Pillow Angel Ethics Essay Format

Diekema and Gunther’s patient was a 6-year-old girl who could not walk, sit or hold her head up without assistance. She was fed exclusively through a gastrostomy tube. Although she couldn’t speak, she often smiled and made noises and expressed pleasure in the company of her siblings. Her parents — worried that their daughter’s continued growth would restrict her ability to join family trips, swing in the backyard, take baths or cuddle in their arms — formed a plan with Gunther to limit her adult stature. After Diekema and a hospital ethics committee gave their approval, Gunther administered the estrogen estradiol, which effectively reduced her future predicted height by approximately 13 inches.

Additionally, the child — unidentified in the original paper but soon known as Ashley, her first name, or “Ashley X” — underwent a hysterectomy to preclude the discomfort of painful menses as well as the uterine bleeding that can accompany estrogen in high doses, and the removal of her breast nodules to forestall the growth of breasts. For the treatment they called “growth-attenuation therapy” to be most effective — resulting in a shorter and lighter child — a careful monitoring of calories was also required.

The “Ashley Treatment,” as the combined procedures were soon referred to, sparked controversy. Nearly 60 percent of the respondents to one MSNBC poll seemed to believe that the extreme measures were justifiable, if shocking. Some protested bitterly, however. The advocacy group Feminist Response in Disability Activism picketed the American Medical Association and printed Gunther’s and Diekema’s office addresses and phone numbers on their website, calling them “our targets.” According to the disability activists’ criticism, growth-attenuation therapy and its associated procedures violated Ashley X’s rights to privacy and freedom from unnecessary bodily manipulation, which are the sorts of things the Americans With Disabilities Act, the Rehabilitation Act and even the 14th Amendment were supposed to protect people from. Her care did not constitute a “treatment” or “therapy” at all, they said, because it did not treat an illness. A statement issued by the American Association on Intellectual and Developmental Disabilities claimed that “this practice, if judged acceptable, will open a doorway leading to great tragedy.”

In response to the outcry, the legal-advocacy group Disability Rights Washington investigated Seattle Children’s Hospital and concluded that it had broken state law by sterilizing a disabled minor without a court order. No charges were brought against Seattle Children’s, but the hospital acknowledged having erred and said in a statement: “We are instituting safeguards so that something like this never happens again.” Since then it has not performed growth-attenuation therapy on a child with a developmental disability.

Still, the treatments were now a known option for the families of children with profound disabilities. They congregated on Pillowangel.org, a website and private message board maintained by Ashley’s parents, who have never made their names public, identifying themselves only as “Ashley’s Mom” and “Ashley’s Dad,” or AM and AD. (Their site’s name comes from the endearment given to Ashley and other children like her who spend most of their hours propped up by pillows in bed.) The carefully screened message boards became a supportive oasis in an online environment where, one Washington State mother told me, “parents looking for information about this are made to feel like monsters.”

For years following the controversy at Seattle Children’s, Diekema was unsure how many children had been through growth-attenuation therapy, because no registries track the practice. But then last summer, the Pediatric Endocrine Society published a survey of its members in The Archives of Diseases in Childhood indicating that at least 65 children have received the therapy. (The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal.) And by many doctors’ accounts, the demand for it is increasing even as doctors prefer not to talk about the practice publicly. “You might wonder if we’re getting underreporting,” says David Allen, a co-author of the survey and head of the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital. “The survey response rate was only 30 percent. We have no good numbers at this point.”

To begin to understand why a parent would choose to disrupt the growth of a child, it helps to know what goes into caring for someone with severe disability. Sandy Walker was a member of the Seattle Growth Attenuation and Ethics Working Group, a panel of concerned parents, medical experts, scholars and bioethicists who developed ethical and policy guidelines for health professionals. In her 50s and physically fit, Sandy has a 20-year-old daughter, Jessica, who has quadriplegia, is nonverbal and needs assistance with all daily activities. In good overall health, Jessica is 5-foot-3 and weighs 95 pounds. She requires either a two-person transfer between bed and wheelchair or a Hoyer lift, a sling-like hanging chair on wheels that moves people in and out of beds, chairs and bathtubs. But the Hoyer is not meant for use in the shower, where Jessica is propped on a stool, so Sandy and her husband, James Walker, rely on two-person lifts that are very difficult when their daughter is wet. “There are many things we can no longer do,” Sandy says, “or perhaps we could do them, but as she gets older, we also get older, and we choose not to.” This means no more hikes in the mountains or swimming at the public pool and the beach.

About nine years ago, the family went to Disneyland. It was still relatively easy to fly with Jessica then, but upon landing she vomited on herself and Sandy. Sandy made a mat from clothes in her suitcase, lay her daughter down in a handicapped stall at the airport and wiped off both of them. “But then I realized the terrible truth,” Sandy says. “I had to lift her, by myself, from the floor to the chair — no easy feat. If ever I wished for a shorter girl, it was then.” Walker believes that if growth-attenuation therapy had been available when Jessica was a small child, she and James would have considered it. “I’ve been shocked by how the disabled community has reacted to it,” she says. “These people speak of the ‘perspective of the disability community’ as though we are not part of it. It makes us feel disenfranchised by the very organizations that were put in place to protect Jessica and our family.”

Cindy Preslar did not want to end up in a similar situation. “I knew we would be his caregivers forever, no matter what,” she told me. “But you think about: My goodness, when my kid’s 15 years old, how am I going to hold and move him?” When she first learned about growth attenuation in a magazine article, shortly after Ricky’s diagnoses, Cindy felt a wave of relief: The idea that Ricky could get the therapy one day was comforting. But she mentioned it to no one. “We’d go to his doctor appointments, then just go on,” she says. She finally brought it up with her husband, Matt, when Ricky was about 2. As it turned out, Matt had seen a reference to the Ashley case on “Law and Order: SVU” and had been waiting for the right moment to bring up the subject himself. They readily decided the therapy was the right thing for Ricky.

The Preslars searched for months before they found a willing doctor, Michael Kappy at Children’s Hospital of Colorado, in Aurora. Kappy had never administered growth-attenuation therapy, but he was an author of a paper justifying and laying out guidelines for its practice. The Preslars flew with Ricky to Colorado twice, first to consult privately with Kappy, then to meet an ethics committee convened by the hospital to approve Ricky’s treatment. Cindy found the ethics-committee members, especially one mother who had had a daughter with disabilities, to be immediately sympathetic. “The meeting lasted an hour or two,” she says. “And Dr. Kappy said: ‘I’ll call it in. What pharmacy do you use?’ And that was it.”

Kappy initially prescribed 2 milligrams daily of estradiol, but on the private message boards at Pillowangel.org, Cindy learned that there were no regulations on how much estrogen physicians could prescribe off-label; other children were getting much higher dosages than Ricky, and their bone age (measured by the degree to which the growth plates are closed) was increasing more rapidly, which would lead to an overall greater reduction in height. She persuaded Kappy to increase the dosage incrementally over the next three years to 8 milligrams daily. Kappy told me that he closely monitored Ricky “to be sure we weren’t going to do him harm.” The higher doses, he said, were “quite effective in speeding up the rate of skeletal maturation.” Within six months, Ricky’s bone age jumped three years, up to that of a 6-year-old. When he began to develop breast tissue, a side effect of the estrogen, Kappy told Cindy that Ricky could have his breast buds removed for cosmetic purposes.

The Preslars declined the surgery as unnecessary. Ricky was weaned off the estrogen when his bone age reached about 15 years, instead of the recommended 16, because his toes were turning purple. This was a symptom of thrombosis, a side effect of estrogen treatment. Multiyear studies on those lanky teenage girls showed an increased risk of mild hypertension, ovarian cysts, amenorrhea and hyperprolactinemia, an excess of prolactin in the blood. But because growth-attenuation therapy for very young children is so new and unstudied, its prolonged effects on their bodies remain unknown.

For parents seeking to restrict the growth of a child, the prospect of being able to provide care at home for many years is a strong motivating factor. Yet despite the fact that three out of four people with intellectual and developmental disabilities live with a family member, the assumption that smaller people actually get better care at home — or in any setting, for that matter — is not supported by empirical evidence; no studies have correlated body size with quality of life. There are only the arguments of parents in opposing camps.

The pediatric bioethicist Nikki Kerruish, a senior lecturer at the University of Otago in New Zealand, has analyzed the perspectives of parents who support the therapy and those who oppose it. In the journal Cambridge Quarterly of Healthcare Ethics, she explains that the very definition of “quality of life” is disputed between the groups. Parents who object to curbing growth prioritize their child’s pleasure and comfort but never at the cost of higher-order concerns like bodily integrity and self-determination. They equate “growing” with “thriving.” No amount of cognitive impairment justifies nonessential medical treatment; growth attenuation is always inappropriate. Conversely, parents who back growth attenuation tend to believe that maximizing pleasurable experiences and minimizing unpleasant ones is the best way to serve a child with extreme disabilities. If this can be achieved by caring for that child as if he or she were a young infant, then that is entirely appropriate.

“My daughter is trapped in a wheelchair all her life, and she’s more comfortable” being smaller, says Nancy, who believes her daughter, Nykkole, may have been the second girl ever to undergo the three interventions that make up the Ashley Treatment. (She asked for their last name not to be published to avoid criticism.) Nancy and her husband began caring for Nykkole as foster parents in her infancy, shortly after she received a diagnosis of brain damage resulting from shaken-baby syndrome and was removed from her teenage parents’ home. Nykkole, now in her late teens, is thought to have a developmental age of 4 to 6 months. “She’s going to be a baby all her life in her brain,” Nancy says. “She smiles and laughs and loves music and lights, but she can’t talk, she can’t tell us what’s hurting her: whether her hips are torqued a little one way, whether a mosquito’s biting her. I didn’t want to add to that PMS and cramps and all that stuff.”

In 2007, after her adult son heard a story on the radio about the Ashley Treatment, Nancy decided to pursue it for Nykkole. “I was [also] thinking about people taking care of her for her whole life, and I just didn’t want to think about how vulnerable she is,” Nancy told me. Like Ashley’s parents, she believed that if her daughter had no breasts, she would be less likely to be a target of sexual abuse. Before undergoing growth-attenuation therapy, Nykkole was given both a hysterectomy and a bilateral mastectomy at the University of Minnesota Masonic Children’s Hospital. When the family then met with the hospital’s ethics committee to discuss Nykkole’s growth attenuation, Nancy recalls, “We brought her out of her chair and into our laps, and said: ‘This is why we want to do this. She needs to be in our laps for our whole life.’ ”

This is the sort of reasoning that frustrates Eva Kittay, a professor of philosophy at Stony Brook University who has written widely about the Ashley Treatment, disability ethics and her experience raising Sesha, a daughter now in her mid-40s, who has multiple physical and cognitive disabilities. Kittay remembers the anxiety she felt in Sesha’s infancy that life with her daughter would only get harder with the passing years. In fact, she says, they have achieved a rhythm in their lives, with Sesha dividing her time between the family home on the weekends and a residence and school for people with disabilities on weekdays. Kittay says that she hopes new parents considering growth-attenuation therapy will not rush into an intractable decision while still coming to terms with a child’s diagnosis of intellectual and developmental disability.

“You cannot halt things, keep them children,” Kittay told me. “You have to think about your family changing. You will have other needs. They will have other needs.”

Philip Zeitler is chairman of the Department of Endocrinology at Children’s Hospital, in Aurora, which has overseen growth-attenuation therapy for about 20 children. He considers the treatment to be as ethical as the practice in his field of withholding medicines that suppress precocious puberty, a medical condition that causes maturation to start too soon and leads to reduced stature. Allowing precocious puberty, which happens to be common in children with disabilities, to proceed without intervention is like letting a kind of natural growth attenuation take place. Zeitler would like to see the therapy come “out of the shadows” by becoming the focus of empirical studies or at least an informal national registry where doctors could report cases and compare outcomes. “Given the controversies here,” he asks, “is it unethical not to be studying it?” That is, if parents are free to seek growth-attenuation therapy and some physicians are accommodating them, shouldn’t we understand more about its efficacy and long-term effects?

Yet greater scrutiny also brings the risk of regulation. “It’s probably not high on the F.D.A.’s radar, and to be frank, I would think that would be a terrible thing if it were, because it would create new barriers for these families,” Zeitler says. “The F.D.A. is going to say, ‘You shouldn’t be doing this unless there’s outcome studies.’ It would be ideal if we had outcomes, but they take 10 years. And meanwhile, what about all these families who are earnestly looking for help?”

Families already face difficulty finding hospitals and doctors sympathetic to growth-attenuation therapy. Because of his early involvement with Ashley X’s care at Seattle Children’s Hospital, Diekema occasionally gets calls from parents. He advises some of them — like one parent who wondered if the therapy might make an autistic child’s violent outbursts more manageable — against pursuing treatment. Diekema usually refers appropriate candidates to the network of families on Pillowangel.org. Physicians and hospital ethicists also call him in search of guidance. He estimates that as many as 10 pediatric hospitals have at least presented cases to ethics committees, but he doesn’t know those outcomes. “They don’t really want anybody knowing what they’ve decided,” he told me, “because they don’t want it publicized.”

Part of that reluctance, Diekema believes, stems from doctors’ unwillingness to be identified as supporters of growth-attenuation therapy. A year after Diekema and Gunther published their paper, Gunther committed suicide in his home. A flurry of speculation ensued: Had the criticism been too great? Had he regretted his actions? Diekema and Gunther’s family believe his death was brought on by depression, not by the negative attention from the Ashley X case. All the same, Diekema says, he thinks many physicians decided that prescribing growth-attenuation therapy “wasn’t going to be worth it.”

For those endocrinologists willing to administer the therapy, Diekema has some advice: Do so only in consultation with a developmental specialist who has evaluated the child. Because the treatment is recommended only for children with the lowest cognitive function, Diekema says that “anyone doing this has to think hard about ‘How sure of the prognosis are we?’ Not everybody is very good at parsing out what’s a communication problem and what’s actually going on in the brain. And I do think you need a fair amount of certainty there.”

Can such certainty ever be guaranteed? A significant body of research shows that the intellects of people with severe motor impairments can be grossly underestimated. What’s more, the minds and abilities of many people with cognitive disabilities evolve over their life spans, especially when they are given means to communicate. Karrie Shogren, co-director of the Kansas University Center on Developmental Disabilities, believes that growth-attenuation therapy is too often administered without consulting developmental specialists. “One of my major concerns,” she says, “is that places where this is being done might tend to be places that don’t have strong disability affiliations or support.” She also questions the use of outdated evaluation criteria, like mental or developmental ages, in assessing candidates for treatment. These measuring sticks can misrepresent a person’s capacity for understanding, especially someone who lacks speech and is severely restricted in movement. But whatever the level of impairment, Shogren says, “there’s an inherent conflict between the Ashley Treatment and the current way of thinking about disability,” which is expressed by the modern mantra of her field: Presume competence. In that light, medical treatment can never be justified on the grounds that a child “does not have the potential to take on adult roles.”

At its core, the battle over growth attenuation is a battle between old and new ways of thinking about disability: the old “medical model,” which regards disabilities as a problem to be fixed, and the new, “social model,” which frames disability as a natural facet of the human experience. The social model promotes self-determination for those who have even the most complex disabilities; society should adapt to them, not the other way around.

Ricky Preslar is now 9. Two years after completing growth-attenuation therapy, his height has stabilized around 43 inches. He is still nonverbal (unless you count his easy laugh), but in the past year, Cindy says, he has shown signs of purposeful movement, an important developmental milestone, by using a head-motion-activated assistive-communication device to stop and start videos at his school for the visually impaired. He can move around the kitchen in a gait trainer and goes to hippotherapy (a kind of physical therapy on horseback) once a week. Cindy’s goal this year is to run a marathon while she and her husband push him the whole way. She says that Ricky, who is now 43 pounds, is beginning to seem conspicuously smaller and lighter than many of his peers at school. The Preslars have never regretted their decision to attenuate Ricky’s growth. For Cindy, there are times — like when she recently strained her back — when she is particularly grateful that her boy is, and always will be, small.

A couple of years ago at a Parents Reaching Out conference at Ricky’s school, Cindy and Ricky’s caregiver, Jessica Covak, were chatting with the parents of a boy in Ricky’s class when the father expressed sadness at the prospect of not being able to pick up his child when he got too big. Cindy felt tears welling in her eyes, and the words just came out.

“You guys might think this is weird, but Ricky’s done growing, pretty much,” she said. She explained about the effect that high-dose estrogen has on growth and offered to give them more information, if they were interested. The couple stared at Cindy, jaws dropped, then found an excuse to wander away.

“Did I freak them out?” Cindy asked Jessica.

“Yeah, I think you did,” Jessica answered.

Cindy didn’t mind too much. “Every child is different,” she says. “Every family does the best they can.”

Continue reading the main story

On January 3 of this year the parents of a girl with static encephalopathy, a disorder that leaves her unable to move and with the cognitive capacity of an infant, announced on a blog that they had been using hormones to stunt the growth of their daughter for medical and quality-of-life reasons. [More details are available via the original news report of the story.] The resulting, and very public, debate--much of it carried out in the comment thread of the original blog--has ranged from support for the parents to accusations of eugenics and worse.

In order to cut through the noise, we asked three bioethicists--doctors not unlike those who, as members of a medical ethics board, authorized the treatment in the first place--to relate their professional opinion of the case.

All three bioethicists came down firmly on the side of the parents and the decision of the original ethics board--but with a few reservations. Their discussion ranged from issues of privacy raised by the media frenzy surrounding this case to the question of whether or not this intervention is a technological fix for a social problem.

What follows is an unedited transcript of an e-mail dialogue that took place Friday, January 5, between the following participants:

Joel E. Frader, MD, is division head of general academic pediatrics at the Children's Memorial Hospital, Chicago, as well as a professor of pediatrics/medical humanities and bioethics at Northwestern University's Feinberg School of Medicine.

Norman Fost, MD, MPH, is a professor of pediatrics and bioethics as well as director of the program in bioethics and vice chair of the Department of Medical History and Bioethics at the University of Wisconsin Medical School.

Benjamin Wilfond, MD, is director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and a professor at and chief of the Division of Bioethics, Department of Pediatrics, University of Wisconsin Medicine.


Joel Frader, 9:03 AM EST January 5, 2007

Drs. Gunther and Diekema in Seattle reasonably defend the decision to support, and act on, the parents' request to limit growth of the six and a half year old girl with severe cognitive impairment by administering drugs to close the growth plates of her bones. (cf. Attenuating Growth in Children With Profound Developmental Disability Gunther DF, Diekema DS.)

Parents and other care providers for entirely dependent patients with such serious disabilities do face physical challenges when the patients grow large. One encounters difficulties lifting and turning the patients for routine care--including bathing, prevention of skin breakdown, exercises to preserve joint mobility, and so on. I find it difficult to argue that this child and similar patients benefit merely from reaching their genetic growth potential.

In addition, reducing the demands and stress on caregivers serves the interests of the patients. I have more difficulty with measures such as hysterectomy--an intervention with more risk and more discomfort to the patient--in order to avoid having to deal with monthly periods once, or if, menstrual cycles begin. Absent excessive bleeding uncontrollable by medical means, once menstruation begins, hysterectomy seems hard to justify. Also, some family members and health care professionals seem to believe that hysterectomy limits the potential for sexual abuse by others, though one can find no empirical evidence to substantiate that fear.

In the editorial response to Gunther and Diekema, Brosco and Feudtner correctly note that measures such as the one applied to Gunther's patient in some sense miss the point. That is, our society generally provides insufficient support for persons with disabilities and those who devote time, effort, and resources to caring for the patients. A more generous society would make sure caregivers have assistance devices and other help necessary so that the physical, social, and emotional work of providing care does not become overwhelming. I agree with that. However, in the absence of an adequate system, the measures taken to limit the Seattle patient's growth seem reasonable and well within the scope of caring parents' authority to undertake.

Joel


Norman Fost, 11:08 AM EST

I'd like to start with the privacy issues, since I am generally uncomfortable when ethicists or the general public criticize individuals who are experiencing a medical/ethical crisis. Part of this is simply a concern for privacy. Part of it is because the press accounts of the medical facts are often incomplete or inaccurate. And part of it is because I wouldn't want my judgments about medical care in my family subject to national or international scrutiny, privacy aside.

These concerns are mitigated in this case because the father has chosen to put his family's story in the public domain, with a website and a link to a blog that includes harsh criticism as well as support. He has been careful to not reveal his name. He does include a family photo with the faces partially blocked, leaving them identifiable at least in their local community. He says the reason for creating the website was to "share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden "Pillow Angels"; second, to address some misconceptions about the treatment and our motives for undertaking it." He has been spectacularly successful, as the website has received over one million hits in 3 days, and thousands of messages have been sent by email or to the blog site.

I find his reasons, and those of Gunther and Diekema, for pursuing the treatment plan they did very persuasive. There are compelling arguments that limiting Ashley's growth is likely to be in her interests, as well as the parents' interests, with low risks.

Joel Frader, agreeing with Brosco and Feudtner, says that the measures used to limit her growth "miss the point," which is the lack of social support which might allow the family to care for her at home even if she grew to normal adult size; e.g., by providing mechanical devices to assist in lifting her. I must day I think this misses the point, which is to try to maximize Ashley's interests, or more precisely, to maximize the ratio of benefit to burden.

I think the father makes a compelling argument that her interests will be better served by limiting her size, regardless of whether devices or supportive services are available. No matter how many people or machines are moved into the home, she will be easier to hold and move if she is smaller. She is more likely to be brought on trips and to have more pleasurable experiences. She is less likely to have complications, such as bedsores.

I also agree with the father's observation that having her size be more appropriate to her developmental level will make her less of a "freak" (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor, and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring.

It reminds of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines. The owners hadn't noticed the problem until it was brought it to their attention. If children like Ashley could magically retain the appearance of an infant, they would not only be easier to care for in the physical sense, but the emotional reaction to them would probably be more favorable. This, of course, may be more of a problem for strangers than the parents, who seem wonderfully attached to her, with little difficulty seeing her as a beautiful, radiant, contributing member of their family.

Norm


Benjamin Wilfond, 11:43 AM EST

There is no question that, as Joel suggests, an important priority should be to improve the services and support for children profound disabilities and their families. However, the issue of the impact of size on encouraging "mobility" would generally be true whether the care is provided by family members or by other care givers. So even having better services (i.e. more people) would fully address the issue.

Several other thoughts. First, we may want to distinguish between the objectives and the means. Joel's concern about the hysterectomy is primarily related to the surgical risks. However, an alternitative approach to attenuating growth is to adjust the caloric intake. In fact, since such children are provided nutrition through a feeding tube, the family and physicians must make a conscious decision about their goals for the size of the child. Limiting calories to reduce growth velocity will result in a shorter height. Alternatively, while large amounts of calories will only have some impact on height, it can increase weight significantly. Would we find this case less startling if parents were requesting recommendations for the amount of calories to limit her growth? Further, regardless of what providers recommend, the parents are the ones feeding the child, so they could do as they please in their home. What distinguishes the current case is the request for the involvement of health care providers to helping the family reach their goal.

Second, the while the parents are doing their best to anticipate how difficult it might be to manage their child as she got larger, their prediction is speculative. It is possible even if she were larger; they would still find a way to maintain her mobility and family engagement. While it is impossible to predict how she would be care for as she got larger. Some issues that seem insurmountable when looking forward become more manageable when the situation is at hand. But it doesn't always go that way. I do think that after sufficient discussion and exploration by the family, that a decision to limit growth because of this concern could be reasonable. I do think that we should respect parents' wishes to make such decisions, particularly after such prolonged engagement and discussion.

Third, like Dr Fader, I am most concerned about the surgical risks. But that may reflect me not being a surgeon. However, there are a range of surgical procedures that are often performed on children with profound disabilities to improve their care. These may include some relatively simple surgeries, i.e. gastrostomy placement (feeding tube), tonsillectomy (to reduce airway obstruction), tracheotomy (to facilitate airway suctioning), as well as more significant interventions; i.e. fundoplication (to reduce reflex), and spinal fusion (to prevent further scoliosis-which can affect positioning). Some families choose not do such surgeries because they believe that they can achieve the goals through simpler measures, which others families decide to use such approaches. I think that parents who might be considering the issue of hysterectomy would benefit from studies that describe caregivers and children's experiences with menstruation to provide more guidance about the its impact on quality of life. But it is not uncommon to balance surgical risks for children with disabilities in order to improve their quality of care.


Joel Frader, 12:36 PM EST

The paper by Gunther and Diekema notes two reasons for hysterectomy besides "complications of menses." First, elimination of the need to give progesterone along with the high dose estrogen to reduce clotting risks. Second, eliminating the risk of "future uterine and cervical cancer." While understandable, one wonders at what point one hesitates to remove additional organs in order to prevent future disease. It would help to know the incremental risk of cancer associated with the estrogen therapy.

Joel Frader, 12:40 PM EST

Just to make sure that Dr. Fost, with whom I agree, and everyone else understand my point: I support the decision made by the family with Drs. Gunther and Diekema. Nevertheless, we do need to address the separate issue of the society's inadequate support for caring for those with severe disabilities.

Norman Fost, 1:54PM EST

** This is in reply to Joel's comments about the hysterectomy.

It's helpful to note the father's primary reason for removing her uterus: she doesn't need it. Since it's only purpose is procreation, which will clearly not be in her interest, it presents her with risks and burdens and no benefits. The most likely of these is menstruation, which should not be trivialized. Ashley may be just competent enough to experience the difficulties that menstruation often bring to severely retarded women, include being terrified on a recurring basis. There is also the small risk of pregnancy, which has occurred in such individuals, particularly if she needs to be institutionalized later in life. The risks of thrombosis (from progesterone), and cancer (from estrogen) may be low, but cumulatively these risks should be weighed against the low risk and transient discomfort of surgery. Different people may reach a different weighing than the parents did, but I do not think their conclusion can be described as unreasonable. Notice also her ovaries were not removed, because of concerns about aggravating her already high risk for osteoporosis.

One other point about the hysterectomy. Some of the critics on the weblog have raised the familiar cry of eugenic sterilization. This criticism is singularly misplaced. The appropriate concerns about eugenic sterilization, in the US and elsewhere, were based on coercive governmental programs, for the purpose of preventing procreation by individuals who were believed (often falsely) to be at risk for producing retarded offspring who would be a burden to society. None of these issues are involved in Ashley's case. She is extremely unlikely to procreate, unless she is raped, and has no interest in procreation. The motive has nothing to do with societal burden. And the state is not involved. This was a private decision, made by her parents in consultation with expert, caring physicians, and clearly motivated to make her life easier.

There is another organ she probably doesn't need, with some risk for discomfort; namely, her appendix. This too, was removed, as is commonly done in patients undergoing laparotomy for another reason.

Norm


Joel Frader, 2:42 PM EST

In reply to Norm:

Generally, I agree. However, it would also have been reasonable to see if menstruation represented either psychological or hygienic difficulties for Ashley. If either or both developed, one could respond medically to minimize the frequency and amount of bleeding or decide on hysterectomy after puberty. I raised the issue not because of specific concern in Ashley's case but to alert readers about less-than-careful thinking that has occurred in other cases.

Joel


Norman Fost, 3:59 PM EST

I'd like to raise another point in response to some comments on the weblog suggesting that this is an example of parents and doctors going off the deep end and treating a handicapped child in a way that is not her interests. Part of this criticism reflects a belief that the parents have asked for these interventions for their own convenience, to minimize their burdens.

There was a time when parents and doctors commonly conspired to deprive handicapped children of standard medical care, often with the explicit goal of hastening death. The "Baby Doe" controversy in the 1970's and 1980's was largely about a well documented pattern, over many years, of withholding standard medical treatment from infants with excellent prospects for long happy lives. The paradigm cases involved children with Down Syndrome and easily fixable defects, such as duodenal atresia.

That problem has largely been resolved in the US. It is, for example, unheard of for an infant to have standard treatment withheld simply because the child has Down Syndrome, or spina bifida, another common birth defect which resulted in inappropriate discrimination on the basis of handicap. The way in which it was resolved produced an over-correction in many people's minds: i.e., excessive use of technology to rescue infants with little or no prospect for long or meaningful existence. Disagreements now are more commonly about very gray cases, babies with uncertain futures and insufficient facts to predict likely longterm outcomes.

One of the major changes from then to now has been the widespread use of hospital ethics committees, as occurred in this case. While these consultations obviously can not eliminate the possibility that of a decision that, on reflection, is difficult to defend, they greatly reduce the likelihood that decisions will be based on bad information, or sloppy thinking, as was common in the Baby Doe cases.

The detailed account of the medical basis for the decisions in Ashley's case, as well as the careful ethical reasoning that they relied on, are well documented in the article by Gunther and Diekema, and the father's extraordinary detailed account of how and why they came to their conclusions. Whatever disagreements critics may have, it is not possible to say this decision was made casually or quickly, without careful consideration of the relevant facts and arguments.

This is not to say they considered everything. Joel Frader's question, for example, of why not delay the hysterectomy until there is evidence she is suffering from menstruation, was not explicitly addressed in the available materials. So it is always possible to do it better. But the process they used is dramatically different from the approach that characterized decisions 20-30 years ago. Such a process increases the likelihood that a decision will withstand scrutiny, reduces the likelihood that the participants will later realize they left out some important consideration, and should reassure the public, including advocates for handicapped children, that the child's best interest is the focus of decisions.

Norm

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