The case of Ashley X

The case of Ashley X has recently received further attention in the medical ethics literature (see e.g. Diekema and Fost ¹ ). In light of this, and in light of the fact that the case was discussed at the 2010 UK Clinical Ethics Network conference in Cardiff, the present paper seeks to remind readers of its salient aspects, revisit some of the standard objections and defences raised against it, consider a novel defence of the treatment proposed by Diekema and Fost, ¹ and also one of the main recommendations made about the case by the Washington Protection and Advocacy System (WPAS).

Ashley's condition and sequence of events

Ashley was born in 1997 (probably in August). Although her birth was uncomplicated, Ashley soon failed to achieve the usual developmental milestones and it became evident that she suffered from severe intellectual and physical disabilities. These were said to be caused by ‘static encephalopathy’ of unknown cause (p. 1014). ² The extent of Ashley's disabilities was – and remains – very profound (see Parents' weblog ‘update January 2010’). ³ She is tube-fed, cannot walk, talk, hold things, sit up or roll. Her parents call her a ‘pillow angel’ because when she is left to lie on a pillow, she remains there until someone moves her. ³ Despite this, she is said to enjoy changes of scenery, listening to music and family affection. She makes sounds when music plays and also moves her arms. She is said to smile and to show some recognition of her parents. She lives at home with her parents and two younger, healthy siblings.

By early 2004, Ashley was six years old and showing signs of premature onset of puberty (p. 1014), ² hence her secondary sexual characteristics were developing at a very early age. Her parents were becoming increasingly concerned about the rate at which Ashley was growing, and putting on weight. They were worried they might not be able to move her around so much, were she to become much heavier. So they discussed the interventions which later became known as the Ashley treatment with Dr Daniel Gunther who at the time was Associate Professor of Pediatrics in Endocrinology at Seattle Childrens' Hospital. One component of these interventions is oestrogen therapy, the purpose of which is to attenuate Ashley's growth, and thus in the longer term help reduce her projected height and weight. This could be administered by derma patches over a period of two years or so. For medical reasons, it was judged that the effectiveness of the oestrogen therapy could be maximized by performing a hysterectomy on Ashley first, and in the eyes of her parents, there were other benefits to Ashley were she to have a hysterectomy – thus, for example, she would avoid monthly bleeding and associated distress and discomfort. Thus the onset of the oestrogen therapy was to follow from the prior performance of a hysterectomy.

The future growth of Ashley's breasts was also a concern to the parents. There was a history of large breasts and of breast cancer in the family (Parents weblog, ³ p. 5 and Diekema and Fost, ¹ p. 31). The parents were concerned that the large breasts would be a source of serious discomfort to her, and they would make it difficult for her to be secured in her wheelchair for trips out; this was because the wheelchair straps lie across Ashley's chest.

It is worth pointing out that, according to the parents' weblog ³ (p. 4) ‘Ashley's Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight’; and Diekema and Fost (p. 30) ¹ confirm that the idea of performing the hysterectomy was also something the parents were keen on: ‘They [the parents] argued that hysterectomy would protect Ashley from… having to deal with monthly bleeding… and allow her to avoid the discomfort of menstrual cramps’.

Because of the obviously controversial nature of these interventions (oestrogen therapy, hysterectomy and breast removal) her parents' wishes and the planned medical interventions were presented for discussion at a meeting of the Hospital Ethics Committee (HEC). The relevant meeting took place on 5 May 2004 by which time Ashley was six years and nine months (p. 1). ⁴ The meeting lasted just over two hours. Ashley, her parents, together with three doctors involved with her care, were all present for the first hour of the meeting in order to explain how the request for the interventions had arisen and the reasons in support of them from the perspective of those most closely involved with the situation. ⁴ The committee members then met on their own for a further hour to discuss the proposed interventions. After their discussion, the committee approved the following interventions: firstly to use oestrogen therapy to limit Ashley's adult height and weight; secondly to remove Ashley's uterus; and thirdly, to remove Ashley's breast buds to prevent their development (p. 1) ⁴ .

The committee recommended that legal advice be sought concerning the hysterectomy due to the fact that, obviously, this would amount to sterilization of Ashley (p. 3). ⁴ In the parents' eyes this was a slightly eccentric request since the primary purpose of legislation which prohibits compulsory sterilization of intellectually disabled women is to protect their reproductive rights. But Ashley was not capable of exercising such a right, and in any case the hysterectomy was simply a means of facilitating the success of the oestrogen therapy – it was thus a ‘side-effect’, as the parents put it (p. 6). ³ Nonetheless, the parents sought legal advice on whether a court order was necessary: ‘… upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability’ (p. 6). ³

The Ashley treatment was then performed in July 2004 (when Ashley was aged 6 years and 11 months). Before performing the surgery, the surgeon checked with both parents and the medical director of the hospital that the procedures were legally permissible. He was informed they were. In addition to the breast removal and hysterectomy, an appendectomy was performed during the surgery since this also was believed to be in Ashley's best interests – after all, if she developed appendicitis she would not be able to communicate this. The oestrogen therapy was successfully completed by December 2006.

In October 2006 Drs Gunther and Diekema published a paper describing the Ashley treatment in the journal Archives of Pediatric Adolescent Medicine. ² Soon after, the case was widely commented on in the media across the world and especially in America and Europe. Much outrage at the interventions was expressed, in particular by groups defending the rights of disabled people. ⁵ However, not everyone was opposed to the treatments: the parents' report receiving many supportive messages; e.g. a mother of a severely disabled daughter is quoted as saying ‘I applaud the parents in America’. ⁶

A formal investigation into the Ashley treatment was conducted by the Washington Protection and Advocacy System ⁷ and published in May 2007. The report found that the hospital failed to follow legal requirements regarding the sterilization of an incompetent person. The report went on to recommend changes in hospital policy and to the constitution of the hospital ethics committee. (I return to these below.) Tragically Dr Gunther went on to commit suicide in October 2007 aged just 49. There was speculation that his suicide stemmed from distress relating to his role in the Ashley treatment, and to the widespread criticisms that ensued.

As mentioned, I will return to discuss the main recommendations of the WPAS report, but for now will turn to list some of the main objections to the Ashley treatment that were raised soon after the details of the case were brought into the public domain.

Main objections to, and defences of, the Ashley treatment

There were five main objections raised against the Ashley treatment (I have discussed this in more detail in a previous article ⁸ but summarize the main points here, together with other considerations raised by referees' comments on an earlier draft of this paper).

The first is that a violation of Ashley's rights occurred, either her rights to bodily integrity or her rights to develop normally. To this objection one can simply respond by pointing out that such rights are not inviolable. They can be overridden in situations when respecting such rights would risk compromising a person's best interests. Thus for example, if removing a toe would save someone's life, in the absence of some very unusual reason not to, it would be reasonable to remove it. So the argument that since Ashley's rights to bodily integrity or normal development were violated, it follows that the Ashley treatment is unethical, is mistaken.

Suppose, instead, it is countered that Ashley's rights of bodily integrity were violated disproportionately; in other words that in some instances rights of bodily integrity can be overridden but only to a proportionate extent. And, moreover, the violations to Ashley's body were of an order disproportionate to the benefits gained by Ashley (if any) from the interventions. To show that the interventions were proportionate would be to show they collectively enhance Ashley's best interests. So this version of the argument concerning Ashley's rights, then reduces to one relating to her best interests. This objection – i.e. that the interventions were not in her best interests – is discussed below.

Another objection is that the treatment involves using Ashley as a mere means to the ends of the parents; in other words that they were the main beneficiaries of the interventions and the purpose of the interventions was to benefit them as opposed to benefitting Ashley herself (‘If it is permissible to alter surgically disabled people for the convenience of their care-givers, this suggests that disabled bodies are objects…’, p. 2) ⁵ . Against this, though, the parents' motives seem genuine, and as seen, the members of the hospital ethics committee agreed they were. The primary consideration in the case appears to have been the best interests of Ashley, not the convenience of her care-givers. So the available evidence points more strongly in support of the conclusion that the interventions were indeed in Ashley's best interests and that, therefore, she was not being used merely as a means by her parents. In addition, if her parents did not really care about her, they could simply have arranged institutional care for her. Of course, it is possible that the parents are merely using Ashley as a means to their own ends – to infantilize her, or to attract sympathy from others – but one can only reiterate that the available evidence does not point to this conclusion. Moreover, those who actually met the parents over a considerable timespan came to the same opinion. The defence of the treatments just given does not entail that in every case parents are the best judges of what is in their best interests. But when that judgement is shared by an independent group of experts, the two sets of considerations combined lend considerable support to the view that Ashley was not being used merely as a means to the parents' ends.

A third kind of objection is that the Ashley treatment consists in a medical response to a social problem. From the perspective of the social model of disability ⁹ the causes of disability lie in the social environment – e.g. in transport systems and public buildings that are inaccessible for wheelchair users. Thus from the perspective of the social model the way to address any problems that arise for disabled people is to look to change the social environment as opposed to looking to perform interventions on the body of the disabled person. In other words, since the causes of disability lie in the social context, the way to ameliorate any problems facing disabled people is to alter that context. What should not be done is to look to make changes to the body of the disabled person – to do that is to illustrate commitment to a flawed model of disability, namely, the medical model. In response to this, it can be pointed out that even if the medical model of disability is false, in Ashley's specific circumstances only increased levels of help from social services will improve Ashley's predicament; and even then it might not do – if perhaps the helpers are uncaring or abuse Ashley. The persuasiveness of the case for the social model tends to rest on the paradigm case of a paraplegic person who is excluded from public life because of the wheelchair-unfriendly nature of the social environment. Change that environment and the exclusion is ameliorated. But there is no analogous change available to transform Ashley's life. So once again this objection is not compelling.

The fourth objection disputes that the interventions were in Ashley's best interests. It has to be conceded at the outset that in the absence of the views of the person concerned, it can be incredibly difficult to determine just what course of action is in a person's best interests. In the Ashley case it is not obvious that the interventions go against her best interests. An impartial ethics committee agreed they were in her best interests, and her parents thought this too. Moreover, no compelling argument has emerged since the procedures took place to show they ran counter to her best interests. Of course, it is possible that the interventions turn out not to be in her best interests. But the committee could only assess the situation on the basis of the evidence before them – including the reports from the relevant clinical specialisms. And, if one believes the parents' account of Ashley's condition in 2010, the interventions achieved their intended aims. One might argue that a further forum for evaluation of the question of whether the interventions were in Ashley's best interests should have been pursued – e.g. the courts. But against this, one wonders what source of relevant considerations could be illuminated by discussion of the case in court – perhaps greater consideration of the public interest, or indeed as Shakespeare puts it, ‘the wider symbolic messages that these practices send to disabled people’ (p. 2). ⁵ But it is reasonable to say that Ashley's interests should not be impugned by such considerations, otherwise it seems that she is being used as a means to preserve the interests of disabled people – in so far as a therapeutic option is to be denied her to protect the interests of third parties.

A fifth objection is the most interesting in my opinion. There are two aspects to it, one against the Ashley treatment, and the other which argues that the treatments do not go far enough – in other words that more should have been done to promote Ashley's wellbeing in the form of even more drastic surgery. What is common to them is agreement that a general moral principle lies behind the decision to perform the Ashley treatment which has roughly the following form: ‘it is justified to alter the body of a permanently incompetent person without their consent, providing it can be shown to be in that person's best interests’. It seems to follow from this that if even more drastic alterations to Ashley's body can be shown to be in her best interests, then it would be justified to perform them. A critic who believes the Ashley treatments to be morally wrong might argue as follows: the fact that the moral principles which justify the Ashley treatment also justify even more extreme interventions such as multiple amputations, constitutes a reduction ad absurdum of those principles, and therefore highlights the immorality of the interventions.

A problem with arguments of this kind in the moral domain is that any force they might have depends upon others sharing the moral intuition of the person who believes the conclusion to be patently absurd. If someone does not share those same intuitions they need not find the supposedly absurd conclusion absurd at all. So this argument against the Ashley treatment need not be found compelling by those who fail to share the intuitions of those opposed to them on these grounds.

With regard to the criticism that the treatments do not go far enough, it can be argued that the moral principle identified earlier (‘it is justified to alter the body of a permanently incompetent person without their consent, providing it can be shown to be in that person's best interests’) shows that the treatments in the actual Ashley treatment fail to respect this general principle to a considerable extent. Thus for example a case of the following kind may be made. The main aim of the interventions is to promote Ashley's wellbeing. The weight-reducing measures are essential to achievement of this goal. So, if reductions in Ashley's weight promote her wellbeing (by making her lighter and easier to move around, etc.) further options were available in pursuit of that goal which were not taken up, and which should have been taken up; therefore the measures undertaken in the Ashley treatment do not go far enough, it may be said. Hence, removal of Ashley's arms and legs should have been included as part of the treatment, the goal of which, after all, is to promote her best interests by reducing her weight.

Diekema and Fost responded to this criticism in a paper published early in 2010. They wrote:

In addition to the morbidity and risk of the procedure itself, it is also not trivial that multiple amputations would create major problems with intravenous access, which Ashley will almost certainly need throughout her life. Finally, amputation would also change a person's appearance, and the public response to that appearance in ways that are very different from growth attenuation' (p. 37). ¹

So we have two objections here to the criticism that the Ashley treatment did not go far enough. First, Ashley's limbs cannot be removed because in doing so one removes access to the major veins and to do so would be to compromise her overall wellbeing. Thus it would be a mistake to suppose that Ashley's overall best interests could be enhanced by such amputations. The second objection is that to remove all her limbs would have an aesthetic effect. Although not stated explicitly in the quote, the clear implication is that multiple amputations would provoke a negative reaction by those people who see her.

What is interesting about this response to the criticism under discussion is that no attempt is made to provide an ‘in principle’ objection to the suggestion that Ashley's interests might have been promoted to greater extent by multiple amputations. So if there were not these other medical reasons against removal of all Ashley's limbs, then multiple amputations could conceivably be justified. I suspect that many would be surprised by this response and would have been expecting to hear some kind of ‘in principle’ case against multiple amputation in the absence of pathology. This is because, pre-theoretically at least, it seems morally repugnant even to consider that such a course of action could conceivably be justified. And one might think that even to entertain the thought that further amputations could be justified is to have taken a step too far outside the moral domain – one would have had ‘one thought too many’ (p. 18) ¹⁰ so to speak. Also, apart from this, one could argue that even after multiple amputations intravenous access would still be possible through other available veins.

The second response to the criticism that multiple amputations may have better served Ashley's interests draws on aesthetic considerations. It is difficult to assess how much weight can be attached to these. A number of responses are available. One is that the responses of people outside the family to Ashley's appearance should not enter into considerations about what course of action is in her best interests (recall the earlier endorsement of this point). Another is that such reactions might not necessarily have any adverse affect on Ashley or her parents. If her parents are upset by adverse reactions, they could cover her body while she is out of the home. More strongly one could claim that people should be more accepting of diversity, and therefore that the prospect of adverse reactions to Ashley's appearance should not stand in the way of what lies in her best interests. A last response is, again, to register the fact that there seems something morally repugnant about even considering such measures and possible defences of them from a moral point of view – indeed one seems to be entertaining ‘one thought too many’ in Williams's memorable phrase. ¹⁰ However, in my view there is reason to be sceptical about the moral force of such sentiments. Recall that such deliberations are indeed routinely, and justifiably, undertaken by surgeons who have to think carefully about which parts of the human body need to be cut or removed and to what extent, etc. in order to promote the best interests of their patients. Therefore, not too much weight should be accorded to the sentiments of moral repugnance which are aroused by the kind of discussions that have been engaged in here.

Before moving on to discuss the response of the WPAS to the Ashley X case, one might wonder whether the so-called ‘precautionary principle’ can be invoked to show that the burden of proof, so to speak, lies upon those who want the Ashley treatment, as opposed to those who want to deny the treatment to Ashley. As the discussion has been presented so far, the presumption is that the burden of proof lies on those who take refusal of the interventions to be the most ethically justifiable position. Given this, the onus is on them to show why they should not be undertaken. However, the precautionary principle is standardly invoked when considering some new developments in science, which could lead to very serious, currently unforeseen, harms. ¹¹ However, we need to remind ourselves that none of the interventions in the Ashley case count as radically new, or experimental; all have been safely performed many times. So I would argue that this is simply not the kind of context for consideration of invoking the precautionary principle. That may be appropriate in new, experimental procedures which can cause widespread unforeseen harms on a grand scale. But the Ashley treatments are not like this at all; they are not on a par with nano-engineering, production of genetically modified crops and the like.

Having looked, then, at the main objections to the Ashley treatment, it seems clear that none of them provides a compelling argument against – unless, that is, one can find some way to articulate and justify the attaching of moral weight to the feelings of moral repugnance that are aroused by the whole discussion and I have indicated that this does not look like a promising strategy. I propose to turn now to outline the rationale of the hospital ethics committee.

What did the hospital ethics committee think?

According to the minutes of the meeting, ⁴ 11 committee members attended, and as mentioned already, they spent just over an hour with Ashley, her parents, and three of the medical team involved asking questions about the proposed interventions. Such questions included ‘How will limiting linear growth help Ashley?’, ‘Is the hysterectomy really necessary?’, ‘Who will benefit, Ashley or her parents?’

The discussion was described as ‘thorough and painful’ (minutes, p. 3), but a consensus in favour of the interventions emerged. As far as one can tell from the minutes of the meeting, all the proposed interventions were assessed in terms of their risks and benefits to Ashley. Thus the risks attached to undergoing surgery for the hysterectomy were thought to be outweighed by the benefits of avoidance of the discomfort and distress which would be likely to be part of the menstrual cycle.

The committee's decision is expressed as follows:

It was the consensus of the committee members that the potential long-term benefit to Ashley herself outweighed the risks; and that the procedures/interventions would improve her quality of life, facilitate home care, and avoid institutionalisation in the foreseeable future (p. 3, minutes).

It can be seen, then, that following careful weighing by the committee of the risks and benefits to Ashley, a consensus emerged in support of the interventions. Also, what should be noted is that the committee's primary consideration is the benefit to Ashley herself. Although the judgement is expressed in terms of ‘weighing’ considerations, this is of course a metaphor given that it is perhaps impossible to quantify competing moral considerations. But in the absence of evidence to the contrary, it seems reasonable to conclude that the majority of the committee was indeed of the mind that the Ashley treatment was morally justified, and to infer further that the decision stemmed from very careful consideration of the available evidence. Given that no compelling case against the treatment has emerged since it was performed, it is again reasonable to infer that there was nothing of pressing moral relevance which should have been considered by the committee but which they omitted to consider.

It should be added that the parents were advised to get confirmation of the legality of the hysterectomy as this, of course, would involve the sterilization of an incompetent intellectually disabled person. Perhaps it is also worth noting that although the discussion lasted an hour, and was described as ‘thorough and painful’, the minutes of the meeting comprise just three A4-size pages.

What were the main recommendations of the WPAS report?

As far as the HEC is concerned, the main change that was recommended to them was that they add to the committee ‘one or more individuals who can advocate for individuals with developmental disabilities’ (p. 27). ⁷ This was to be supplemented by other changes in hospital policy regarding the treatment of developmentally disabled people; in particular, it was stipulated that it must be mandatory to have legal authorization before performing any hysterectomy on an intellectually disabled person.

The report ⁷ concludes:

Guaranteeing procedural due process for all people facing the ‘Ashley treatment’ or other growth-limiting medical interventions will not, however, answer the question of whether the ‘Ashley treatment’ should be done (p. 27).

Thus the report leaves open the possibility that the Ashley treatments may have been morally justified, and certainly does not claim that the treatments were unjustified. Moreover, Diekema, one of the people most closely involved in the case, wrote recently that such interventions should be available for future ‘carefully selected patients who might benefit from them’ ( p. 30). ¹ So it should be said that the main report conducted in the USA in the aftermath of the case did not conclude that the treatments were unethical.

In this final section of this paper, I propose to return to the recommendation made in the WPAS report regarding the constitution of the HEC. According to this recommendation, the committee should include some who can advocate for people with developmental disabilities. Rather than simply accept this, one could ask why this is necessary? Why would the inclusion of such a person lead to better decisions, or at least better-informed decisions? Also on the face of it, one could offer a fairly swift reply in relation to the specific case of Ashley – namely, that her parents were there to advocate her cause on her behalf. To say this is not, naively, to assume that all parents are good advocates for their offspring; clearly this is not always the case. But in this instance the available evidence supported the claim that they were reliable advocates for Ashley's best interests, and there was no evidence that they were not.

Would the presence of someone within the committee playing an advocacy role for Ashley have made a difference to the nature of the discussions? Are there certain aspects of the situation that such a person would have been able to identify, which others present would not? Or would they have given greater weight to some of the factors that were raised than were given by other committee members? It is certainly not obvious that such an advocate would have made a difference to the nature of the discussion.

The philosophical rationale for the inclusion of a person able to represent the interests of people with intellectual disabilities stems from so-called ‘standpoint epistemology’. ¹² The idea here is that people with a certain kind of life experience are likely to know more about a specific phenomenon as it is encountered from their specific perspective. Thus it may be said that women know more about sexual discrimination than men by virtue of the fact that they are more likely to have experienced it. So, it may be continued, a person with multiple sclerosis is likely to know more about life with that condition than someone who has not experienced living with that condition. So it looks plausible in these cases that the person with a specific kind of experience will have access to a source of relevant knowledge which others without that experience might lack.

However, even if this proposal is plausible in the kinds of examples just given, it does not follow it will apply in the case of Ashley. This is because ‘standpoint epistemology’ can offer us little when we are faced with the lives of people who are as disabled as Ashley, as they are unable to tell us what they want or to describe how life seems from their perspective. We can ask the parents and carers of such people what it is like to live with a person with such a severe disability, but the parents' perspective was indeed included in the case discussion.

So, it is certainly not clear that a different decision would have been reached if the committee had included a member whose specific role was to advocate for people with developmental disabilities. Moreover, given what was said about the rationale for inclusion of such a person from the perspective of standpoint epistemology, it is not clear that the inclusion of such a person is motivated by that approach to epistemology.

Further, there is a possibility that having a member with a specific disability-rights agenda might actually impede the prospects for a decision to be taken in the best interests of the person whose interests are the subject of discussion in the meeting. To give an illustration of what is meant by this controversial claim, recall above the objection to the Ashley treatments which arises from a social model of disability. The objection was that the treatment provides a medical answer to a social problem, so the treatment is fundamentally misconceived. From a disability-rights perspective this is indeed the case. Suppose, then, the advocate placed the broader disability-rights agenda above the interests of Ashley as an individual. That person would then be failing in their advocacy role for Ashley as a specific person as opposed to Ashley considered as a member of a disadvantaged group. What this point shows also is that the aim of the committee is to make the best decision for the patient. This is true irrespective of what broader group the patient belongs to, whether they are women, men, disabled, able, have a history of a specific medical condition or lack such a history. The presence or absence of such characteristics in a committee member entails neither their competence nor their incompetence to make good decisions, identify relevant moral considerations and weigh such considerations appropriately.