Ashley X - Avoiding Oversimplification

In discussions surrounding bodily-autonomy issues associated with disability, there can be a tendency on all sides to attempt to reduce everything to gut reactions and sound bites when, in fact, a more complex analysis is needed.

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Posted by SusanJ  on  01/09  at  04:47 PM

You seem to be questioning the possibility of an accurate diagnosis of static encephalopathy or, possibly, questioning that there even is such a diagnosis. Why?

Posted by everlearn  on  01/09  at  07:01 PM

Anne, thank you.

Re the comment about the accuracy of diagnosis and more:

I am the mother of a 21-year-old son with severe cerebral palsy : or static encephalopathy : Ashley's diagnosis. A diagnosis of static encephalopathy merely explains that the child sustained brain injury -- perhaps a stroke or brain bleed in utero or oxygen deprivation during the birth process. The common name for this big scientific term, the use of which feels manipulative on the face of it, is cerebral palsy, when brain injury occurs near birth. Children who have survived near-drowning might also have the term static encephalopathy applied to them. Or children with "shaken baby syndrome."

The "static" part means that the injury the brain sustained as a result of the incident, whatever it was, will not get worse. Whatever areas of the brain were hurt -- and this is different for each and every individual with this diagnosis which makes all predictions very fuzzy -- will not get more hurt. It does NOT mean the person is stuck in time, forever an infant. Lots of challenges, yes, but not stuck. This characterization is a manipulation in my opinion.

There are myriad proven educational, occupational and physical therapies, and medical interventions that can assist children with this diagnosis to progress and have the opportunity to maximize their full potential. And there are myriad technologies, more each day, to enhance a child's ability to learn and communicate and affect their world. From what I see, medical technology and human/medical know-how was instead used to cement a foregone conclusion -- to literally intervene to stop this child in her tracks -- the very thing the physicians say they lamented about her condition.

Brain injury is tricky and recovery can be painfully slow, as any survivor of stroke will tell you. It feels especially slow to those worried about the survivor of the injury, who can lose patience even before the survivor. But the brain is very plastic, most especially in infants and children, and has an uncanny ability to find alternate neural pathways to compensate for the losses the injury may have caused. But nobody had the patience to simply let Ashley show the world who she would be, on her timetable, and on her terms. They didn't allow her even that inkling of respect. And that is the extreme tragedy of this.

Dr. Diekema, the co-author of Ashley's case study with Dr. Gunther, is listed as Chair of Seattle Children's Hospital Institutional Review Board (IRB), whose charge is "Human Subjects Protection." He was integral to make or break this travesty from going forward at Seattle Children's. It's his job to protect this little girl from exploitation, experimentation and harm. I believe he failed her.

High-dose estrogen therapy (to experimentally shorten this young child's stature) is a catalyst for both breast development and menstruation. The family feared both of these occurrences, according to the published medical study by Drs. Diekema and Gunther, and the parent's blog. Hence the hospital's novel treatment to try to alleviate one fear, a growing child, necessitated the further radically invasive treatment of removal of both the breasts and uterus of a 6-year-old (!) to alleviate estrogen's by-product and the family's second fear, normal development. Ironically, estrogen also increases weight gain, according to the studies the doctors cite, so they may trade weight for stature, which really won't solve the "problem" they say they intended to solve for Ashley's family. Deep vein thrombosis too is a significant risk with estrogen, a condition that also occurs when individuals cannot freely move, as is the case with this child. Bottom line, the estrogen "treatment" and hysterectomy and mastectomy "pre-treatment" increased risks this child already had, subjected her to permanent disfigurement, and removed from her every last thing that one might consider normal about this child -- growing and developing.

Ashley's intellectual capacity appears to have been the deciding factor in moving forward, which is intellectual chauvinism at it's worst. These doctors should pray they don't meet up with someone smarter than they. "First, do no harm" is a wonderfully simple standard. All the myriad, speculative justifications these doctors have put forward to create the illusion that Ashley will benefit, don't hold a candle to do no harm. Since when does possibly uncomfortably large breasts in her future, speculatively imagined since women in the family have a history of them, trump mastectomy to a six-year-old in harm?

If one's family has a history of obesity in adulthood -- should one be offered stapling a child's stomach or removal of part of the intestine as a "pre-treatment" preventative measure? If heart disease runs in the family -- should one be offered "pre-treatment" stents? If a family has a son in this predicament, should surgical testicle removal be offered since use of a wheelchair seat pommel for positioning might prove uncomfortable? Ashley still has her ovaries. Could not these too prove cancerous in the future, God forbid, just as easily as her uterus? The logic of the justifications are so suspect that it's mind boggling that learned individuals are even putting them forth.

These physicians violated the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research's number one rule stated in the landmark Belmont Report's Basic Ethical Principles: "Respect for Persons incorporates at least two ethical convictions: that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection," in Ashley's case, exceptional protection.

Posted by AnneC  on  01/10  at  04:03 AM

SusanJ:

Thank you for commenting. I am questioning not the diagnosis but the implications of the diagnosis and the extent to which it can truly be deemed appropriate with regard to predicting Ashley's future. Static encephalopathy is just another way of referring to cerebral palsy, or some sort of idiopathic brain injury. People with CP and brain injuries vary widely in their abilities and probably in their interior lives as well, and when someone has severe motor deficits, I simply find it scientifically untenable to make assumptions about their "mental age". I also find the concept of "mental age" to be suspect in the first place, as well as the assumption that a person's brain will never develop beyond a particular state, particularly when the cause of the brain injury is unknown.

As the other commenter mentioned, neural plasticity in humans (particularly children) is well-documented. And people have managed to awaken from years-long comas and minimally conscious states even when they were assumed unaware and non-communicative prior to a sudden surprise perk-up. As rare as these sort of occurrences might be, they represent, at the very least, a proof of concept with regard to (a) what we still don't know about the brain, and (b) that prognoses are not always accurate. Some might suggest that it is unfair to families and patients to cling to the idea of this sort of outcome, but I'm sure there has to be a logical middle ground as opposed to a simplistic dichotomy between wishful thinking and writing someone off.

I realize that parents need to deal with the here and now and the child they actually have and the realities of that child's situation, but I also see no reason to assume that there's an overwhelming historical precedent to suggest that simply having Ashley's diagnosis means that you will "never develop". It might very well be that her skills will always be comparable to those of a very young child, however, this still tells us nothing about what she might be thinking or feeling. All anyone can do is guess. And in cases when guessing wrong could result in abuses of power or personhood denial, considerable care is needed to make certain that decisions made are not enacted simply because the person-in-question's physical helplessness makes it possible and easy.

everlearn:

Thank you for commenting as well; you make some very well-thought-out points. I agree that the use of the term "static encephalopathy" (as opposed to something more familiar like "cerebral palsy") is perhaps somewhat manipulative. It's a term very few people are likely to have heard in the course of their daily lives, and therefore comes across as sounding far more exotic (and potentially "permanent") than it actually is. While I do think that more people would do well to learn medical terminology, I am disturbed by the extent to which some people (mainly in comments I've seen in various places around the Web) are acting as if they know all about static encephalopathy and that anyone who dares question the doctors' and parents' opinion of Ashley's prognosis is simply being presumptuous. Why shouldn't people be allowed to question parents and doctors, particularly when they make such sweeping claims about the finality of Ashley's developmental state? I don't evaluate claims on the basis of how convinced the people making them seem, or what their credentials are -- I evaluate claims on the basis of data and logic.

This, and other big-picture issues pertaining to this case, are the kinds of things that need to be brought out into the open for discussion. I've seen far too much focus on Ashley's post-modification configuration on both the part of those who agree with the parents' decision and those who disagree, when that isn't really the issue that needs the most emphasis. As I said in the article to which you responded, people without breasts or a uterus are certainly no less valid as people. However, the question of when and to what extent a person's bodily autonomy should be compromised on the basis that they might benefit from the procedures applied, is certainly not one with clear-cut answers.

I do believe it is proper, for instance, for parents to give their children vaccinations, chemotherapy, and other preventative/lifesaving interventions, regardless of the fact that the child might protest these things. Sometimes it is okay to do something to someone without their permission -- and yes, that sometimes extends to operating on them. Nevertheless, the nature of (and some of the stated justifications for) Ashley's operations result in a situation that falls outside the kinds of ethical explanatory power that most people today possess, so we are all struggling to determine boundaries -- both in this case and in potential future cases.

Again, thank you for your insightful comments -- I wish you and your son the best.

A Clarifying Note (to all):

I will state for the record that the points I made in my essay were not based on a bioconservative stance -- hopefully that was obvious. I actually believe that far too many people are fearful of technology by default, as opposed to seeing it as a potential force to drive positive change and improve the lives of all persons when properly applied. That said, whenever medical ethics are brought into the spotlight for whatever reason, I think it's important to give time to a range of diverse views -- we're all seeing different parts of the elephant, so to speak, and can learn from one another.

I chose to emphasize the disability-relevant issues of the Ashley case because when it comes to emerging technologies, people with disabilities are frequently the earliest adopters and therefore have a vested interest in hashing out the complicated ethical issues as early as possible during the broadening of a given technology's applications. Many disabled people have benefitted tremendously from new technologies -- ventilators, feeding tubes, augmented communication, mobility aids, experimental biomedical techniques (such as stem cells transplanted into a major artery in order to repair a damaged heart), and I stand by the right of people with disabilities to take full advantage of lifesaving and ability-enhancing procedures and devices.

I am optimistic that emerging technologies and more inclusive ethical paradigms can, if properly supported, bring about an era of vastly improved quality of life for people everywhere. However, when applying a new use of technology to a person incapable of expressing consent, the ethical rigor with which the procedure must be evaluated cannot be underestimated.

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