US case of disabled girl throws up ethical debate. Bob Benson and Martin Ward Platt take their positions on the case of Ashley X

The case of Ashley X has divided public opinion. The severely disabled girl’s parents sought surgery to restrict her growth when she was six-years-old to enable them to  care for her better. Ashley is now nine and her treatment was announced earlier this year. Consultant Martin Ward Platt and Scope’s Bob Benson debate the issues

Martin Ward Platt is a consultant paediatrician and reader in neonatal and paediatric medicine at the Royal Victoria Infirmary, Newcastle upon Tyne:

Ashley X has a severe encephalopathy, so she will never walk or talk. As with many children with severe and complex disability, “cure” is impossible, so caring is all. The principles underpinning her care are to maximise her quality of life, and minimise pain and suffering. Reflecting on this principle should help us to understand her parents’ response to Ashley’s plight.

One criticism of the parental decision was that it was to make life easier for them as carers, and that it was not in Ashley’s best interests. But this is to fall into the trap of considering Ashley in isolation, whereas the truth is that her life is intimately bound up with that of her parents: the quality of her life depends on the quality of theirs. So it would be naive to regard a measure that appeared to help her parents as if it did nothing for Ashley.

Moreover, her siblings also have legitimate needs and demands that only their parents can meet, so the parents have to balance their attention and care between them all, as well as maintain their own relationship. Any physical or psychological manoeuvre that helps her parents to care for her will make life better for Ashley herself. It is not in Ashley’s interests to have parents, or carers, who buckle under the strain.

The most important factor in Ashley’s quality of life is the constant love of her parents, because the intensity of their commitment to her physical care, nutrition and hygiene follows from this love.

Then there is the importance of activities that are outside the home. These are necessary for her parents and siblings too, since isolation is one of the many hazards for the mental health of carers.

The factors that could detract from Ashley’s quality of life include pain from any cause, pressure sores, and anything else that could impair either her immediate sensory experiences or her ability to leave the house and participate in pleasurable activities.

Pain and discomfort are particularly difficult for an observer to estimate. Everything that we have learned in recent years about pain in children has underscored how inaccurately carers and parents alike rate pain; the same applies to estimating pain in people with cognitive impairment.

Prevention is therefore essential. As a girl, Ashley is at risk of menstrual pain because it is common, it can be severe, may last for days, and will recur 13 times a year for about 30 years: so there is a strong case for prevention.

For Ashley, size matters. Every parent of a child with severe motor impairment knows that growth brings significant restrictions. Personal hygiene, transport (both inside and outside the home), participation at any level in any activities: these are all, to varying degrees, diminished by growth; and no amount of physical technology or equipment ever makes up for this. The prevention of growth thus becomes a means to preventing further physical and social disability.

But what of surgery? We must remember that surgery is commonplace in certain types of complex disability. Ashley already has a gastrostomy, and many children with complex disability need operations to assist their care or prevent further disability. These do not attempt to cure the underlying condition; they are palliative, and their purpose is to help both child and parents. For Ashley, a hysterectomy is nothing like the same operation in a full-grown woman. The long-term benefits in terms of prevention of pain and management of body fluids have clear value for her and her parents.

Ashley’s parents have seen what could lie ahead for her, and how action taken now could help her. Theirs was a difficult call. Perhaps, after all, they were right.

Bob Benson is executive director for community development at Scope:

The case of Ashley X has polarised public opinion in the United States and reverberated here because of the unprecedented medical procedures used to limit the growth of a child and the fundamental questions this raises about the human rights of disabled people.

It illustrates the chasm between the medical and social models of disability. The former employs surgery, drugs or other forms of medical intervention to treat an impairment and “normalise” a disabled person.

Not all interventions are inappropriate. However, the so-called Ashley Treatment is an unacceptable intervention which, in effect, makes a disabled child abnormal by seeking to adapt her to fit society to the extent that she is denied the right to grow into an adult.

Public opinion in Britain has largely supported the parents’ decision, focusing on Ashley’s ‘improved’ quality of life. In doing so it has highlighted some of the complex institutional barriers identified by the social model of disability – particularly on attitudes and lack of support.

Scope, which has worked with disabled families for more than 50 years, recognises that this was a difficult situation for Ashley’s parents. However, we believe that employing such extreme medical intervention to drastically inhibit a disabled child’s growth violates her basic human rights and has disturbing implications for the rights and protection of all children.

We are running a campaign to protect children’s human rights and prevent the Ashley Treatment happening in the UK. We are asking the government to take action on one of the precipitating factors for such extreme medical intervention – the lack of support for disabled families.

One reason behind Ashley’s parents’ decision was that they could not afford the care to support her.

We want to see increased funding for practical and emotional support for disabled families. Also, if the government simplified the complex benefits system, this would help more families gain assistance and reduce stress over assessments.

There is no guarantee that the Ashley Treatment could not happen here. A doctor asked to carry out similar medical procedures is likely to refer such a case to the courts where a judgement would be made in the best interests of the child.

Yet who actually represents these – parents, doctors, judges, the child herself, or perhaps there needs to be an independent representative?

Scope is also asking the government to put a clear framework in place to deal with ethical decisions of this complexity which takes the rights of disabled children into consideration, without having to resort to legal intervention.

Assumptions have been made about the cognitive abilities of Ashley, who is said to have the mental capacity of a three-monthold baby. Yet her ability to become bored suggests a level of cognition well beyond that age group.

We understand too little of the brain’s intricate chemistry and its ability to develop even when damaged. Current methods of measuring intelligence, namely IQ tests, are largely inadequate, so we cannot readily dismiss children such as Ashley as mentally passive. Furthermore, we do not know the long-term consequences of procedures such as the Ashley Treatment on the physical and psychological make-up of children.

We believe that the human rights of the child – specifically the right to develop into an adult – are paramount in the Ashley X case. Yet these rights have been glossed over by public opinion on this issue, which has the potential to set an alarming precedent in the way we treat and view disabled people.

Much more needs to be done to adapt society to meet the needs of disabled people rather than physically modifying them to accommodate its weaknesses. We need a wider debate on the Ashley Treatment and its impact if we are to protect the rights of disabled children for the future.

● If you would like to support Scope’s campaign, please visit the website at www.scope. org.uk/childrensrights.

To have your say on if Ashley’s parents were right, vsit our Discussion Forum

This article appeared in the 15 February issueof the magazine, under the headline “Were Ashley’s parents right?”

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