Public and Advocacy Responses to The Ashley Tx

Dr. Maurice Pickard

You're listening to ReachMDXM, the channel for medical professionals. Welcome to the Clinician's Roundtable. I'm your host, Dr. Maurice Pickard, and with me today is Dr. John Lantos, Professor of Pediatrics and Associate Director of the McLean Center for Clinical Medical Ethics at the University of Chicago. He is also the John B. Francis Chair in Bioethics at the Center for Medical Professionals. for Practical Bioethics in Kansas City. Dr. Lantos, thank you very much for joining us. Nice to be here. We're going to be discussing the ethical issues in attenuating growth in children with profound developmental disabilities. In 2004, the parents of Ashley, their six-year-old daughter, who suffered from severe combined neurologic and cognitive impairment, decided to accelerate her precocious puberty to minimize her height and weight. Dr. Lantos, could you describe the Ashley treatment to me?

Dr. John Lantos

Sure. Ashley's parents actually elected to have Ashley undergo three different and distinct separable interventions. One was to treat her with estrogen in the hopes that it would fuse her growth plates so she would end up with a shorter final adult height than she otherwise would have if her puberty had been allowed to proceed naturally. So estrogen treatment was number one. The second component of what's now being called the Ashley treatment was a hysterectomy. That was done, according to the parents, in order to spare Ashley the discomfort or pain associated with menstrual periods. And the third component of the Ashley treatment was removal of her breast buds. The parents were worried that she would develop large breasts that would both sexualize her and potentially make her a victim of sexual abuse, as well as cause discomfort when she had to wear the harness that was used to keep her in place in her wheelchair. So those three treatments, estrogen, hysterectomy, and breast bud removal, were the Ashley treatment.

Dr. Maurice Pickard

One of the big conflicts with this particular case, especially after it was reported, I

Dr. Maurice Pickard

was that were the parents really doing this for their convenience or was it for Ashley's benefit? What are the ethical issues in this conflict?

Dr. John Lantos

Well, the guiding principle of all pediatric bioethics is that treatments should be provided only if they're in the child's best interest and children shouldn't be used as a means to an end for somebody else's benefit. In this case, one could imagine that there were both benefits to Ashley herself as well as benefits to her parents. The benefits to her parents would have been ease and convenience for them in taking care of her. The benefit to Ashley, if it was in fact easier to take care of her, would be that she would be able to stay at home with her loving parents rather than be moved to an institutional setting.

Dr. Maurice Pickard

Is this a medical treatment really for a social problem?

Dr. John Lantos

The social problem here is the challenge facing any parents who need to care for a child who is severely disabled. And that is both a medical and a social issue. I believe many kids require ongoing medical treatment. Some require surgery. Some require special feeding devices, special equipment. like wheelchairs or bath chairs, in order to simplify their hygiene, their feeding, or other activities of daily living. So there are certainly medical aspects to this. There are clearly social aspects as well. Many parents work and aren't home during the day. Children like Ashley need 24-hour care or supervision, and so figuring out how to solve That social problem of providing care for Ashley is something that her parents and parents of other children with similar problems face.

Dr. Maurice Pickard

It sounds like it's society's problem, though, to provide caregivers or all the help that the family might need in order to protect Ashley from a surgical intervention. How would you respond to that?

Dr. John Lantos

Well, I'd frame it as a question, I guess, rather than a statement. Is it society's problem? responsibility. Society has some responsibility, I think, to care for its most vulnerable citizens, how far society goes in doing that, and which sorts of social or medical responses it deems acceptable or optimal or forbidden is really where the moral action is in the controversy over Ashley.

Dr. Maurice Pickard

How are the various organizations that are involved in protecting the disabled responded to the Ashley treatment?

Dr. John Lantos

In general, they have been quite vociferously opposed to the Ashley treatment. The most striking response came from a watchdog group for disability rights in the state of Washington. who pointed out that at least one aspect of the Ashley treatment, that is the hysterectomy, violated Washington state law, which states that women or men who cannot consent, who are not competent to make decisions for themselves, must never be sterilized without a court order. And Seattle Children's did not go to court to seek or obtain a court order before doing the hysterectomy on Ashley. When faced with a demand by this advocacy group that they justify their actions or explain why they did what they did. They acknowledged that they were wrong and said they would, in the future, always seek court orders. That was just one aspect of the treatment, though. So I think in the future, hysterectomies won't happen without prospective judicial review.

Dr. Maurice Pickard

If you've just joined us, you're listening to Reach MDXM, the channel for medical professionals. I'm your host, Dr. Maurice Pickard, and my guest is Dr. John Lantos, and we've been discussing the Ashley treatment, attenuating growth in children with profound developmental disabilities. Ashley's treatment took place in 2004, and they went public in late... and then the New York Times published this in 07. The family advocated this for other children. In other words, they began to enter the area of public policy. Do you think this changes things?

Dr. John Lantos

I think it changes it a lot. I mean, I think everybody involved in this case could have kept it quiet, but chose not to. The Ethics Committee at Seattle Children's decided to write a paper about it, and the family decided to go public on their own. blog explaining their rationale framed in terms of what was best for Ashley, but as you say, also implicitly advocating this for other kids. Ashley's blog has received over 2 million hits since the parents went public with it, and many parents of children in similar conditions to Ashley's said they wished they'd heard about the treatment and were going to request it for their children or wish that they'd been able to request it for their children. So there's clearly some politicking going on here that goes way beyond simple concern with what's good or bad for Ashley.

Dr. Maurice Pickard

As an ethicist, do you think this is a return to eugenics and a front to human dignity?

Dr. John Lantos

Return to eugenics and no. Questions about human dignity, I think, are central to this. I say no to eugenics because, one, there's nothing genetic about this treatment. Two, nobody was suggesting that Ashley be euthanized, which was, I think, central to the eugenics movement both here and in Germany in the early part of the 20th century. So, no, I don't think this is about eugenics. I think it is about involuntary treatment of people with severe disabilities. That does raise serious questions about human dignity and about what dignity

Dr. Maurice Pickard

means

Dr. John Lantos

for someone like Ashley. Is she... likely to have more or less dignity if she's able to be cared for at home, say, than if she's cared for in an institution. I don't think the answer to that is straightforward.

Dr. Maurice Pickard

At the other end of the spectrum is people who suffer dementia. They are often treated in a way to make them, shall we say, manageable. They don't have any consent, and often the family makes these decisions. Do you see some comparison?

Dr. John Lantos

I think dementia or terminal illness more generally, I think a common practice for people who are dying these days is what's called terminal sedation that shares all of the ambiguities of the Ashley treatment. That is, it's arguably done simply for what's best for the patient, simply for patient-centered reasons. It also, however, makes the caregiver's lives much easier in the sense that they don't need to witness a long and drawn-out death process that may be accompanied by unpleasant symptoms such as gasping or shortness of breath. So, yeah, I mean, I think advances in medical treatment that allow alteration of disease course and alteration of body shape and habitus for people with disabilities comes up in many different contexts.

Dr. Maurice Pickard

I was really thinking about Alzheimer's that may go on for many years, wearing down caregivers. And once again, if caregivers had the type of societal help, other solutions might be arrived at rather than sedating patients. And that's why I thought there might be a similarity between these two ends of our spectrum in our lives.

Dr. John Lantos

I completely agree. I think it does happen all the time. I think we tend to use chemicals rather than social interventions to address what are fundamentally social problems.

Dr. Maurice Pickard

I want to thank Dr. John Lantos, who's been our guest, and we have been discussing attenuating growth in children with profound developmental disabilities. I'm Dr. Maurice Pickard, and you've been listening to the Clinician's Roundtable on ReachMDXM, the channel for medical professionals. For comments and questions, send your emails to xm at reachmd.com. Thank you for listening.