Defining and Discussing the Ashley Treatment

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You're listening to a ReachMD XM 157 special series, Children's Health, The Changing Landscape of Primary Care Pediatrics.

Dr. Maurice Pickard

You're listening to ReachMD XM, the channel for medical professionals. Welcome to the Clinician's Roundtable. I'm Dr. Maurice Pickard, your host, 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 the new John B. Francis Chair in Bioethics at the Center for Practical Bioethics in Kansas City. Thank you, Dr. Lantos, for joining us. Great to be here. Today 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 what is now being discussed and being called the Ashley treatment?

Dr. John Lantos

Sure. It's a little more complicated than simply growth attenuation because Ashley's parents actually decided, along with their doctors, to try three different interventions together. to improve what they saw as Ashley's quality of life. The first was to give estrogen treatment, which, as you said, advances the development of puberty and leads to fusion of her growth plate, so she stops growing. The second treatment that was part of what they're now calling the Ashley treatment was a hysterectomy, and her parents suggested that that would save her the... pain of menstruation and the difficulties with hygiene that might be associated with menstruation. And the third component was the removal of her breast buds. Apparently she hadn't yet started to develop breasts. The family, her mother and some maternal aunts, had large breasts and the family was worried that these could be uncomfortable for Ashley, particularly given that she needed a harness to sit upright in her wheelchair. The family also had a history of cysts in their breasts, and they were worried that Ashley might need repeated mammograms and maybe even surgical procedures. So those three put together the estrogen treatment for growth attenuation, the hysterectomy, and the breast bud removal comprised of the Ashley treatment.

Dr. Maurice Pickard

Do you think this was in her best interest?

Dr. John Lantos

That is really hard to say. and is one of the problems, I think, with doing sort of ethics by media. You know, I think clinical decision-making is best done by people who are close and intimately involved with patients, their family members and loved ones, and their personal physicians who have had knowledge and actual contact with the patient and know their medical conditions and know what they're going through. That said, I think this particular treatment is a sort of dramatic departure from anything that's been done for people with similar conditions to Ashley, and in that sense is pretty troubling. Growth attenuation is probably the least troubling of the three. Hysterectomy seems like a rather major procedure being done in a preventive way. That is, nobody knows whether Ashley herself was going to have painful menstruation or trouble with her periods in some other way. And the breast bud removal seems pretty wildly speculative in terms of whether that was going to lead to an improved quality of life. So I'd have to say I really don't know, but I'm doubtful.

Dr. Maurice Pickard

How do you feel about the use of high-dose estrogen in somebody who's probably going to be pretty immobile as far as deep vein thrombophlebitis?

Dr. John Lantos

Well, there's certainly risks to estrogen therapy. It wouldn't necessarily be used long-term for Ashley. That is, it would only be used until she... finished going through puberty, at which point it would presumably be stopped.

Dr. Maurice Pickard

Parents are supposed to always be acting in the best interest of their children. What do you think her parents were thinking as far as the benefits that Ashley might accrue?

Dr. John Lantos

Right. I mean, one of the remarkable things about this particular story is how both her doctors and the ethics committee, as well as her parents, went

Dr. John Lantos

public, as it were, with their justifications and rationale. And when you think about that, they could have done this with complete confidentiality and nobody would have ever known about it. And the question of whether it was good or bad for Ashley would have been a completely private matter. The ethics committee at Seattle Children's Hospital published a paper about it in a major pediatric journal. And then shortly after that, her parents went public on their own blog explaining in great detail what their rationale was for this Their explanation changed a bit over time, but always focused on their perception of Ashley's best interest. The blog received millions of hits, and the people who wrote in were quite polarized in their responses, interestingly. There was one group who found the whole approach of the Ashley treatment morally abhorrent. Many of them came from a disability rights perspective and suggested that this was sort of molding and shaping the bodies of disabled people to suit the convenience of more able-bodied people and found that morally heinous. Many others, though, wrote in and said that they had children or siblings or loved ones like Ashley, many of whom had had difficulties with becoming too large to be able to be cared for at home or having difficult menstruation or having pain associated with various devices that were necessary for their mobility, such as the parents anticipated might be the case with Ashley and her possibly large breasts. And they said, boy, we wish we knew about the Ashley treatment or had thought of it ourselves. It would have really changed both our lives and the quality of life of our child or loved one.

Dr. Maurice Pickard

What are the specific benefits that Ashley's parents thought Ashley would have, though?

Dr. John Lantos

They named two specific benefits. The first was simply being able to keep her at home. They were worried that if she got too big, particularly too heavy, they would no longer be able to take care of her hygiene and activities of daily living. and they would end up having to institutionalize her. So that was their rationale for the growth attenuation. The other rationale for that was to increase her mobility, both within the house but also being able to take her with them on trips and be able to do the transfers from her wheelchair to the car, for example. In terms of the hysterectomy, their stated rationale was that it would spare her the anticipated pain and discomfort associated with menstruation, something that they claimed she would never be able to understand given her severely limited cognitive ability. As a corollary to that, they said that she would never be able to take care of children, so getting pregnant would never be in her best interest. and therefore losing her uterus was not a harm, as it might be for someone who hoped to have children someday.

Dr. Maurice Pickard

It sounds like they had certain fears about Ashley being abused later on in her life.

Dr. John Lantos

Right. Oh, that's another one. Thank you. That more had to do with the breast bud removal. But one of the things that they pointed out was that children with mental retardation or other disabilities do get sexually abused, and that having large breasts might sexualize Ashley in the eyes of caregivers or strangers who might then be stimulated or motivated to sexually abuse her in a way that they might not if she didn't have large breasts.

Dr. Maurice Pickard

There's other examples of parents making decisions that might disadvantage their children, such as dwarf parents wanting children who are dwarfs or parents who are both deaf wanting children who are also deaf. Do you see some comparisons between these issues?

Dr. John Lantos

I think there is a whole set of issues that have to do with what some bioethicists have called designer children. Advances in both things like pre-implantation genetic diagnosis, prenatal diagnosis with the possibility of pregnancy termination, or things like the Ashley treatment, which involve postnatal interventions to prenatal shape a child to some desired image of what parents want them to be are all becoming increasingly feasible. And so the questions of where we're going to draw the lines in terms of limitations on these sorts of parental choices are quite complicated. Some interventions like this are, in fact, widely used today. You don't have to, to the kind of extreme examples that you were talking about, you could just look at things like growth hormone for kids with idiopathic short stature, a treatment that's provided to kids who have no health problem per se, just a cosmetic problem. They're going to be short, and the parents think that it would be in their interest to be taller. One could look at stimulant medication for ADHD as a similar sort of intervention designed to achieve a more socially desirable state, that is, being able to pay better attention to schoolwork in class. Braces for crooked teeth would be another example.

Dr. Maurice Pickard

I was thinking of possibly cosmetic surgery for children who have Down syndrome or surgery. Would you think along those same lines that this might be a common issue?

Dr. John Lantos

Sure. And you can define a spectrum of interventions, some of which are Much more acceptable, I would say. Circumcision is probably the most widely practiced pediatric surgical procedure in America today. It has virtually no medical indications, even though some recent data suggests that in countries with high rates of HIV, it can be protective. But that was never the rationale for doing it. The rationale was always cosmetic in the past. Children who are born with an isolated cleft lip have no health problems associated with that, but the cosmetic procedure makes them more attractive or more normal-looking. I think most people find those two surgical interventions acceptable. Cosmetic surgery for Down syndrome, I think, is more troubling, and some people do cosmetic procedures for other alterations. There's a trend for children of Asian origin to have cosmetic surgery on their eyes to achieve a more European appearance. So, I mean, I think there is a huge spectrum of interventions that are conceptually similar to the Ashley treatment in that they're not strictly speaking medically indicated, but reflect parental desires to have their children look a certain way or act a certain way or... be able to be cared for in a certain way.

Dr. Maurice Pickard

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

Prerecorded program announcer with one overlap fragment

Thank you for listening to a ReachMD XM 157 special series, Children's Health, The Changing Landscape of Primary Care Pediatrics.