Medical Ethics: Where do we draw the line?

            Ashley X, nine years old, was sterilized and frozen in time at age six. 

Ashley is diagnosed with a severe brain impairment known as static encephalopathy (1).  She cannot walk, talk, keep her head up or swallow food.  Her parents chose to take medical action in order to keep her small so she would be easier to relocate in the home and to prevent having to enroll her in a care giving-based home (1).  Ashley’s parents maintain that all of the procedures were in Ashley’s best interest, in the preservation of her dignity as an individual and with the goal of improving her quality of life (4).  

            Ashley’s brain condition is a developmental disorder diagnosed as “static encephalopathy with marked global developmental deficits” (4).  Literally meaning “brain damage,” the term encephalopathy can be a consequence of a variety of causes such as head trauma, brain tumor, lack of oxygen or nutrition and premature birth (4).  In general, it is characterized by an “altered mental state” (4) and specific symptoms including the loss of cognitive abilities, lapse in memory, problems with speech and hearing and loss of muscle control (4). 

            Ashley’s brain stopped developing at around three months, rendering her with cognitive and mental abilities of an infant.  She is unable to control her muscles, and lacks the capacity to express complex emotions or participate in complicated thought processes (4).  However, Ashley does exhibit an awareness of her own environment, expressing recognition of music, lights and sounds and appears to be soothed by personal contact (4).

            The “Ashley Treatment” included a high-dose estrogen therapy to limit height and weight, hysterectomy to remove the uterus and prevent menstruation, breast bud removal to halt breast development and an appendectomy (3).

            Ashley ingests estrogen eleven times greater than the standard prescribed oral contraceptive dosage.  Estrogen has been proven to help regulate the fusion of the epiphyseal disks, or growth plates, in the long bones of the body (4).  Estrogen deactivates both osteoblasts and osteoclasts, disallowing for any bone remodeling (4) and consequently stalling growth.

            The hysterectomy was done in order to stem her menstruation cycles and prevent cramping; however, the ovaries remained so that they might continue to produce hormones, specifically estrogen (4).  The appendectomy was completed for “preventative purposes” (4), while her breast buds were removed to prevent breast cancer and fibryotic cysts, which ran in her family.

            There are several risk factors involved with all of the above procedures.  Observations have lead doctors to note that a high dosage of estrogen could lead to deep vein thrombosis (4)—a very significant risk for Ashley.  Deep vein thrombosis is caused by the formation of blood clots in the deep veins which could disengage and travel to the heart or lung (4).  Ashley’s risk is greater because she is receiving eleven times the normal dosage and her sedentary condition does not allow for great means of blood circulation (4).

            During the hysterectomy, her ovaries were left intact in order to let them produce necessary hormones.  However, it has been cited that the ovaries may not function properly as a result of altered blood supply created by the procedure, which could result in a decrease in the natural hormone production necessary to prevent osteoporosis and heart disease (4). 

            Ashley X’s treatment has spawned massive amounts of ethical discussion which lead to interesting observations of the procedure in question.

            The ‘respect for persons’ principle dictates that persons with diminished autonomy are entitled to protection (4).  A failure to provide any person with adequate health care regardless of disability violates this basic right for persons—which have lead many people to agree with the stance of Ashley’s parents.  Ethicist Joel Frader argues that “our society generally provides insufficient support for persons with disabilities and those who… care for the patient.  A more generous society would make sure caregivers have assistance devices and other help necessary… so that the work of providing care does not become overwhelming,” (4). 

            Opponents, though, look upon the procedure as terminal infantilizing (4), denying her the dignity and respect that she deserves as a person.  Remember: Ashley can respond to her environment with smiles or cries, observations providing that she has a sense of consciousness and, perhaps, a sense of dignity. 

           Consequently, how do we draw the line between total lack of cognition/consciousness and mild cognition/consciousness?  It would seem that Ashley’s recognition, according to psychological principles dictating that perception results from processing stimuli, would register that her brain is conscious and fairly understanding of her surroundings.  George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered, “If the concern has to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience a sense of dignity,” (1). 

           This barrier between total lack of cognition and some cognition becomes particularly relevant to the spectrum of neurobiology and behavior.  Today, neurobiologists are still making observations concerning cognition and consciousness, which could pave the way to forming new opinions on this argument: “There is some disagreement about what precisely human dignity consists in, and this is reflected in disagreements about which individuals have human dignity: all human individuals with a developed nervous system who are not brain dead?”(2). 

           If the last question was to be true (whereas observations are made in its favor), it should be observed that Ashley X is not, in fact, brain dead because of her obvious awareness of environment.  In basic psychology, perception of the environment takes considerable cognitive awareness.  This would disprove Dvorsky, and open a new facet to this specific case of ethics involving levels of cognition.

            The perplexing quality of Ashley’s case has left much to be pondered.  In today’s society, there are means of allowing people with disabilities incorporation into society by use of special devices, and as a result medical or pharmaceutical procedures seem only experimental and without founding.  Arguments could be made in order to remove even more organs for “prevention” of future diseases, to the extent that somewhere, a line must be drawn.  In the case of the appendicitis, where only 7% of the population is generally affected (4), would it not also be in her best interest to remove her tonsils for fear of bronchitis and strep throat, her gall bladder for fear of gall stones? 

            Observations have lead to several questions.  While medical advances are certainly a necessity for society, is it important that these experiments do not impede upon the basic dignity and respect of individuals?  Is this procedure setting a dangerous precedence for society as a whole, especially for the disabled?  What might stop parents from requesting sterilization of their cognitively impaired child because it is in her best interests?  If the goal is to improve her life and prevent things like bedsores, why not, drastically speaking, remove her arms and legs?  Does she lack the cognition to understand dignity of self? 

            In an attempt for closure, it is further necessary to muse upon such observations: in a world where plastic surgeons are readily enlisted to augment several body parts, it hardly seems offensive that this medical procedure, made to enhance one’s existence, should seem overly controversial.  In another light, this medical procedure could set precedence that allows for the manipulation of people with disabilities in order for a convenience of a caregiver or modern society.  Finally, the levels of cognition of understanding dignity of self must be drawn or further investigated for there lays a broad, undiscovered gray area.

            The “Ashley Treatment” has opened the eyes of millions and set in motion a propagating wave of new medical ethical reasoning, with regards to both the rights of the individual with a disability, the debate of cognition and consciousness in regards to dignity and the overall quality of life desired for this individual in such a situation.

References

 BIBLIOGRAPHY  \l 1033 1. Ayers, C. (2007, January 4). Parents defend decision to keep girl a child. Retrieved February 8, 2009, from The Times: http://www.timesonline.co.uk/tol/news/article1289216.ece

2. Bostrom, N. (2007). Dignity and Enhancement. Oxford Future of Humanity Institute. Oxford University.

3. Brosco, J. P., & Feudtner, C. (2006, October). Growth attenuation: a diminutive solution to a daunting problem. Retrieved February 9, 2009, from Archives of Pediatrics and Adolescent Medicine: http://archpedi.ama-assn.org/cgi/content/full/160/10/1077

4. Clark, P. A., & Vasta, L. (2007). The Ashley Treatment: An Ethical Analysis. The Internet Journal of Law, Healthcare and Ethics .

5. Cohen, E. (2007, January 12). Disability community decries 'Ashley Treatment'. Retrieved February 10, 2009, from CNN News: http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/

6. Gunther, D. F., & Diekema, D. S. (2006, October). Attenuating growth in children with profound developmental disability: a new approach to an old dilemma. Retrieved February 9, 2009, from Archives of Pediatrics and Adolescent Medicine: http://archpedi.ama-assn.org/cgi/content/full/160/10/1013