What are ethical dilemmas
The so-called Ashley treatment is controversial. It is mainly criticized by German ethics experts.
The child's situation website set up by Ashley's parents is one of the most frequented homepages in the United States. Photo: http://ashleytreatment.spaces.live.com/blog
Can medicine do what it can? In the USA, the question is often answered in the affirmative, even with indications that can only be recognized as "medical" with difficulty - if at all. A surgical intervention as part of a combination therapy with the primary goal of facilitating home care for a severely disabled person is unusual even by American standards. There, at the beginning of the year, the "Ashley case" caused a sensation, and not only there: in Germany, too, the general media were at hand with often poorly differentiated reporting.
What happened? An unnamed family had asked a medical team in Seattle to curb the growth of their daughter Ashley, who was six at the time of the start of therapy, and at the same time prevent the girl from going puberty. Ashley is said to be kept in a "permanent childhood" state. The doctors responsible for Ashley's treatment, child endocrinologist Dr. Daniel F. Gunther and Dr. Douglas S. Diekema, a specialist in questions of medical ethics in childhood, had presented the so-called Ashley treatment in the journal Archives of Pediatrics and Adolescent Medicine (2006; 160: 1013-17). A report in a Californian daily newspaper at the beginning of the year drew the public's attention to the unusual fate - and to an even more unusual therapy.
Ashley suffers from static encephalopathy, cannot walk or sit, and - according to parents and doctors - has remained mentally the same as a three-month-old baby. According to their parents, the child is mentally alert and aware of their environment and loves music. Ashley is fed through a tube, her parents are used to carrying her - to the bathroom, to her buggy-like vehicle, to the car for family outings. But Ashley grew, got heavier and taller, which made parents worry that the day was approaching when home care would no longer be possible. The parents turned to a clinic in Seattle. A committee composed of 40 doctors and bioethicists examined the various ethical and legal aspects. Particular attention was paid to sterilization, which is part of the "Ashley treatment". Attorneys consulted took the position that an American law prohibiting forced sterilization of women does not apply to Ashley. The law only applies to minor disabilities. Ashley, however, is severely disabled. In addition, according to the lawyers, sterilization is a side effect of the treatment and not its primary goal.
On this basis, Ashley was given combination therapy in the summer of 2004, which consisted of three segments. The uterus was surgically removed to prevent menstruation and sexual development. The latter goal was also the removal of breast tissue; Ashley's parents had noticed prepubertal breast swelling in the child. The second reason given for this procedure was family history, which included numerous cases of breast cancer. They wanted to prevent the risk of Ashley getting it too.
Eventually, high-dose estrogen therapy was administered to limit Ashley's growth. Parents argued that it would be easier to care for Ashley if she stayed small. Children with such a high degree of dependency and restricted growth are called "pillow angels" in the USA. The therapy allowed her height to be limited to around 135 centimeters, the nine-year-old weighs around 30 kilograms. The parents, who affirm their love for Ashley, also argue that the bedridden child can be prevented from complications by taking measures that are common in immobile patients, such as ulcers from lying down, bladder infections, and pneumonia. In addition, Ashley's claims are those of a toddler, and therefore the body of a nine-year-old is more appropriate and dignified for her in the long term than that of an adult woman.
Violation of the no-harm principle
The child's situation website (www.ashleytreatment.com) set up by Ashley's parents is one of the most popular websites in the United States; in the first ten days of January more than 1.6 million visitors were counted. Parents state that, to the best of their knowledge, the "Ashley Treatment" is the first of its kind. They emphasize: “A fundamental misunderstanding is to assume that therapy is for the convenience of the caregiver; the main purpose is to improve Ashley's quality of life. Contrary to what many people believe, choosing the Ashley treatment wasn't a difficult one. Ashley will be much better physically with no menstrual pain, free from the discomfort of large and fully developed breasts, and with a smaller, lighter body that is more comfortable to lie on and be carried. "
University of Pennsylvania bioethicist Art Caplan called the case "a slippery slope" and doubted that stunted growth would be a solution for similar patients. The pediatricians Dr. Jeffrey Brosco and Dr. Chris Feudtner of the University of Miami expressed doubts in a journal about the effectiveness of estrogen inhibiting growth, but praised his colleagues in Seattle for having raised this critical question for discussion. German ethics experts see the dilemma that medicine can pose to a patient like Ashley. On a purely human level, he understands parents who come up with such an idea, explains Dr. med. Heiner Fangerau from the Institute for the History and Ethics of Medicine at the University of Düsseldorf. The case is problematic for several reasons. The case touches on the one hand the autonomy of the child, on the other hand the non-harm principle of medical work. The child could be harmed by the therapy, especially by the high dose estrogen administration.
These two aspects have to be weighed against the medical mandate to ensure the well-being of his patients. Indeed, the therapy could have positive effects for the child if, as a consequence, they are better cared for and can stay in their family environment. The child's autonomy is relativized by his mental retardation. From this point of view, the intervention could possibly be justified. Fangerau sees a bigger problem in what he calls the misappropriation of medicine: “One uses medical procedures that actually have a purely therapeutic purpose. Here, however, a human being is being manipulated in order to facilitate its care. That means: the goal of the action does not necessarily coincide with the goal for which the procedure was originally intended. Here an inclined plane is entered, on which we cannot yet foresee where it will lead us. "
Ethical tradition of utilitarianism
The dichotomy of feelings is also dominant for Fangerau: “If I were asked as a doctor - I would not perform this procedure on a child. The wish of the parents, on the other hand, is absolutely understandable. ”Fangerau sees the work of the 40-person commission in Seattle as an expression of the“ American ethical tradition of utilitarianism ”, which was weighed up and seen as an advantage for therapy. In Germany, utilitarianism is not so widespread; here, rather, virtue and norm ethics are used.
For Priv.-Doz. Dr. med. Eva Brinkschulte, Head of the Department for History, Ethics and Theory of Medicine at Otto von Guericke University Magdeburg, the procedure of the doctors in Seattle corresponds to the criteria of an experiment: "A therapy has been taken that is not yet known, how it will expire; a therapy for which there is no indication in the medical sense. ”According to the medical historian, a similar case would not be dealt with in such a way in Germany:“ It is a decisive violation of the dignity of man, his right to Integrity also extends to the genital organs. Removing a young woman's uterus, even if it would probably never perform its biological function, is actually unthinkable. Isn't it rather the responsibility of society to make care conditions easier for the family instead of finding a private medical solution? The problem is comparable to that with pre-implantation diagnostics: We can locate and eliminate certain diseases, but - this is mentioned again and again in the discussion - we very quickly find ourselves in the situation of making a selection. "
The incompatibility of the Ashley therapy with the ethical norms in medicine applicable in Germany does not have to have an effect that is valid across borders. For us, as Brinkschulte also sees it, the aspect of sterilization plays a major role because of the specifically German past in the 20th century. Elsewhere, pragmatics may outweigh such concerns. Scientific American magazine wrote in an editorial that Ashley's parents knew best what was good for their daughter. And a commentator from Nature sees the “Ashley treatment” as having fundamental potential for the future.
Dr. med. Ronald D. Barley
Ashley Case: An Ethical Dilemma
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