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doi: 10.1136/jme.2009.0299342009 35: 658-661J Med Ethics

N Tan and I BrassingtonAgency, duties and the ''Ashley treatment''

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Agency, duties and the Ashley treatment

N Tan, I Brassington

Centre for Social Ethics andPolicy, School of Law, Universityof Manchester, Manchester, UK

Correspondence to:Naomi Tan, Centre for SocialEthics and Policy, School of Law,University of Manchester,Oxford Road, Manchester M139PL, UK; [email protected]

Received 1 March 2009Revised 14 April 2009Accepted 5 June 2009

ABSTRACT

In 2006, a paper in the journal Archives of Pediatric and

Adolescent Medicine described a novel case of growthattenuation therapy and other treatments carried out onAshley, a severely cognitively, neurologically and physi-cally disabled 6-year-old girl. Some of the moralarguments that have sprung up in respect of the so-calledAshley treatment are considered, and it is suggestedthat they all miss somethingthat the proper treatment

of Ashley may have as much to do with doctors duties tothemselves as with their duties to her. It is suggested

that the Ashley treatment may have been in violation ofdoctors self-regarding duties and that this possibility isworthy of further investigation.

In 2006, a paper appeared in the journal Archives ofPediatric and Adolescent Medicine describing a novelcase of growth attenuation therapy carried out on

Ashley, a severely cognitively, neurologically andphysically disabled 6-year-old girl. Hormone treat-ment had been given to her to prevent her fromgrowing larger. This growth attenuation therapywas billed by its advocates as a new approach toan old dilemma.1 The child was highly dependenton her parents for all types of care, and thetreatment was proposed primarily to prevent theold dilemma of this care becoming increasinglydifficult or impossible as the child grew physicallylarger. Growth attenuation treatment wasintended, according to doctors, to make caringfor the child less burdensome and therefore moreaccessible.1 The treatment was one of a largernumber of interventions (including hysterectomyand the removal of Ashleys appendix and breastbuds) dubbed the Ashley treatment.

The Ashley treatment received hospital ethicscommittee approval in the US hospital in which

Ashley was a patient. Perhaps unsurprisingly, italso prompted international debate within boththe medical and popular media.210 Nevertheless, ithas as yet generated little academic ethics litera-ture. In this paper, we consider some of the aspects

of the case that might reasonably be expected toappear in this debate and offer a perspective thatmight be overlooked. Our main concern has to dowith an analysis of how medics ought to deal withthe non-competent, especially in respect of anumber of common claims about beneficence andautonomy in medical decision-making. However, itmay be worth rehearsing the facts of the casebefore plunging into the ethical analysis.

ASHLEY, GROWTH ATTENUATION THERAPY ANDTHE ASHLEY TREATMENT

Ashley was born by normal delivery after a normal

pregnancy. When she was 1 month old, delayswere noticed in her development, though no cause

could be found for her global developmentaldeficits.1 She was diagnosed as having permanent

brain damage of unknown origin and her cognitiveand motor development did not progress beyondthose of an infant. By the age of 6, she could smileand vocalise, but non-verbally; she was unable tohold herself in a sitting position or to ambulate inany way; she was dependent to the point ofneeding to be turned in bed to avoid bed soresforming as a result of her immobility; she was fedthrough a gastrostomy tube and she was doublyincontinent. Her parents, who were her full-timecarers, were (according to their blog) not sure sherecognizes us.11 Ashley was not expected toprogress from this state. However, Ashley was,and is, not sick as such; her condition is not

curable but it is stable and is likely to remainunchanged as long as she lives.

Ashley was brought to medical attention whenshe was 6 years of age because she showed signs ofearly puberty. These signs were investigated anddeemed to be normal in a child such as she;however, concerns were raised about her future.Notably, as Ashley got bigger, caring for her athome would become increasingly difficult; plausi-bly, her parents would no longer be able to lift herto move and cuddle her without aid of some sort.

Ashleys parents were determined to keep her athome (and, indeed, there is currently a (contro-

versial) movement in the USA to end all institu-tional care for children).2 Ashleys doctorsidentified her increasing size as the source of herproblems and, in response, proposed growthattenuation treatment.

This treatment involved the administration ofhigh doses of oestrogen with the aim of closing thegrowth plates of the long bones to prevent furthergrowth. Growth attenuation in children such as

Ashley is novel, so the risks to her were unknown. Ingeneral, high-dose oestrogen therapy is known tocause unwanted uterine complications, so Ashleyunderwent a prophylactic hysterectomy. Duringthat abdominal surgery, her appendix was removedto eliminate the risk of appendicitis. Oestrogenwould also cause growth of her breasts, so her breastbuds were surgically removed. (Additionally, herfamily had a history of fibrocystic growth andcancer; breast bud removal would prevent any suchconditions arising.11) It is important to make clearthat the removal of Ashleys uterus and breast budswas not intended to treat any existing pathology,and nor was it central to growth attenuationtherapy. Rather, it was intended to anticipatepossible complications of the treatment (and this iswhy the Ashley treatment is more than just growthattenuation treatment).

After treatment, Ashley stopped growing at133 cm; her predicted full height before treatment

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had been 165 cm. Her estimated adult weight was reduced byaround 23 kg.11

THE ETHICAL PROBLEM

Although the intensity of reactions both for and against growthattenuation therapy suggests that an ethical dilemma may beinvolved, the source of the issue is not unequivocal. Schmidt has

looked at growth attenuation from a rights perspective andconcluded that, when used in severely incapacitated children,minimal rights violation occurs. This is because such profoundlydisabled children do not have the capacity to have interests andeven if they had them, they are incapable of taking advantage ofthe opportunities that being adult-sized presents to mostpeople.12 Edwards has suggested that although the principlebehind the Ashley treatment may be defensible, it maynevertheless still be invoked to defend other interventions thatare prima facie disquieting.13

Either way, we would do well to remind ourselves that thedirect benefits to Ashley of this invasive treatment wereminimal. The treatment was not palliative: it did not addressany existing symptoms. Nor did it purport to modify the

prognosis of the underlying condition in any waythe childscondition was incurable but stable. Strikingly, Ashleys doctorsreason for their intervention was that

the primary benefit offered by growth attenuation is thepotential to make caring for the child less burdensome and thereforemore accessible. A smaller person is not as difficult to move andtransfer from place to place.1 [emphasis added]

What is notable about the statement is the manner in whichit seems to shift the moral focus from Ashley and her needstowards her carers and theirs. It is not clear, though, whetherthis reason suffices to justify intervention. There are, after all,any number of situations in which medical intervention might

well make caring for a patient more easy and accessible, and inmost cases we would want to say that there is something odd(at best) about imposing an interventionespecially one asradical as the Ashley treatmenton Smith so that Jones jobmight be easier. It follows that the Ashley treatment violated anorm that we would expect to see upheld for most patients andwas therefore morally dubious.

On the other hand, dubious is not necessarily the same aswrong. Treating Ashley might not be morally problematic ifsome morally relevant distinction can be drawn between Ashleyand other patients. We shall consider whether there was anysuch difference in respect of this unusual procedure in amoment.

Before that, though, and for the sake of completeness, it isworth noting that, for their part, Ashleys parents cited variousreasons why being small might be beneficial to Ashley in theirblog.11 Because Ashley lies still constantly, a smaller, lighterbody would, ostensibly, make her easier to move. Movementwould bring several benefits: it would reduce the likelihood ofcomplications of immobility such as bed sores; it would increaseblood circulation, gastrointestinal function and joint mobility;and care would be more stimulating if she could be movedaround the house, outside and on family trips. When thetreatment was carried out, she could be carried by one adult andthis would remain possible if growth attenuation were under-taken.11

Ashleys parents also expressed a concern that [l]arge breasts

could sexualize Ashley towards her caregiver, especially whenthey are touched while she is being moved or handled.11 We

shall say little about this supposed reason to operateexcept towonder aloud whether the sort of person who sees the helplessin a sexual light is really the sort of person for whom cup sizemakes much of a difference.

On the face of it, and sexualisation aside, the reasonsproduced by Ashleys parents for the Ashley treatment seemtolerably powerful. However, it is important to note that it istheir appeals to movement and its benefits and to stimulation

and its benefits that carry the moral weight. While we have nodesire to gainsay the supposition that these are good things, it isnot clear why invasive medical intervention such as growthattenuation treatment was deemed to be the best way toachieve them. Increased movement and stimulation couldfeasibly be achieved, for example, by non-invasive environ-mental adjustments such as harnesses, hoists and the provisionof carers. In a sense, the wider Ashley treatmenttaking intoaccount that it also involved a hysterectomy, appendicectomyand breast bud removal to protect against problems of as yetunknown severity that might not appear anywaymightrepresent less of an attempt to meet the challenges of Ashleyscondition than an attempt not to have to meet them. At thevery least, it is not obvious that the Ashley treatment was theonly or even the best response to the challenge of caring for her.

Again, it is not clear that it would be acceptable to deal withmost patients in this way: so, again, we might want to knowwhether and what different rules apply here.

ASHLEY, PERSONHOOD AND AUTONOMYExtraordinary treatment of Ashley might be defensible if she ismorally extraordinary. What, thenif anythingmakes herdifferent? If she is significantly morally different from otherpatients, ought this to matter to doctors when they maketreatment decisions? Would it be sufficient to merit treating achild in a way that would be considered unacceptable in anormal patient?

An obvious starting point may be to make an appeal toautonomy or personhood and Ashleys probable lack thereof.

Autonomy and personhood are taken by many to go hand inhand, meaning that respect for autonomy and respect forpersonhood are hard to prise apart. Since it is taken by many tobe the case that autonomous agents are persons, and vice versa,let us call those creatures with autonomy and personhoodagents for the sake of ease.

Though it is not easy to identify exactly what makes foragency, it is still something that is accepted by many as being anecessary and sufficient condition of high intrinsic moral worthand as a fundamentally important part of our treatment ofothers: merely possessing it is taken to indicate that it ought not

to be violated, and we have a duty to respect persons inasmuchas they possess agency. We do not have the same duties towardsnon-agents as towards agentsdeliberately doing trivial andreversible harm to a person is, most would agree, different fromdoing significant and irreversible harm to the persons portrait.Implicitly, then, non-agents occupy a place much lower on themoral ladder than do agents.

Whatever, precisely, agency turns out to be, it is reasonablyclear that Ashley lacks it. Therefore she lacks (and is notexpected to attain) an important characteristic that many thinkproperly determines our relationships with (most) otherhumans. Of course, she is not unique among humans in lackingagencyinfants and the unborn are, by virtue of their age, notagents. However, Ashley is as different from them as she is from

most other humans because of the fact that she is expectednever to attain agency. The very young can reasonably be

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thought of as having a moral value by virtue of what they willbecome; Ashley cannot. To this extent, Ashleys lack ofautonomy means that the concerns that apply to her differfrom those that apply to much of the rest of humanity.

Certainly, this line might be thought to make a moraldifference in respect of claims about the benefit of growthattenuation treatment, since it would make Ashley easier totreat. If we think that it is agency that underpins any claim to

inherent importance or being an end in oneself, then we maythink that, modus tollens, Ashley has no claim to being aninherently important end in herself. And this might make thedifference between treating her in such a way as to make hercare easier and treating others similarly: it is perhaps not wrongto treat Ashley as a non-end, because that may be what she is.

Indeed, we might think that whatever we ought to do inrespect of Ashleys treatment is less for her sake than for thesake of those around her. For example, we might feel that herparents and their interests represent something we ought toconsider. Not only is it the case that they are agents and thushave an intrinsic moral gravity that their daughter perhapslacks; it is also the case that the intimate nature of theirrelationship with Ashley means that the medical problem is notuniquely Ashleys: they are involved, too, and are a properobject of medical concern in some sense. And there is a sense inwhich the burden of Ashleys condition will fall on themmore heavily than on her. Moreover, we would not be ignoring

Ashley and her interests in such an argument: it seemsdefensible to say that serving her parents interests would,indirectly, be a way of serving hers, such is the moral proximitybetween them and her. Considering Ashleys lack of agency andthe fact that she is entirely dependent on her family for care,doctors were (we might want to say) right to consider herprimarily as a member of her family unit, rather than as anindividual. Even if we think that individual agents areirreducibly important, and even if we are hostile to treating

agents as components of a larger body, it would still be hard todeny that where agency is lacking, the focus on individuals asobjects of concern is no longer mandated; and this seems toopen the way to identifying the focus of concern elsewhere.

Capitalising on this notion of moral proximity, a more radicalposition might be that families as well as individuals can be theproper objects of moral and medical concern. Granted this, wemight imagine someone claiming that the family unit as awhole ought to be at the centre of moral decisions concerningprocedures to be carried out on Ashley.

However, though there might be nothing terribly wrong withtreating the family unit in toto as the object of direct moralconcern, if we are prepared to accept this it becomes harder tosee why we are not treating Ashley as such. For although afamily might consist of agents, it is not an agent in its ownright. And if we are prepared to treat one non-agentsuch as afamilyas a direct object of moral concern, then it is hard tosee why we mightnt have the same attitude to another non-agentsuch as Ashley.

Still, it is quite something to say that, even if the family per seis not the proper object of moral attention, Ashleys parents are,and that their interests do trump those of a non-agent such as

Ashley. Maybe agents are just more important and there isnothing too improper about Ashley having undergone atreatment for a benefit that would primarily be felt by others.

However, we shall leave hanging the question of whether thisis compelling, becauseas with all the lines of reasoning just

consideredit presupposes that agency is the central issue tobegin with. If it is not, then worries about it and whose agency

most properly ought to concern healthcare professionals may bemoot or, at least, may have to share our attention. And there isroom to suggest that others agency is not the only considera-tion in moral decision-making.

DOCTORS AND PATIENTS

Recognition that someone or something is an agent is sufficient,in most accounts, to mean that we have certain duties in respectof them. However, it is not necessary: we may have duties inrespect of other entities notwithstanding any further claimsabout their metaphysical and moral status.

We have suggested that if we consider Ashley in terms ofautonomous agency, her moral status is low. Such a moraldifference between her and other patients who do or could haveagency might mean that someone like Ashley would fall outsidethe domain of the standards applied in treatment of thoseagents. However, this makes the assumption that moral agents(in this case doctors) act in a moral way because of the moralstatus of the recipient of their good act. This is not somethingthat we have to accept as a given. Indeed, there is a brand ofKantian argument that may lead us to reject it wholesale.

Such an argument would turn the assumption on its headand insist that the source of at least some of agents duties liesin the mere fact that theyare agents, not because the objects oftheir concern are agents as well. Our duties may coalesce aroundsomething notwithstanding that that something is not an agentat all. We could call this non-agent the patient. Thus doctorswould act in the same manner to all their patients because,regardless of the moral status of the patient, doctors actionshave something to do with their own moral status, which isconstant.

This kind of argument is suggested by a number of claimsthat Kant makes. The first of these is that we have duties to self.(Jens Timmermann makes the provocative point that it is only

since Kants time that we have come to think of morality asbeing necessarily or primarily other-regarding.14) Our primaryduty to ourselves is to maintain our humanityour capacity toact as moral agents:

[W]e may ask how, if a man degrades his own person, anythingelse can be demanded of him? He who violates duties towardshimself, throws away his humanity, and is no longer in a positionto perform duties to others.15

This duty, Kant thinks, is fundamental to, and inseparablefrom, there being any duties at all. However, this is not thewhole of the story, and one of the passages in which Kantconsiders the substance of our duties to ourselves would appearto be highly pertinent to cases such as Ashleys.

With regard to the animate but non-rational part ofcreation, says Kant in The Doctrine of Virtue,

violent and cruel treatment of animals is far more intimatelyopposed to a human beings duty to himself, and he has a duty torefrain from this; for it dulls his shared feeling of their sufferingand so weakens and gradually uproots a natural predispositionthat is very serviceable to morality in ones relations with othermen.16

Implicitly, violent and cruel treatment of animals meansmore than simply treating them as something to be killed andeaten: it is the fact that it causes unnecessary suffering thatcounts. For Kant, we have a duty not to cause unnecessary

suffering to a non-agentic animal because of the damage it maydo to our moral predispositions rather than because it is wrong

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in its own terms. The pertinence of this to the Ashley caseought to be clear: in Kantian terms, she is, and will remain, anon-agentic part of animate nature. As such, we have a duty notto cause her unnecessary sufferingthat is, a duty that we oweourselves. Butthe thought may gothe Ashley treatment isthereby rendered problematic. After all, it will plausibly causeunnecessary suffering: Ashley is not insensible to the pain ordiscomfort surgery may cause her, and her non-agentic nature

means she is inherently unable to rationalise the discomfort.She could benefit from the world around her through non-surgical means. Furthermore, she might never get breast diseaseor appendicitis even without the prophylactic breast budremoval and appendicectomy, so they are plausibly not goingto provide any benefits at all. Certainly, it might be that somesuffering is unavoidable in a case such as Ashleysbut that isnot a reason to cause suffering surgically.

Kants claim about animate nature follows and elaborates awider claim about our duties in respect of even inanimatenaturenotably a duty to refrain from wanton destructionthereof, which

is opposed to a human beings duty to himself; for it weakens or

uproots that feeling in him which, though not of itself moral, isstill a disposition of sensibility that greatly promotes morality orat least prepares the way for it: the disposition, namely, to lovesomething even apart from any intention to use it.16

This, too, seems to have a bearing on the Ashley treatment. Itis wantonness that concerns Kant in this passage: he is notclaiming that it is wrong to destroy nature, and such a claimwould be insupportable for as long as we want to dig bits ofnature out of the ground and use it to construct the finebuildings of Konigsberg. Rather, his worry would seem to bethat wantonness implies a disposition of willingness to actwithout a clear reason, and that such a disposition isantagonistic to a disposition important to morality. Therefore

we have a duty to ourselves not to act wantonly.Once again, this seems to speak to the Ashley treatment. We

have already suggested that the treatment solves problems,merely possible problems and (in respect of the sexualisationclaim) non-problems in an unnecessarily complicated andinvasive way. As such, it involves a set of procedures that thereis no particular reason to perform. That there is no reason topursue surgery implies that it is, to some extent, wanton (or, atleast, that there is a risk of its being so). On this account, we donot even have to appeal to the suffering that may or may not becaused. Not acting for a reason generates a reason not to act.

Either way, certain actions may be morally ruled out eventhough the thing upon which we are acting has no strictentitlement to any other form of treatment. To this extent, atleast some of our obligations are matters of virtuehaving to dowith usrather than matters of right. The nature of theseobligations does not, and cannot, make reference to the object ofour attention: we would have the same duty to regulate ourbehaviour in even a universe that, apart from ourselves, waspopulated only by non-rational beings, since it is clear from Kantsmoral thoughtthat dutiesdo nottake anything from thecontext inwhich actors find themselves. (The world, on this account, merelyprovides a context for the discharge of our duties.) If the duty isowed to anyone at all, it is to the agents themselves.

Granted this, Ashleys putatively low inherent moral worthwill not alter the obligations we have in respect of her. If wehave obligations in respect of non-agents, questions concerning

whether or to what extent she is an agent and her place in thehierarchy vis-a-vis others drop somewhat out of the frame. In

treating a non-agentan animal, or Ashley, as the case maybemerely as a thing or a problem to be solved, we may nothave wronged it or her, but we may be in danger of violating ourduties to ourselves.

A SUGGESTIONIf there are obligations to incompetent patients such asbeneficence and non-maleficence, and in the absence ofprimary concerns such as the moral law being manifestedwithin such people, then these duties to oneself look as thoughthey might well be what grounds them. Such an account wouldneed more working out. But it seems plausible, and hints atsome intriguing lines of argument.

The most important of these is that, inasmuch as Ashley is apatient towards whom our obligations are founded in a duty toself, then she is no different from any other non-agent. That isto say, exceptionalism in respect of someone like Ashley isunwarranted, and if procedures such as prophylactic breast budremoval are unacceptable in other non-agents, then they areunacceptable here. Mutatis mutandis, the same sort ofconsideration would obtain in respect of any non-agent: we

cannot do to them what we would be unwilling to do to theirbrothers. Working in the other direction, there would seem tobe an argument to be made along the lines that, if Kant andKantians are correct to worry about how we treat inanimatenature on these grounds, then they ought to worry about howwe treat people like Ashley, too.

While there may be a case to be made for the acceptabilityor even the desirabilityof some aspects of the Ashleytreatment, it would seem that other aspects are much moreproblematic, and worrisome. These worries seem to be worthyof further investigation; and the results of this investigationmay well resonate beyond questions of what we may do to onedisabled little girl.

Competing interests: None declared.Provenance and peer review: Not commissioned; externally peer reviewed.

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