chance of being seen as a sexual target to
caregivers or other predators. The final
component of the Ashley Treatment involved surgical removal of the appendix
through a relatively common procedure known as an appendectomy. Ashley’s parents rationalized this procedure
based on a statistic estimating a five percent risk of developing
appendicitis. Fearing that Ashley would
not be able to communicate the presence of pain associated with appendicitis,
Ashley’s parents requested an appendectomy as the procedure itself was seen as
posing no additional risk if performed in conjunction with the other surgeries
(Anonymous, 2007).
In July
2004, the surgical elements of the Ashley Treatment were carried out, followed
by two and a half years of high dose estrogen treatment that ended in December
2006. At four feet, five inches tall and
63 pounds, the growth plates of ten-year-old Ashley are permanently closed, and
she will never experience life in an adult-sized body (Burkholder, 2008). To
this day, no unfavorable consequences have been reported; however the Ashley
Treatment has ignited a passionate debate among medical practitioners,
ethicists, legal professionals, disability rights activists, and lay people
alike. The following section will
highlight significant medical implications associated with the specific
components of the Ashley Treatment.
Medical Implications
In order to
establish an ethical opinion regarding the Ashley Treatment, we must first
explore the medical and surgical components and their associated risks and
benefits. The premise behind
administering high-dose estrogen was to accelerate the process of epiphyseal
growth plate closure. At normal
physiologic levels, estrogen is the hormone primarily responsible for promoting
closure of the growth plates. When
administered in high doses, however, estrogen results in just the opposite
effect, inhibiting growth by stimulating premature and permanent closure of the
growth plates (Gunther & Diekema, 2006).
Over the years, the amount of estrogen contained in oral contraceptives
has decreased by 80% in response to evidence that high levels of estrogen are
linked with myocardial infarction, thromboembolic disorders, and stroke. Estrogen doses have been decreased from
original doses as high as 150µg daily to the lowest dose currently available-
20µg daily (Olds, London,
Ladewig, & Davidson, 2004). Ashley’s
treatment regimen consisted of an astonishing 400µg of transdermal estradiol
daily (Gunther & Diekema, 2006).
Perhaps the most significant risk of high-dose estrogen therapy for
Ashley is the development of deep vein thrombosis. Venous thrombosis occurs when blood pools in
the superficial or deep veins, usually in the legs. A very serious and life-threatening
complication of thrombi formation is pulmonary embolism, a condition where the
clot formed in the deep veins mobilizes and travels up to the pulmonary artery,
impeding blood flow to one or both of the lungs. Inactive or non-ambulating individuals like
Ashley are at an even greater risk for developing thromboembolic disease (Olds
et al, 2004). As Clark and Vasta (2007)
point out, Ashley’s sedentary lifestyle, combined with the use of
supraphysiologic estrogen doses, should raise many red flags in considering
this therapy for someone in that condition.
Additional risks associated with high-dose estrogen therapy include
uterine bleeding, breast and endometrial cancer, increased cholesterol levels
and subsequent complications such as gallstone formation (Clark & Vasta,
2007).
Removal of
the breast buds and hysterectomy exempt Ashley from experiencing some of the
major adverse side effects of high-dose estrogen therapy, although Ashley’s
parents maintain that avoidance of these side effects was not the primary
goal. Rather, avoidance of future
discomfort related to the menstrual cycle and large breasts backed their logic (Anonymous,
2007). With 650,000 reported procedures
each year, hysterectomy remains the most common non-pregnancy related operation
among women in the United
States.
A hysterectomy, or removal of the uterus, can be performed vaginally,
laparoscopically, or abdominally through an incision across the abdomen. For Ashley, the operation was done
abdominally in order for surgeons to visualize and remove the appendix
simultaneously. Disadvantages to this
method include more scarring, postoperative pain, slower recovery, and
potential issues with bowel function (Olds et al, 2004). Because Ashley’s ovaries were not removed,
her body will maintain natural hormone secretion. Removal of the ovaries has been associated
with increased risk for cardiovascular disease, osteoporosis, and bone
fractures. Although Ashley will retain
her ovaries, their ability to function properly may be compromised due to
improper revascularization following hysterectomy (Liao et al., 2007). Far less invasive techniques of suppressing menstruation
exist. Albanese and Hopper (2007)
outline some of these options which include continuous use of oral
contraceptive pills, GnRH analogues such as triptorelin or leuprorelin,
intrauterine systems, and intramuscular injections of DMPA (Depo-Provera) every
three months. While these medical alternatives come with their own set of
potential side effects which can include decreased bone mineral density,
breakthrough bleeding, and thromboembolism, the risk of permanent sterility is
not a concern. A surgical alternative to
hysterectomy is endometrial ablation which offers no contraceptive effects and
does carry a small risk of permanent sterility (Albanese & Hopper,
2007). An appendectomy was performed
concurrently to eliminate the possibility of appendicitis in the future. Universally, appendicitis occurs in about
seven to twelve percent of the population with peak incidence occurring in
individuals between the ages of eleven and nineteen. Males in this age group are more commonly
affected than females. Infection poses
the most significant risk postoperatively in individuals undergoing
appendectomy (Lewis, Heitkemper, & Dirksen, 2004).
In the same
operation, the final element, removal of Ashley’s breast buds, prevented any
further development of the breasts and thus, the possibility of developing
fibrocystic breast disease or breast cancer, conditions for which Ashley has a
genetic predisposition. Fibrocystic
breast changes account for the most common of the benign breast conditions, with
peak incidence seen in women between the ages of twenty and fifty. Treatment is normally conservative and aimed
at reducing the associated symptoms of pain and tenderness with mild analgesics,
diuretics, or a low sodium diet during the premenstrual phase to reduce fluid
retention and pressure in the breasts.
Although familial history does increase the risk of developing breast
cancer, all women are considered to be at risk to some degree. With medical advances and proper screening
techniques, cancer can be detected in the very early stages. Mammography can detect cancerous masses two
to three years prior to clinical manifestations allowing for early intervention
and positive prognosis (Olds et al., 2004).
In addition to eliminating Ashley’s risk for fibrocystic breasts or
cancer, Ashley’s parents contended that removal of the breast buds would help
to assuage the discomforts that large breasts can cause when lying down or when
strapping Ashley into her wheel chair, and lessen Ashley’s sexual appeal to
potential abusers (Anonymous, 2007).
Ethical Considerations
With a basic
medical understanding, we can now venture into the ethical realm of the Ashley
Treatment. From a principlist
perspective, I will argue that the Ashley Treatment is morally unjustifiable
using the principles of respect for autonomy, beneficence, nonmaleficence, and
justice as the foundation of my arguments.
The principlist approach to ethical decision-making dates back to 1979
with the establishment of The Belmont Report, a document created by a
government-appointed group known as the National Commission for the Protection
of Human Subjects of Biomedical and Behavioral Research. The Belmont Report established the three
ethical principles of respect for persons, beneficence, and justice in an
effort to uphold and protect the rights of human subjects involved in
scientific research. Since the emergence
of The Belmont Report, ethicists have adopted and expanded upon these
principles to guide decision-making in a plethora of ethical issues, including
those that surfaced as a result of the Ashley Treatment (National Commission
for the Protection of Human Subjects of Biomedical and Behavioral Research,
1979).
To respect someone as an autonomous
individual implies a basic right to self determination and free choice
(Beauchamp & Walters, 1989). The
case of Ashley X presents a unique situation in that Ashley is not and,
according to medical projections, will never be a competent individual. So what implications does Ashley’s “never
competent” state have on her right to autonomy?
Being unable to make decisions for herself means that Ashley relies on
her parents to act in her best interests.
Proponents of the Ashley Treatment argue that Ashley’s best interests
and an improved quality of life provided the basis for decision-making. Because of growth attenuation, Ashley will be
able to remain in the home environment under the care of her parents. She will be repositioned frequently and
continue to be included in family activities and trips. With the removal of her uterus she will not
have to undergo routine PAP smears or experience monthly periods, promoting
optimal comfort and hygiene. Her smaller
size and flat chest will decrease her risk for skin breakdown and resultant
infections. She will be able to continue
to use her favorite stroller which allows for easy transportation around the
home, and she will continue to fit into a standard size bath tub (Shannon &
Savage, 2007). Opponents of the Ashley
Treatment, however, examine all of these so-called benefits and realize that
not only do they impact Ashley, but they also have a profound and arguably even
more substantial effect on her parents as caretakers. Without growth attenuation therapy, Ashley
would grow to normal adult size, but this does not necessarily mean that her
quality of life would be diminished.
Caring for Ashley, as a fully grown woman, would undoubtedly require
greater physical efforts on the part of her caregivers (Shannon & Savage,
2007). Ashley’s parents state, “We are
currently near the limits of our ability to lift Ashley at 65 pounds. Therefore, an additional 50 pounds would make
all the difference in our capacity to move her” (Anonymous, 2007, Limiting
final height using high-dose estrogen section, ¶ 5). In this statement the parents allude to the
personal struggles that they face on a daily basis to care for their growing
daughter. Incontrovertibly, parental convenience
was a motivating factor in the decision to use such highly invasive and radical
procedures.
Philosopher Immanuel Kant cautioned
that we must never use another human as a mere means to an end; rather, Kant
advised us to see all human beings as ends in themselves (Beauchamp &
Walters, 1989). Given the highly
experimental nature of the Ashley Treatment, opponents argue that Ashley has
been used merely as a research subject, an answer to questions about a
treatment that may be used in the future on other children with similar
disabilities. Furthermore, in the
article which brought the Ashley Treatment into the public eye, Ashley’s
physicians state, “The primary benefit offered by
growth attenuation is the potential to make caring for the child less
burdensome and therefore more accessible” (Gunther & Diekema, 2006, p.
1016). Broken down, this statement would
seem to imply that the Ashley Treatment was a means to convenience for Ashley’s
caregivers.
Regardless
of whether the Ashley Treatment benefits Ashley herself, Ashley’s parents, or
scientific enterprises, a central question that we need to consider is whether
the decision to institute this combination of treatments and procedures was
actually an act of beneficence, or a promotion of good, for Ashley. Opponents remain adamant that the combination
of high-dose estrogen therapy and surgical procedures comprising the Ashley
Treatment can never be justified as an act of goodness. Impulse-driven and premature, the Ashley
Treatment placed unnecessary dangerous risks on the young girl without any
indication. Ashley was not guaranteed to develop large fibrocystic
breasts like some of her ancestors.
Genetics is still a highly evolving science and one that is certainly
not fool-proof at this point.
Furthermore, not all women are
bothered tremendously by the occurrence of monthly periods. Research suggests that disabled girls who
have not reached continence present little or no negative reaction to
experiencing monthly periods and little extra care is required of caregivers
(Butler & Beadle, 2007). In
addition, the assertion that Ashley would be incapable of communicating the
presence of pain related to appendicitis seems implausible. After all, her parents claim, “Before the
surgery Ashley had already exhibited sensitivity in her breasts” (Anonymous,
2007, Preventing breast growth section, ¶ 1), implying that she was in fact
capable of relaying symptoms of pain.
Ethicist Benjamin Wilfond (Mims, 2007) offers that “some issues that
seem insurmountable when looking forward become more manageable when the
situation is at hand” (p. 3). Instead of
resorting initially to the most extreme form of intervention, Butler and Beadle (2007) recommend a “staged
and reactive approach” (p. 567). Surgery
may be an option but not before medical interventions have proven ineffective
and the surmised problems do, in fact, present themselves and evidence a tremendous
burden on Ashley’s quality of life.
Perhaps then we could argue
that the treatments upheld the principle of beneficence. On the same token, the Ashley Treatment
violates the principle of nonmaleficence which is based on the maxim primum non nocere, literally meaning,
“above all, do no harm” (Beauchamp & Walters, 1989, p. 30). Surely, the surgeries have inflicted harm
upon Ashley in the form of surgery-related pain, disruption of bodily
integrity, and potential complications that may arise in the future. Arlene Mayerson, a champion in disability
law, warns, “Benevolence and good intentions have been among the biggest
enemies of disabled people over the course of history. Many things that were done under a theory of
benevolence were later seen as wrongheaded violations of human rights” (Gibbs,
2007, p. 57). While
Ashley’s parents maintain that the treatment will ultimately serve their
daughter’s best interests, skeptics remain adamant that just the opposite is
true.
The
principle of justice demands that all persons are to be treated “according to
what is fair, due, or owed” (Beauchamp & Walters, 1989, p.32). Ashley’s physicians assumed the efficacy of
growth attenuation therapy based on data from studies that employed the use of
high-dose estrogen treatment for tall adolescent girls in the 1950s (Gunther
& Diekema, 2006). Consequently,
opponents argue that the Ashley Treatment was, in essence, experimental in
nature. To apply any type of treatment,
surgical or otherwise, on an individual when the short-term and long-term
ramifications remain ambiguous, is an absolute injustice, unless a proportionate reason exists to allow for the
treatment. In Ashley’s Case, however,
the parents’ speculative concerns, which include the development of large fibrocystic
breasts, pain associated with the menstrual cycle, and potential rape and
pregnancy, fail to provide justification for instituting risky treatments. Moreover, we have reasonable doubt to believe
that these concerns will, in fact, surface in the future. In ethics, we
commonly refer to the concept of a doubtful conscience. To act on a doubtful conscience, when we are
unsure about the consequences of our judgments, is morally forbidden (Murphy,
2001). The same concept holds true in Ashley’s case where a young girl’s
parents and physicians subject her to a series of treatments with irrevocable
and potentially fatal consequences. In a position paper titled,
“Sterilization of Women, Including Those with Mental Disabilities,” The
American College of Obstetrics and Gynecology asserts, “In disabled women with
limited functional capability, indications for major surgical procedures remain
the same as in other patients. In all
cases, indications for surgery must meet standard criteria, and the benefits of
the procedure must exceed known procedural risks” (Kirschner, Brashler, &
Savage, 2007, p. 1024). Novel treatments
designed for vulnerable individuals like Ashley should be held to the same
standards as those designed for the general population. Meticulous research efforts should be
instituted in order to clarify the risks, benefits, safety, and efficacy of
treatments prior to implementation.
Supporters of the Ashley Treatment counter that treatments whose risks outweigh
expected or known benefits are frequently instituted, for example, in children
with terminal cancer (Kirschner et al., 2007).
While this may be true, the exception occurs because the options are
either treatment with associated risks or guaranteed death. Experimental treatments can be permissible in
last ditch efforts; however in Ashley’s case opponents argue that Ashley is not
even suffering from any sort of disease or condition that warrants such highly
invasive treatment, if any treatment at all.
Bersani (2007) hesitates to even refer to growth attenuation as a
“treatment.” The alleged “therapy” aims
to target normal growth and development of a child, a phenomenon that, under no
circumstances, warrants medical intervention.
Brosco and Feudtner (2006) challenge that minors undergo surgery for
medically unnecessary aesthetic purposes quite regularly, without condemnation
from society. In rebuttal, opponents
clarify that in these instances, consent, or at the very least assent, can be obtained (AAIDD,
2006). More importantly though is the
fact that the risks of plastic surgery procedures have been well established at
this point. Applying any kind of
experimental treatment to an individual, especially when the individual is not
suffering from a condition that warrants medical attention, is a downright
violation of the principle of justice.
Disability
rights activists firmly believe that the Ashley Treatment paves the way to a
slippery slope. Ashley’s parents reason
that, because child-bearing is not a concern for Ashley’s future, she will not
need her uterus to bear children or her breasts for the purpose of
breastfeeding. Opponents point out the
danger of these arguments, which would seem to favor other forms of unjust body
modifications. For example, if arguing
that Ashley will have no use for organs that facilitate child-bearing, the same
could be said of Ashley’s legs. Because
she will never be able to walk, we should also be able to justify “amputation
therapy” (AAIDD, 2007, ¶ 12) under the same premise. Inspecting the issue from a broader
perspective, Clark and Vasta (2007) caution that the Ashley Treatment may be
seen as an option for other vulnerable individuals in our society with similar
disabilities such as spina bifida and cerebral palsy. Opponents also find dangerous the argument
that removal of the breast buds will decrease Ashley’s appeal to potential sex
offenders and that hysterectomy will prevent the possibility of pregnancy. To punish Ashley through disrupting her
bodily integrity presents an injustice.
Instead, punishments should be directly applied to the sex offender
(Liao et al., 2007). Furthermore,
Shannon and Savage (2007) point out that a hysterectomy may prevent pregnancy
but does not afford protection from abuse.
Moreover, while the parents may believe that they are decreasing
Ashley’s probability of abuse, critics warn, “Large breasts do not invite
abuse. Opportunity
and lack of supervision invite abuse” (Shannon & Savage, 2007, p. 176).
Distributive
justice refers to “the proper distribution of social benefits and burdens”
(Beauchamp & Walters, 1989, p. 32).
The Ashley case uncovers what is largely a failing of our society to
provide the proper support for families of children with severe cognitive and
developmental disabilities. Two conceivable
factors may be responsible for influencing the parents’ decision to seek out
and institute the Ashley Treatment.
First the parents were undoubtedly overwhelmed with anxiety about the
future and fear of lacking the adequate resources to care for their child as
she progressed into her adult years.
This fear prompted the most drastic form of intervention in a desperate
attempt to manage Ashley’s care in the future.
Ethicist Arthur Caplan, chairman of the Department of Medical Ethics at
the University of
Pennsylvania asserts, “I
think mutilating surgery involving removal of the breast buds is indefensible
under any circumstances. Growth
retardation is not a substitute for adequate home aides and home assistance”
(Burkholder, 2008, p. 3). While this
type of surgery is unacceptable, society needs to start advocating for greater
accessibility for home care, respite services, and community-based living
problems, and effective in-home equipment.
In addition, physicians and other healthcare personnel have a serious
knowledge deficit regarding the difficulties that disabled individuals and
their families face on a daily basis (Kirschner et al., 2007). The medical community has been condemned for
employing risky medical treatments and surgeries instead of advocating for
social reform (Shannon & Savage, 2007).
While critics say this is merely a utopian view, the medical
establishment is truly the keystone to the initiation of social change for the
disabled community and their families.
A second
factor that may have impacted the parents’ decision pertains to the negative
societal view, or stigma, that is commonly associated with disabled
individuals. Ashley’s parents allude to
this view in a statement on their website, “Given
Ashley’s mental age, a nine and a half year old body is more appropriate and
more dignified than a fully grown female body.” (Anonymous, 2007, Summary
section, ¶5). Many people in our society
are uncomfortable with the idea of adults who have below average cognitive
abilities. This fact is clearly
exemplified in a quote by George Dvorsky, a member of the Board of Directors
for the Institute for Ethics and Emerging Technologies. Advocating for the Ashley Treatment, Dvorsky
reasons, “The treatments will endow her with a body that more closely matches
her cognitive state – both in terms of her physical size and bodily
functioning. The estrogen treatment is not what is grotesque here. Rather, it
is the prospect of having a full-grown and fertile woman endowed with the mind
of a baby” (Liao, 2007, p.19). Ethicist
Norman Fost also makes reference to this “aesthetic disconnect” and argues in
support of the Ashley Treatment saying, “If children like Ashley could
magically retain the appearance of an infant, they would not only be easier to
care for in the physical sense, but the emotional reaction to them would
probably be more favorable” (Mims, 2007, p. 3).
This argument assumes that body size should be directly proportional to
cognitive ability, an argument that Liao and colleagues (2007) find completely
unreasonable when considering the number of fully grown adults in our society
living with dementia and other mental handicaps. Because of these conditions, many adults hold
cognitive abilities equivalent to that of a child, but we would never think to
transform their physical structures to resemble that of a child as well. Again, the potential for a slippery
slope becomes apparent. A lack of social
support combined with the stigmatization of
individuals with cognitive and developmental disabilities had a major influence
on the establishment of the Ashley Treatment in the first place. The costs of instituting the Ashley Treatment
are estimated to have far surpassed $30,000 (Carlson & Dorfman,
2007). Under
the principle of distributive justice, the plethora of resources allocated to
initiating the Ashley Treatment could have been better spent on
non-pharmacologic and surgical solutions to the burdens faced by families of
individuals with cognitive and developmental disabilities.
Legal Considerations
The
ethical principles of autonomy, beneficence, and justice are intricately
connected with the legal dimension of the Ashley Treatment. Perhaps at the forefront of this debate is
the view that the treatment performed on Ashley was a clear violation of human
rights. To value someone as an autonomous individual requires
an implicit duty to respect that person as a human being deserving of equal
rights. Especially in the case of
vulnerable individuals like Ashley, guardians must make beneficence-based
decisions that uphold the individual’s guaranteed rights. Ethicist Joel
Frader argues that by helping to ease the burdens of caretaking on the parents,
we are concurrently promoting the interests of the patient (Mims, 2007). This is a valid point but the best interests
of the patient cannot be realized at the expense of human dignity and rights
(NCPD, 2007).
The
Washington Protection and Advocacy System (WPAS) did, in fact, find that the
Ashley Treatment violated Washington
State law likely because
of a series of miscommunications and legal misinterpretations. Before the Ashley Treatment was approved,
Ashley’s parents and physicians sought advice from the hospital Ethics Committee. The Committee reached a general consensus of
approval for the Ashley Treatment after listening to and analyzing the
reasoning of Ashley’s parents and physicians.
However, the Committee recommended that the parents hire an attorney to
determine the permissibility of the treatment from a legal standpoint. Consequently, the parents consulted with
attorney Larry Jones who had experience with disability law. Mr. Jones forwarded to Ashley’s father an
opinion stating that he did not think a court order was warranted as
sterilization was not the intent, but
merely a consequence, of the procedure.
The opinion was forwarded to Ashley’s surgeon who, after consulting with
and gaining approval from the hospital’s medical director, proceeded with the
treatment. Washington State
case law states that a court order must be obtained any time parents seek to
sterilize a child who is unable to give consent either because of age or
disability. The parental right to make
medical decisions for their minor or non-competent children is not absolute. When decisions involve highly invasive medical
treatments or those that involve permanent and irreversible results, such as
the practice of involuntary sterilization through hysterectomy, judicial
proceedings must be sought. A
hysterectomy permanently denies an individual of his or her reproductive
capacity and the fundamental and constitutionally-protected right to
procreation (Carlson & Dorfman, 2007). In addition to obtaining a court order in
decisions involving irreversible procedures applied to disabled individuals
like Ashley, “a disinterested third party such as a guardian ad litem” who will “zealously advocate”
for the individual must be present to promote fair and humane decisions (Carlson
& Dorfman, 2007, p. 19).
Attorney
Larry Jones attempted to distinguish Ashley’s case from prior cases involving
the sterilization of individuals with developmental disabilities. Ashley’s degree of disability surpassed that
of the subjects in preceding cases involving sterilization and Mr. Jones
attempted to justify his recommendation for exempting a court order under this
very premise. This wrongful assumption,
that rights are individual specific, has been adopted by many, but provides a
poor justification for the Ashley Treatment. The WPAS asserts that “the amount
and scope of an individual’s due process and privacy rights is not on a sliding
scale” (Carlson & Dorfman, 2007, p. 23).
In other words all citizens are guaranteed equal protections, no matter
how minor or severe the degree of disability.
Though there is no way to know for certain what the outcome in this case
would have been in the event that a court order had been obtained, the WPAS
estimates with great certainty that the Ashley Treatment would not have come to
fruition. Gibbs (2007) states succinctly,
“If rights are inalienable, they exist whether the patient is aware of them or
not” (p. 56). The Ashley Treatment is a
highly invasive, risky, and irreversible set of procedures that has infringed
upon one girl’s constitutionally protected rights. While parents have a crucial responsibility
to make decisions for their children, this responsibility is not without
limitations as children have immutable rights and protections that must be
upheld under all circumstances (AAIDD, 2006).
Future Recommendations
As a result
of the Ashley Treatment, Seattle’s
Children’s Hospital agreed to a series of corrective actions and safeguards to
ensure the rights of disabled individuals like Ashley remain consistently
protected. Implementation of these
safeguards should be universally applied to all institutions where sterilization
and growth-attenuation practices have the potential to be abused. Such institutions should not be limited to
those with children as their main clientele as the potential for misuse of
these treatments applies to adults who are cognitively or developmentally
impaired as well. First and foremost,
all institutions must establish and adhere to policies that ban growth-limiting
medical interventions or sterilizations for disabled individuals in the absence
of a court order. “A growth-limiting medical
intervention means any medical intervention, including surgery or drug therapy,
that alters or is intended to alter a patient’s potential for normed physical
maturation” (Carlson & Dorfman, 2007, p. 25). Furthermore no intervention may be applied
until the time period for appeals has expired, except in the case of an
emergency. In addition to mandating
policies, institutions should implement “forcing functions” (Carlson &
Dorfman, 2007, p. 26) to prevent medical or surgical interventions that are
inconsistent with institutional policy.
A forcing function refers to “an aspect of a design that prevents
the user from taking an action without consciously considering
information relevant to that action. It forces conscious attention upon
something and thus deliberately disrupts the efficient or automatised
performance of a task” (Soegaard,
2008). Like Children’s Hospital, institutions can
utilize forcing functions within computer systems, for example, by designing
controls that alert healthcare personnel and prevent the scheduling of
surgeries like hysterectomy or mastectomy in the absence of policy review. Such forcing functions can be implemented
within pharmacies with attention to prescriptions and appropriate use of
pharmacologic therapies such as high-dose hormones prescribed for children or
developing adolescents. Utilizing
forcing functions will serve to ensure that healthcare personnel have, at a
minimum, acknowledged the policy, and ultimately protect the interests of
vulnerable individuals like Ashley. Also
related to protective actions, we cannot disregard the role of insurance
companies and reimbursement policy.
Ashley’s parents report that insurance fully covered the costs of
surgery as well as subsequent therapy, a fact that should come as a shock when
we consider the vast amount of people who struggle to receive coverage for
medical conditions which are truly life-threatening. Not only was the Ashley Treatment medically
unnecessary, it was a violation of human rights. We have to wonder how insurance companies can
approve a treatment of this nature while leaving others with astronomical
healthcare expenses to pay out-of-pocket for illnesses and disabilities that
truly warrant medical or surgical intervention. Policy reform is needed not
only within hospitals but within insurance companies to ensure that therapies
and procedures are reimbursed equitably.
A second
recommendation aims to target perhaps the most outstanding issue surrounding
the Ashley Treatment which is the obvious lack of education and awareness among
healthcare providers, legal figures, and the general public regarding the
day-to-day life experienced by disabled children and their families. Proponents of the Ashley Treatment maintain
that parents, not the courts, are in the best position to make medical
decisions that impact their child’s future (Wilfond, 2007). If we are going to limit the parents’
decision-making rights in situations involving human rights such as those that
present in the Ashley case, then we must be sure that those external voices,
for example the courts and ethics committees, truly comprehend the day-to-day
life of families with profoundly disabled children. Without that empathy and
understanding, it is virtually impossible to know what is truly in the best
interests of the child. Ethicist
Benjamin Wilfond (2007) suggests, “Perhaps the intensity of public concern
about the Ashley case is less about growth attenuation specifically than about
our collective lack of familiarity with the lives of children with profound
developmental disabilities” (p. 13). Disability
rights groups are in an optimal position to disseminate information to the
public by conducting public forums and implementing community outreach
programs. In addition, the healthcare
community, with a better knowledge and understanding of the challenges faced by
families of disabled individuals, can have a significant impact on
legislation. If political figures genuinely
understand the experiences of families like Ashley’s, we can surely expect a
push for better funding and social support to alleviate the highly undervalued
daily obstacles that confront the disabled.
This support would, in turn, decrease feelings of desperation
experienced by families who will then be able to realize better alternatives to
caring for their disabled children.
A final
recommendation that can be implemented concerns the structure and composition
of ethics committees. Examining the
Ashley case in retrospect, we cannot deny that the Ethics Committee of Seattle’s
Children’s Hospital had a substantial influence on the decision to execute the
Ashley Treatment. Unthinkable, however,
is the finding that the members of the Ethics Committee came to a collective
agreement in support of the Ashley Treatment under the premise that the
proposed surgeries and pharmacologic interventions had the potential to
“improve her quality of life, facilitate home care, and avoid
institutionalization in the foreseeable future” (Carlson & Dorfman, 2007,
p. 13). In light of the Ashley
Treatment, Children’s Hospital has agreed to include as part of their Ethics
Committee one or more members who have experience working with disabled
individuals. Appointing knowledgeable members who can advocate for vulnerable
individuals like Ashley will serve to diversify the perspectives from which
decisions evolve. All institutions should strive to broaden
membership in their ethics committees to include individuals who will serve as
advocates for the disabled community in order to facilitate fair
decision-making. If such a member is not
present, appropriate external resources should be sought when the subject of
inquiry is a disabled individual.
Representatives of the Disability
Rights Education and Defense Fund (2007) question how the system broke down,
resulting in a violation of human rights that should have remained
protected:
Where, we wonder, was the network of
programs and services that exist in every state when Ashley’s family decided
the best option was to employ medical procedures that violated their daughter’s
autonomy and personhood? Were other
families whose children have disabilities like Ashley’s asked to talk about
their experiences and how they solved problems as their children grew to
adulthood? Where were the social workers
and advocates who should be providing alternative perspectives? Why did the system fail this family and their
daughter? That, it seems to us, is a
fundamental question. (¶4).
Without a doubt, the system did fail
and Ashley, an innocent and defenseless young girl, exists as proof of these
failings. Through policy implementation
and safeguards to ensure adherence to policies, increased education, awareness,
and social support for the disabled population, and the appointment of
qualified individuals to hospital ethics committees, we can better uphold the
rights of those individuals in our society who cannot speak for themselves.
Conclusion
In
addition to permanently stunting the growth and reproductive capacities of
Ashley X, the Ashley Treatment permanently stripped a young girl of her human
dignity and rights. Ethically and
legally the series of medical and surgical interventions implemented
exemplified a serious wrongdoing and failure of society to protect the
interests of one extremely vulnerable individual. Ashley’s parents report that they have
received feedback from a number of families experiencing the perils of raising
a child with similar disabilities. Many
of these families have expressed interest in the Ashley Treatment. Others regret that this intervention was not
available to them before their child fully matured. We will most likely witness other families
requesting and expecting this treatment in the future; however, because of the
outrage that ensued as a result of the Ashley Treatment, these requests will
have to pass the tests of legality.
Although it is unfortunate that Ashley fell victim to this undignified
approach, future cases will demand more stringent legal safeguarding to ensure
that rights remain protected. As a purported
attempt to avoid serious complications in the future, the Ashley Treatment is a
radical and unjustifiable intervention.
Ashley was a young child developing normally with no clinical
manifestations that would seem to warrant this type of treatment. Instead, a more conservative and reactive
approach to actual problems would
have been ethically sound. When we
really begin to dissect the Ashley Treatment and all of its underpinnings, the
lack of societal support and stigmatization emerges as perhaps the greatest
issue. Liao and colleagues (2007) warn,
“Upholding human dignity comes with a price, and if it is what we should value
as a society, then we must be prepared to pay to uphold it” (p.19). The medical community is in a prime position
to advocate for individuals like Ashley.
Instead of resorting to barbaric practices like body modification,
society needs to develop a greater awareness of the burdens that families of
developmentally disabled individuals face, and start reacting in ways that uphold
each and every person’s human dignity and worth.
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