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Doctors: Whose Side Are They On?By Mike Ervin My long, depressing winter was made all the more bleak when the Ashley X story sizzled in the mass media. Those who tried to put forth an ethical rationale for shooting a 9-year-old disabled girl full of hormones to stunt her growth and then surgically rendering her permanently childlike scolded us critics to hold our fire until we’d walked a mile in the shoes of parents like hers. They waxed eloquent about the painful burdens of care giving, about the crushing pressure aging parents feel to continue to care for their growing disabled kids at home. Reporters and the medical professionals they cited appeared to accept this dynamic of eternal dependence and solitary struggle as an immutable given. There was little analysis of the disregard of policymakers that leaves families like these with so few community support options that they consider going to such lengths. The press seized upon the Ashley story after a report by pediatricians Daniel F. Gunther and Douglas S. Diekema of the Children’s Hospital and Regional Medical Center at the University of Washington School of Medicine appeared in the October issue of Archives of Pediatrics & Adolescent Medicine. The doctors wrote of how they gave Ashley high doses of estrogen to keep her body from growing and removed her breast buds and uterus. They recommended that this option be open to all parents of children with “profound developmental disabilities.” Around this same time, The Royal College of Obstetricians and Gynaecologists in the United Kingdom issued an equally appalling but considerably less-publicized report. It urged medical regulators to allow the “active euthanasia” of newborn babies with certain disabilities, such as spina bifida. It, too, grasped for justification by citing the physical, financial and emotional toll such a child can take on a family. “A very disabled child can mean a disabled family,” it said. And then in March, a mother of a 13-year-old boy with cerebral palsy in Turkey released a press statement announcing that doctors at Ankara University Hospital will soon examine her son to consider her request to perform Ashley X surgery on him. In my reeling state of frustration, I wondered what the hell it is about doctors. How can so many of them attain so much education and remain so oblivious to the basic humanity of people with disabilities? Might there even be something about the detached manner in which they are educated that makes them more susceptible than most to disability bigotry? I asked Lisa Blumberg these questions because she has written a lot of good stuff about issues like euthanasia. She refers to herself as a corporate lawyer by day and freelance writer and disability rights activist by night. She said: “I don’t think doctors are instinctively more prejudiced than others about disability, but they are in a position to act on those prejudices since they have power over people’s bodies. In addition, their view about life with a disability may be distorted because they see disabled people in settings where the focus is on what is ‘wrong’ with them and whether they can be ’cured.’ It’s a vicious cycle — doctors are infected by the prejudices of society, then doctors’ prejudices become prejudicial practices which fuel the prejudices of society. “The Ashley X case proves once again that doctors and family members acting together can do anything to a person with a disability and especially a child — murder, maiming, confinement, you name it. Individual rights vanish.” Said Steve Drake, research analyst for Not Dead Yet: “There is no valid justification for subjecting a young child to an irreversible and invasive series of surgeries and drug interventions that provide absolutely no physical or medical benefit. There is a fairly large body of research that shows physicians and other health-care professionals underestimate our quality of life compared to our own ratings on that score. It’s even worse with children with developmental disabilities. Several studies have shown a tendency by neonatal workers to overestimate the severity of disability associated with a given diagnosis, and so they are much more likely than families or the general public to believe some disabled kids would be better off dead.” Dr Howard Brody, who practiced family medicine for 26 years in Michigan and now teaches at the University of Texas, admitted that he has been the victim of such distorted thinking. In the 1980s, he adamantly defended David Rivlin, a quadriplegic living in a Michigan nursing home who petitioned a judge for permission to have his life-sustaining ventilator turned off. Rivlin said he wanted to die because his life was miserable. Permission was granted, the vent was turned off and Rivlin died. But in a piece published in the Lansing City Pulse in 2004, Brody wrote: “At the time of the Rivlin ruling, a few advocates for persons with disabilities complained about the decision because Rivlin had never really talked with them to learn what other possibilities besides death and staying in a nursing home existed for a quadriplegic person on a ventilator. At the time I wondered who those busybodies thought they were… I am now embarrassed to realize how limited was the basis on which I made my decisions about David Rivlin…If Rivlin had been given access to a reasonable amount of community resources, of the sort that other persons with disabilities were making use of at the time, he could have been moved out of the nursing home and probably could have had his own apartment. He could have been much more able to see friends, get outside a bit, and generally have a much more interesting and stimulating life. “This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.” But Brody is still hesitant to characterize the Ashley case as a prime example of what Blumberg calls “medical prejudice.” He told me, “I know it sounds trite to bring out the old expression about walking a mile in their moccasins, but I think we bioethicists need to be more humble and not imagine that we can proclaim right and wrong based on our necessarily imperfect glimpse of what a particular family is going through. Does this mean that parents have not made terrible decisions, on behalf of their children, in part because they were swayed by social stereotypes and misinformation about disability? Of course not.” So what can be done to make more doctors see the light? Blumberg said: “Medical school classes and continuing ed courses need to teach the social model of disability. Of course, more people with disabilities need to go into medicine and the allied health fields, and more outreach needs to be done. Organizations that claim to represent disability groups should devote 10 percent of their budgets to eliminating medical prejudices.” Said Drake: “It will take activism and advocacy. The only way to reach large numbers of physicians is through their professional associations and large events and publications. It’s doubtful we’ll be invited in to ‘educate’ the medical profession unless we advocate strongly for that.” Drake said the protest staged by several disability rights groups outside the headquarters of the American Medical Association in Chicago, which received worldwide media attention, is a good example of how to shift the tide. The protestors demanded the AMA formally rebuke the Ashley treatment. In February, protest leaders met with AMA officials, who reportedly agreed to consider putting the question before its policy-making body, the House of Delegates, at its annual meeting in June. In a response letter of March 5 to Amber Smock of Feminist Response In Disability Activism, Dr. Michael D. Maves, executive vice president and CEO of the AMA, reiterated that the House of Delegates makes policy and did not say whether the Ashley case would be on its agenda. Maves also said he didn’t believe regular meetings with a disability advisory group were necessary except on an ad hoc basis as specific issues arose. Maves, however, wrote: “I have requested that the AMA legislative staff review the Medicaid Community-based Attendant Services and Supports Act (MiCASSA) of 2005 when this legislation is reintroduced as the Community Choices Act of 2007. As I indicated during our discussion, AMA policy is supportive of reforming the Medicaid program to provide more home- and community-based options for Medicaid beneficiaries and allowing an individual to choose their best option for care.” Even if the AMA endorses the legislation and declares an Ashley X policy that satisfies the activists, Brody isn’t sure how effective it will be among physicians. “The AMA currently represents only about one-fourth of U.S. physicians,” he said. “They can speak out on any ethical issue they wish, and the rest of us can decide for ourselves if it is insightful or not. I personally am not an AMA member and do not believe that the organization necessarily speaks for me.” But in the same edition of the journal in which Gunther and Diekema published their report, there also appeared this glimmer of hope that not all physicians have gone off the deep end: An editorial called the Ashley treatment “ill advised” and said the most disturbing aspect about it is “how this solution fails to situate the plight of these parents, struggling to care for their children, in the larger context of a society failure to provide adequate social support… Without this broader reframing of the core predicament, high-dose estrogen therapy to prevent out-of-home placement simply creates a new Sophie’s Choice for parents to confront, where neither letting the child grow unchecked nor imposing shortness is without peril. If we as a society want to fundamentally revise the nature of the harrowing predicament that these parents face, then, in the end, more funds for home-based services, not more medication, is what is called for…(T)he appropriateness of attenuating growth in children with profound developmental disabilities will be judged not only in the privacy of clinical offices or within the confines of institutional review boards but also in the social-political context of both the disability rights movement and the woefully impoverished options for high-quality long-term residential care of children or adults with profound developmental disabilities.” ******************************* Mike Ervin is a writer and member of ADAPT, a group that works for the civil rights of people with disabilities. |
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