In Case 6.4 Stephen Dawson: Should Severely Mentally Challenged Patients Be Treated in Well and Good, we are introduced to a seven-year old boy named Stephen with severe mental and physical handicaps in need of a simple but life-sustaining surgery. Stephen’s parents made the decision (since Stephen was a child, mentally handicapped, and non-verbal) that he should not receive the surgery and be “allowed to die with dignity rather than continue to endure a life of suffering” (Well and Good). The main questions that this case presented to me was regarding who gets to make life and death decisions for the mentally handicapped, how much should the quality of life of the mentally handicapped affect their treatment options, and should treatment ever be ceased if we don’t know the will of the patient?
For me, the answer to the first question is fairly clear: the person with the most knowledge of the disabled person’s quality of life and day-to-day activities should be allowed to make the health decisions. This does not necessarily deem the parents or family members the most adequate to make decisions for the patient. I will have to agree with the authors of Well and Good and the courts deciding on Stephen’s case that in this situation, the parents aren’t the most fit to make decisions regarding treatment. Stephen had not been living with his parents the past couple of years, and workers at Sunny Hill argued that he had been understimulated and had a higher potential for mental capacity than what had shown and what his parents claimed he had.
The next two questions from the case are related and ask when, if ever, is it morally acceptable to cease life sustaining treatment of a disabled person, if you can’t know his or her will regarding the decision? For me, this wasn’t a question of whether or not disabled people have the right to the same life sustaining treatment that mentally competent people have because that answer is obviously yes. However, the question arises of how far you should go to sustain the life of a mentally disabled person with a very low quality of life when you cannot know their will. This is a question of non-maleficence, and whether or not a low quality of life does more harm to a person than death. If the person were mentally competent, we would simply allow them to make the decision on their own about whether their quality of life is worse than death. However, with Stephen being a child and mentally disabled, we cannot know anything definite about how he feels or how his quality of life is. We can only make assumptions about what we see. If Stephen had a chance of getting better, I believe this case would be much easier to decide. However, it is apparent that performing this surgery, despite its low risks, would simply be extending a life of low quality where he would continue to worsen until he died.
Despite all of these facts, I believe the judge was right to allow the State to make the decision to provide Stephen with the treatment. While to us it may seem like Stephen has nothing to live for, he could be a perfectly happy little boy. The problem with deciding that Stephen shouldn’t have the surgery is that we would be deciding for somebody else, who can’t tell us otherwise, that his life is no longer worth living. According to the President of the National Federation of the Blind, “when doubt exists at any time about whether to treat, a presumption always should be in favor of treatment” (“Medical Treatment of Disabled Infants”). This statement was made originally regarding disabled infants, but I believe the same logic should be applied to any young disabled child. They are not only too young to understand what is going on, but also don’t have the mentally capacity to tell us how they feel about their situation. The California Institute of Justice also released a set of amendments regarding the “legal rights of persons with disabilities, which also has a section on disabled infants that I believe applies to Stephen’s case. It says that “the[se] amendments attempt to ensure that decisions about medical treatment for handicapped infants are not made on the basis of subjective opinions concerning the future ‘quality of life’ of a person with a disability” (“Legal Rights of Persons with Disabilities, 65). The California Institute of Justice is making the same point I am making, that we cannot make life or death decisions for a mentally disabled person simply on what we think their quality of life is. We cannot know it for sure, and what if we are wrong and kill a little boy who was disabled but otherwise happy? In the end, I believe it would do more harm to the patient to guess about what he perceives his quality of life to be and allow him to die, than to continue to treat and allow him to live the rest of his life.
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 5th ed. New York, N.Y.: Oxford UP, 2001. Print.
Lockyear, Bill. “Legal Rights of Persons with Disabilities.” State of California Department of Justice. 1 Apr. 2006. Web. 21 Feb. 2015.
“Medical Treatment Of Disabled Infants.” National Federation of the Blind. 1 Mar. 1985. Web. 21 Feb. 2015.
Thomas, John E., and Wilfrid J. Waluchow. Well and Good: A Case Study Approach to Health Care Ethics. 4th ed. Toronto: Broadview, 2014. Print.
A child with mental and physical disabilities is considered by the parents to be a liability they have to endure all their lives rather than a gift they need to care for and enjoy. If Stephen is a normal seven years old boy, then his parents will ask the doctor to do everything to save his life; however, his parents valued his life to be not worth to undergo a “simple and routine” lifesaving surgery. The justification for their decision is of course that the surgery is not in the interest of the child, or his beneficence, as it prolongs his life and prolongs his sufferings. To Stephen’s parents, Stephen will not have a good quality of life and thus it is better to let him die with dignity. To me, a decision that is based on physical and mental disabilities is a discriminatory decision that needs to be revoked; “a simple and routine” lifesaving surgery that falls within ordinary care, is compulsory for all patients regardless of their status. The parent’s refusal of such a surgery will cause the death of “Stephen”, their own son, whom they have legal duty to safeguard and protect. The quality of life of a physical and mental disable boy cannot be assessed except from the disable child’s perspective and thus this requires imagination which will provoke doubt and uncertainty of the outcome. The only factual reason for the refusal of a “simple and routine” lifesaving surgery by the parents is that they need to dispose this heavy burden of a mental and physical disable child.
The moral status of Stephen in the perspective of his parents differs from that of the government of British Columbia that allowed the State to supply Stephen with the treatment. The parents of Stephen could be referred to as personalists who believe that a human being can only be granted personhood under the capability of performing certain functions. Most personalists believe that without minimum mental capacity or intelligence, human being isn’t a person despite normality in all other bodily organs or functions. Therefore, the parents’ refusal for treatment of their mentally retarded son portrays their inability to assign personhood to him, rendering him at a lower moral status compared to their other fully functional and healthy child.
This case brings to mind the”slippery slope” argument. If it is okay to withhold a ” simple and routine” surgery from a patient simply to avoid prolonging a life those other than himself deems fulfilling, what is to stop this from being a pattern that ends in euthanasia of the mentally disabled? Of course, this is a rather dramatic conclusion. However, it does ensure that we keep the principle of beneficence and non-maleficence in mind. It is the role of the medical profession to help and to do no harm. Thus, by default, a simple surgery that could prolong life must be performed.
Also, in this case, the surrogate decision makers should definitely be a person or entity which has spent time and interacted with Stephen. Surely, such an entity would have noticed Stephen’s joy and love for life. In this case, it appears that to his parents, Stephen represents nothing more than a burden. Their thin facade of wishing to allow his life to end with, “dignity,” sadly sounds like an excuse to let him die sooner rather than later for their own benefit. Thus, they should not be the ones to make a decision as surrogates.
This case also raises the question of who is “fully” human. Some might argue that a human requires certain mental capacities and capabilities, as mentioned by the first commenter. However, in this case, we can assume that Stephen does have such capacities since the people at Sunny Hill claimed that with stimulation, Stephen has a potential for high mental capacity. Even without meeting this definition, Stephen still deserves and is entitled to medical treatment.
Overall, this case requires that Stephen be treated. Competent surrogate decision makers would always choose the surgery. Also, to not provide the surgery would be to enter a dimension of discrimination which we as a society should heartily wish to avoid.
Alyssa,
There was a very challenging dilemma in this case. In most circumstances, as a guardian, parents are granted the authority to provide surrogate consent for their children, especially those who are disabled. In an ideal society, parents have their child’s best interest at heart and regard their child as a blessing to be saved and cared for at all costs. Parents are also held accountable for knowing what their child can handle better than anyone else. Parents often elect for their children to undergo various medical procedures as they consider the procedure to be beneficial for the child. In this case, however, the parents of Stephen are exhausted by the hourly care that Stephen requires, as someone both mentally and physically handicapped, and argue that he should be “allowed to die”. The Dawson’s have entrusted Stephen under the care of Sunny Hill and are arguably less knowledgeable of Stephen’s current status and quality of life.
I agree with the main questions that you confront in your discussion. I also support the notion that Stephen’s parents are not currently in the best position to deny a simple, life-saving surgical procedure that will improve Stephen’s quality of life, regardless of the fact that his maximum quality of life is not optimal by any means. The professionals of Sunny Hill describe Stephen as a “happy little fellow despite his handicaps” and as demonstrating greater potential than evidenced by the Dawsons (231). This demonstrates that the Dawsons may not know or want to acknowledge the full potential of their son and instead see a handicapped child. I agree that it is nearly impossible to judge whether someone views death as being desirable over their current quality of life if they have no way of communicating their opinion. It is morally wrong to say that a mentally competent and “healthy” individual’s life is more valuable than the life of someone who is disabled. You encounter a “slippery slope” if you begin to weigh lives based on importance. I agree that Stephen should be given the procedure and the parents should be overruled.