Background
Upon reading this case I immediately thought of the institutions that were built in the early 1900’s that housed the physically and mentally disabled, of all ages, in which people would admit family members as they believed they were not fit for society. These institutions, such as Letchworth Village in upstate New York, were soon discovered to be severely mistreating the patients – including techniques of horrific experimentation (Abandoned NYC). However, as this became widely accepted as unethical and immoral in the 1950’s, experts began moving people out of institutions and into communities (History of Health Treatments). In Thomas, Waluchow & Gedge’s Well and Good, case number 6.4 presents Stephen, a seven-year-old boy with severe mental disabilities. Stephen was born prematurely and shortly after suffered extensive brain damage by meningitis that left him “profoundly mentally disabled with no control over his faculties, limbs or bodily functions” (Thomas, Waluchow & Gedge, 229). Stephen has passed through the hands of many different institutions for physically disabled children and even to a foster home.
Dilemma
The three main dilemmas I found after reading this case were:
1) In such a situation, who gets to decide what is done with Stephen?
2) What are the legal rights of the mentally disabled?
3) In general, what makes it “okay” to not treat a patient?
In regards to the first question, we must turn to the principle of autonomy which acknowledges a person’s right to make choices, to hold views, and to take actions based on personal values and beliefs (Ethics Principles). In this case, Stephen lacks the cognitive capacity to make his own decision and therefore the decision should be turned over to his parents. However, the argument presented in this case is whether or not his parents should be given that right considering the fact that they are not his primary care givers and do not spend the majority of time with Stephen as the care givers in the institutions do. Some may argue that his parents hold the responsibility as they are his “next of kin” so to speak. However, in the case Justice Lloyd McKenzie claims that “the professionals who have been treating and observing Stephen since late 1982 are better qualified than [the parents] are to assess his condition and capacities because they, the parents, have hardly seen him” (Thomas, Waluchow & Gedge, 232). I agree with Justice McKenzie in putting the decision into the hands of Stephen’s caregivers.
In terms of the second question, regarding the rights of the mentally disabled, I believe the Citizens Commission on Human Rights has provided a very detailed declaration of human rights that clearly defines the rights of the mentally disabled. Some may argue that keeping Stephen alive is a waste of resources and time. However, I believe that ending Stephen’s life simply because of a disability and the immense effort necessary to keep him alive is simply inhuman. We don’t end the lives of people who are handicap because it is harder for them to perform tasks x, y, and z. Stephen was born, he is living, he is human and I believe that his rights deem it necessary to keep him alive – the declaration by the Citizens Commission states that “any patient has the right to be treated with dignity as a human being.”
The third question addresses the principle of non-maleficence described as an “obligation not to inflict harm intentionally” (Ethics principles). In this case, although the surgery would require an “extraordinary surgical intervention,” and would “constitute cruel and unusual treatment of Stephen,” the physicians have a duty to do everything in their power to treat their patients (Thomas, Waluchow & Gedge, 230). While some may believe that the pain that Stephen would suffer is grounds for making it acceptable to end his life, I believe that we must look at the case in terms of the long term rather than the short term. For Stephen, undergoing this surgery increases his chances for survival and, therefore, I believe the surgery should be performed.
Reflection
The two main dilemmas involve the principles of autonomy and non-maleficence. In terms of autonomy, Stephen lacks the cognitive capacity to make a decision for himself and therefore his parents should be responsible for making a decision. However, since Stephen’s parents do not spend much time with him, it is believed that the professionals who have been treating and observing him are better qualified to assess his condition and capacities. On the other hand, the decision as to whether or not the surgery should be performed revolves around non-maleficence. Is Stephen better off with or without the surgery? If it were up to me, I would have Stephen’s professional caregivers assess his conditions and if they agree that the surgery, despite the short-term pain, would improve his condition in the long term then I would respect their decision.
Works Cited
Abandoned NYC . N.p., n.d. Web. 17 Feb. 2015. <http://abandonednyc.com/2012/08/05/legend-tripping-in-letchworth-village/>.<http://nwabr.org/sites/default/files/Pri nciples.pdf>
Ethics Principles. N.p., n.d. Web. 18 Feb. 2015. <https://www.nwabr.org/sites/default/files/Principles.pdf>.
History of Mental Health Treatment . N.p., n.d. Web. 17 Feb. 2015. <http://www.dualdiagnosis.org/mental-health-and-addiction/history/>.
Thomas, John and Wilfrid Waluchow. Well and Good: A Case Study Approach to Biomedical Ethics. 3rd ed. Broadview Press Ltd., n.d. Print.
The two contrasting assessments in this case make the the dilemma more difficult to resolve. Why would the foster mother have a report that differs so much from those by the professionals at Sunny Hill? I think that because the information is not completely clear and the inconsistency of the reports that I agree with Judge McKenzie’s decision. In order to make a decision on behalf of the patient, the parents would need to have a more complete understanding of his condition which they lack since they are not around him very much. By not performing the surgery, their actions to not may not be in line with principles of non-maleficience because they may be causing more harm to him. Moreover, I agree that because Stephen is not competent enough to make an autonomous decision that his surrogate-decision maker should be the one that has best understanding of his conditions though I am not sure how that will be assessed with such conflicting opinions on Stephen’s current condition.
The three dilemmas you identified were thought provoking. Your discussion of the legal rights of the mentally disabled was respectable, but I am not certain if Stephen falls into purely the category of mentally disabled. The case states that the meningitis left Stephen “profoundly mentally disabled with no control over his faculties, limbs or bodily function”(p. 229 W&G). I agree with your statements that we should not end lives of individuals who are handicap because it is more challenging for them to perform tasks, however Stephen’s predicament is much worse than a single handicap. I think the Citizens Commission’s comment that “any patient has the right to be treated with dignity as a human being” is one that should be considered greatly when making the decision of replacing Stephen’s shunt. The definition of dignity is the quality of being worthy of respect or holding a sense of pride in oneself (google search). The case states that Stephen had “bowel movements [that] were excruciatingly painful [and] snorted from chronic nasal discharge” (p. 230). The fact that the father, who cared for Stephen for many years before placing him into other care, utilized such a strong word to describe the suffering Stephen is enduring needs to be considered. The current state of Stephen does not seem to imply that he is being treated with dignity, but instead is suffering immensely. The definition of suffering is the state of undergoing pain, distress, or hardship (google search). Stephen objectively meets the requirement to be classified as suffering. Furthermore, undergoing the surgery will not improve his quality of life and thus Stephen will presumably continue life with this distress until another maintenance repair is needed.
I enjoyed reading your argument on how the preservation of Stephen’s life should be the focus. However, I feel that you are giving too much value on living rather than the value death could have on Stephen. His mental impairment has led him to a life that cannot be assessed as being remotely enjoyable. The fact that he has lived this long while suffering maybe punishment enough. Surgery gives Stephen the illusion of hope. Given Stephen’s current state, if the surgery does not work, I believe that it would impact him more negatively than if he were to not get surgery. Suffering appears to be a common theme in the post above me and I concur with their assessment. Sometimes there is value in letting go and embracing death. Death does not have to mean that it is inhumane. Everyone has to die eventually and when they do the very act of dying does not dictate it being inhumane. I believe that the short term relief of dying will outweigh the long term trials of suffering because of his condition.