The Ashley
Treatment: Best Interests, Convenience, and Parental Decision-making
Forthcoming in
the
Dr S. Matthew
Liao
Professor
Julian Savulescu
Dr Mark Sheehan
Program on
Ethics of the New Biosciences
I.
The story of Ashley, a nine-year-old from Seattle, has caused a good deal of controversy since
it appeared in the Los Angeles Times on January 3, 2007.1 Ashley was born with a
condition called static encephalopathy, a severe brain impairment that leaves
her unable to walk, talk, eat, sit up, or roll over. According to her doctors,
Ashley has reached, and will remain at, the developmental level of a
three-month-old.2
In 2004, Ashley’s parents and the doctors at
In the case of incompetent children like
Ashley, parents are the custodians of the child’s interests and are required to
make decisions that protect or promote those interests. Doctors should also
offer treatments that are in Ashley’s best interests. It would be wrong to
offer a treatment that was against the interests of the child but in the
parents’ (or others’) interests. The central questions in medical ethics in
relation to this case are: Were these treatments in Ashley’s best interests? Do
they treat her as a person with dignity and respect, and were they likely to
make her life go better?
II.
Ashley’s parents argue that they sought the Ashley treatment in
order to alleviate Ashley’s “discomfort and boredom.” Their contention that
stunting Ashley’s growth was done for sake of improving “our daughter’s quality
of life and not to convenience her caregivers” is controversial.
According to her parents, keeping Ashley
small—at around seventy-five pounds and four feet, five inches tall—means that
Ashley can be moved considerably more often, held in their arms, be taken “on
trips more frequently,” “have more exposure to activities and social
gatherings,” and “continue to fit in and be bathed in a standard size bathtub.”
All this serves Ashley’s health and well-being because, so the parents argue,
“the increase in Ashley’s movement results in better blood circulation, GI
functioning (including digestion, passing gas), stretching, and motion of her
joints,” which means that Ashley will be less prone to infections.
Undoubtedly, the parents are right that Ashley
will benefit in the manner they have proposed if they can do all these things
for her. The claim about the value of small size in a particular social
circumstance is certainly not unique. Dwarves have given the same argument as a
justification for preferring to have short children. They have argued that
parenting dwarves is desirable for them because of their own size and because
they have made modifications to their homes and their surroundings to take into
account their short stature.4
As a general point, it is entirely conceivable
that in some natural, social, or psychological circumstances, having a normal
body may be a disadvantage. In H.G. Wells’ short story “The Country of the
Blind,” Nunez, a mountaineer in the
Of course, Ashley’s parents may have had other
motives besides her benefit. Many critics have claimed that what her parents
were really after was to make things easier or more convenient for themselves.
Convenience may have been at least part of their motivation. Her parents could have found ways to take
care of Ashley even if she had grown to her normal size of five feet, six
inches. They argue that they were already near their limits when lifting
Ashley; but if their own convenience was no consideration, they could have
augmented their strength by hiring people to help them, or by going to the gym,
or by taking steroids, and so on. We are not advocating any of these things; we
are asserting only that since the parents could have taken these measures, part of the rationale for making
Ashley smaller may have been their own convenience.
This said, acting out of the motive to
convenience the caregivers or otherwise promote their interests is not
necessarily wrong, for two reasons. First, motives may only form part of the
justification of the treatment of children. Whether the treatment will benefit
or harm them is just as important, and sometimes even more so. Imagine a parent
who takes a child with appendicitis to a hospital merely hoping that the child
will get admitted so that the parent can get some badly needed sleep. Does this
make it wrong to perform an appendectomy? Obviously not.
In such a case, the justification of the procedure depends on the interests of
the child and not on the motives of the parents (though of course the two can
be related).
Second, in any plausible moral theory, moral
obligations should typically not be so demanding that one must make enormous
sacrifices in order to fulfil them. As Judith Jarvis
Thomson observes, “nobody is morally required to make large sacrifices, of health, of all other interests and
concerns, of all other duties and commitments . . . in order to keep another
person alive.”5 Exactly where the demands of morality stop, especially in the
case of parents, is not easy to say. But, arguably, if Ashley’s parents have to
take steroids, which may have side effects, in order to move Ashley around, or
if they will have to impoverish themselves in order to hire additional
caregivers, then these alternatives might just be too demanding, and Ashley’s
parents would not be obligated to pursue them.
Of course, someone might accept that the
demands of morality have limits but still question whether stunting Ashley’s
growth for her caregivers’ convenience is justified. Indeed, many are worried
that the Ashley Treatment might represent a return to the practices of the
eugenics movement and be an affront to human dignity.6 In particular, it has
been asked whether, if it is permissible to stunt Ashley’s growth to keep her
small, why it is not also permissible surgically to remove her legs to keep her
small. Needless to say, it is disturbing to think of a scenario in which
severely disabled institutionalized children are subjected to mass surgery and
growth-stunting to make the staff ’s work easier.
These questions raise issues concerning the
ethics of body modification. Some forms of plastic surgery are performed on
children: “bat ears” are sometimes corrected to prevent a child’s being teased,
and growth hormone or estrogen treatment is sometimes provided to children
predicted to have short or tall stature.7 However, other forms of body modification that might be allowed
in adults are not permitted in children. A Scottish surgeon, Robert Smith,
amputated the healthy legs of two patients suffering from apotemnophilia.
The patients had received psychiatric and psychological treatment prior to the
operation, but did not respond. Both operations were carried out with private
funding, and the patients said they were satisfied with the results.8 But this kind of surgery
could not be ethically performed on healthy children because it is not
plausibly in their interests, given the risks to, and the stress such an
operation would impose on, their bodies. For this reason, surgically removing
Ashley’s legs just so she would be easier to care for would be unethical.
Giving Ashley estrogen to stunt her growth is
obviously controversial but may be justifiable in this circumstance. Imagine
that as a part of Ashley’s condition, her body would grow to five times the
size of other people. She would be enormous. In such a case, it does not seem
too objectionable to arrest this kind of development through pharmacological
means to allow her to be nursed and cared for, even if this is done partly for
the caregivers’ convenience. That is, suppose that if her development was not
arrested, providing her with decent care would
eventually require twenty people. If this is right, the question is not whether
development may
be
arrested, but only when it may be arrested.
Here it is important to point out that
decisions of this kind should be made on a case by case basis, with independent
ethical review, such as occurred in this case through a hospital’s clinical
ethics committee. In general, it is inappropriate for institutions to
biologically modify their patients to make them easier to manage, though
clearly many demented people are sedated for this purpose. The benefits of
being cared for at home by one’s family may warrant imposing some burdens on
incompetent dependants to enable them to remain at home and to make it possible
for care to be delivered there. 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.
III.
The removal of Ashley’s uterus and her breast buds is another
matter. Ashley’s parents argue that a hysterectomy will allow her to avoid the
menstrual cycle and the discomforts commonly associated with it, eliminate “any
possibility of pregnancy,” and also eliminate the possibility “of uterine
cancer and other common and often painful complications that cause women later
in life to undergo the procedure.” We find these arguments debatable.
For starters, it is unclear how much
discomfort women suffer from the menstrual cycle, and whether the level of
discomfort justifies hysterectomy. Also, even if Ashley will experience some
discomfort, it is unclear why less invasive methods— such as giving Ashley pain
killers whenever she experiences cramps—are not sufficient. Furthermore, removing Ashley’s uterus may
cause her ovaries not to function normally as a result of a compromised supply
of blood.9 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.
Regarding unwanted pregnancies, while this
does occur sometimes, the parents’ statement gives the impression that sexual
abuse is a given to one in Ashley’s situation. Also, the parents may be in
danger of blaming the victim. Ashley would get pregnant only through sexual
abuse, but surely action should be taken against the offenders rather than
Ashley. In any case, there are less invasive ways of avoiding pregnancy, such
as putting Ashley on birth control pills.
Finally, regarding the possibility of uterine
cancer and other painful complications, it seems premature to undertake a
preventive measure when no one knows whether the symptoms will ever manifest.
Giving Ashley regular health checkups seems to be much more appropriate and
less invasive.
According to Ashley’s parents, surgically
removing Ashley’s breast buds is justified because Ashley will not be
breastfeeding. In addition, their presence “would only be a source of
discomfort to her” because Ashley is likely to have large breasts, and “large
breasts are uncomfortable lying down with a bra and even less comfortable
without a bra.” Moreover, they “impede securing Ashley in her wheelchair,
stander, or bath chair, where straps across her chest are needed to support her
body weight.” Furthermore, removing her breasts also means that she can avoid
the possibility of painful fibrocystic growth and breast cancer, which runs in
Ashley’s family. Finally, according to the parents, large breasts “could
‘sexualize’ Ashley towards her caregiver, especially when they are touched
while she is being moved or handled, inviting the possibility of abuse.” Again,
we find these arguments problematic. We shall start with the ones that have
been addressed previously.
In arguing that the breasts could “sexualize”
Ashley, the parents are again in danger of blaming the victim for possible
abuse. Moreover, someone might sexually abuse Ashley whether she has breasts or
not. The focus should be on the potential sex offenders.
The argument that breasts would make securing
Ashley in her wheelchair difficult, and so on, is an argument from convenience.
Like the previous argument about size, it depends on how likely the harm to
Ashley would be and how great the sacrifice of coping with management would be.
Unlike Ashley’s height and weight, in this case, it does not seem too demanding
to require the parents to look for straps that would be more suitable for a
larger breast size. Even if Ashley had been allowed to grow her breasts to
their full potential, surely there are disabled persons with similar breast
sizes, and their caregivers have apparently been able to use straps that are
suitable for them (although the situation may be different when the patient’s
disability is as grave as Ashley’s).
The possibility of painful fibrocystic growth
and breast cancer is similar to the risk of uterine cancer; here, too,
undertaking a preventive measure when the symptoms have not manifested seems
premature. Even in the case of familial breast cancer, such as cancer linked to
the genes BRCA 1 and 2, it is still not standard medical practice to offer
prophylactic mastectomy to children, even those with a permanent intellectually
disability that renders them incompetent. Many would argue that screening is
preferable until there is more debate on the justification of prophylactic
surgery in incompetent people.
The argument that Ashley does not need her
breasts because she will not breastfeed (making her
breasts only a “source of discomfort”) assumes that the sole function of having
breasts is for breastfeeding. Allowing Ashley to develop breasts may enable her
to form and complete her gender identity. It is true that gender assignment
surgery has been performed on children at birth in cases of intersex
conditions,10 but there is a growing consensus that surgery should be delayed
until the child can make his or her own decision about it.11 Ashley will never (on the
evidence provided) be able to decide for herself. But there is a difference
between gender assignment and gender elimination. Ashley’s parents argue that since Ashley has the mental state
of a three-month-old, it is more fitting for her to have the body of an infant.
They cite the statement of George Dvorsky, a member
of the board of directors for the Institute for Ethics and Emerging
Technologies, approvingly:
If the concern has something to do with the girl’s dignity being
violated, then I have to protest by arguing that the girl lacks the cognitive
capacity to experience any sense of indignity. Nor do I believe this is somehow
demeaning or undignified to humanity in general; 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.
This argument implies that anyone with the mind of a baby should
have the body of a baby, but there’s no reason to think this is true. Indeed,
suppose a woman in her forties has such severe dementia that her mental state
is reduced to that of a baby; to hold that she should no longer have breasts is
absurd.
It is important to remember that surgical
procedures like hysterectomy are not without risks. Anaesthetics
are occasionally lethal, and the surgical complications can include perforation
of the bowel, infection, and occasionally death. All told, drug treatment to
stunt growth seems more justifiable than the surgical modifications.
IV.
Ashley’s case calls to attention the fact that every able person
in our society has at least a prima facie duty to provide support and
assistance to those who are providing care, not just for the likes of Ashley,
but also for all normal children, the elderly, and others in care. Because of their
basic, biological need for love, children have a human right to be loved.12
Successfully discharging the duty to love children requires
considerable time and resources. Possibly some parents can successfully
discharge this duty using their own resources. But for many others, it can be
quite difficult, owing perhaps to the demands of employment or of other family
members. However, if the right of children to be loved is a human right, and if
the duties that stem from such a human right are applicable to all able persons
in appropriate circumstances, then all other able persons in appropriate
circumstances have associated duties to help parents discharge their duties to
love their children. Such help might mean supporting better child care programs
or advocating flexible workplace policies that would make it easier for parents
to care for their children. It might also mean paying taxes and voting for
policies that would help parents discharge their duties.13
This argument can be extended to the case of
Ashley and others who require care, such as the elderly. Those who require care,
like Ashley, have a fundamental need—and, therefore, a human
right—to be cared for; and we, as members of society, have an associated
duty to support policies that help their families care for them.
One of the main objections to the Ashley
Treatment is that Ashley’s disadvantage is socially constructed. If more
resources were available for her care, then she could be nursed and cared for
in a normal adult size. Those who defend the Ashley Treatment are right to
respond that because these resources are not now adequately provided, Ashley’s parents
may be taking the only option open to them. Indeed, to deny her both the
necessary social resources and medical treatment is to doubly harm her. If we
as a society believe that it is undignified, as a matter of human rights, for Ashley
to undergo these treatments, then we must be prepared to provide her caregivers
with enough assistance and support that they would not have to resort to these
means. 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.
Acknowledgments
We thank Wibke Gruetjen for helpful
discussions and comments on earlier versions of this paper.
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