I believe that Justice McKenzie made the correct decision when he “ordered that temporary custody [of Stephen Dawson] be assigned to the Superintendent of Family and Child Services and that the operation to replace the shunt be performed” (Gedge, Thomas, and Waluchow). Stephen’s case raises several contested topics regarding autonomy and the rights of disabled individuals.
In general, when a patient is found incompetent, their family is responsible for serving as the decision-maker for the patient because they are most likely to know what would be in the best interest of the patient. However, that is not necessarily the case when the family has not been in contact with the patient in question for an extended period of time. In those situations, should someone who is closer to the patient assume the decision-making rights of the family in order to make sure the patient’s best interests are respected? Physicians have the authority to “choose a surrogate for a patient with limited competence or to make decisions for a totally incompetent patient. The surrogate may be a relative, close friend, physician who knows the patient well, or someone provided by the hospital or government” (“Medical Decision Making for the Incompetent Patient”). I believe that Stephen’s physician or primary caregivers are appropriate surrogates and should be able to override the family’s decision to decline the surgery. Stephen has lived away from his family for an extended period of time and, as a result, they no longer know what is in his best interest. On the other hand, Stephen’s physician or primary caregivers have been working with Stephen for years and know more about his current state.
Another question presented in this case addresses when it is justified to withhold treatment for an incompetent patient. In this case, the specific question is whether surgery will improve Stephen’s quality of life or make it more burdensome for himself and those who care for him. To answer this question, I would speak to Stephen’s primary caregivers to gather information pertaining to his general happiness and progress over the years. After hearing that “the professionals at Sunny Hill who have worked with Stephen over the years found him to be ‘a happy little fellow despite his handicaps,’” I would declare that the surgery is in no way extraordinary, and instead necessary (Gedge, Thomas, and Waluchow). While the surgery will not fix Stephen’s handicaps, it will help him to continue to live a happy life. I think that it is Stephen’s right to life. In no way does death seem like the better alternative to surgery in this case.
I think the hardest aspect of cases dealing with incompetent, mentally disabled individuals is determining when they are suffering and in pain. For example, in case 6.3, Mr. Latimer deliberately killed his daughter in an effort to “relieve his daughter’s continued and inevitable suffering” (Gedge, Thomas, and Waluchow). How did Mr. Latimer know that his daughter was suffering? In general, those who are incompetent and mentally disabled are unable to formulate sentences or demonstrate their feelings. As a result, I think it is absurd for Mr. Latimer or Stephen’s parents to claim that their children should die to relieve their suffering. While I do not have a solution to ascertain whether incompetent and mentally disabled patients are suffering, I think it is a violation of their autonomy for others to decide on their behalf if they should die to end their suffering.
Works Cited:
“Medical Decision Making for the Incompetent Patient.” Health Progress (Saint Louis, Mo.).U.S. National Library of Medicine, n.d. Web. 10 Feb. 2017.
Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study Approach to Health Care Ethics. Peterborough, Ontario: Broadview, 2014. Print.
Thank you for sharing your thoughts. Some questions we should keep in the back of our minds are: how are people without disabilities biased? How do we quantify the “value” of people—it is by utilitarianism? What does “quality of life” entail? How does one judge the “happiness” of another? Against what scale do we rate/judge happiness and/or suffering? I reference the following statements for us to consider.
“they [people living without disabilities] would never want to live as invalids, so therefore, no one should. They can’t see any value to such a life. ”
“despite their disadvantaged status and frequent exclusion from activities enjoyed by most Americans, a large majority of disabled Americans are satisfied with their lives…Even individuals who identified themselves as having very severe disabilities tended to report that they were very or somewhat satisfied with their lives.”
“The realities of quality of the lives of Americans with disabilities is obscured by the misguided projections and low expectations of others, for as one disability authority has observed, “when society opts to judge the quality of life for an individual with a disability, it does so from the perspective of a fear of disability and historical prejudice and discrimination.”
“people newly confronted with a disability “may have internalized society’s prejudices against persons with disabilities or developed fears about living with a disability. ”
Burgdorf, Robert L. “Assisted Suicide: A Disability Perspective.” National Council on Disability. National Council on Disability, 24 Mar. 1997. Web. 15 Feb. 2017. .
Szalavitz, Maia, Adi Jaffe Ph.D., Toni Bernhard J.D., and Katherine Schreiber. “Killing the Disabled.” Psychology Today. Psychology Today, 19 June 2012. Web. 15 Feb. 2017. .
Thanks for the post!
One of the concepts this case brought up in my mind was the matter of “do no harm”. It is understood that the patient, Stephen Dawson, is severely disabled and may not have a chance of recovery, but I do not think that euthanizing him is the best course of action. In class we have referred to our responsibility as moral beings to protect those whose autonomy may be infringed upon, and I believe Stephen Dawson certainly fits the description. Not only is he disabled, but he is a child with years of life ahead of him. Euthanizing him surely would cause him physical pain, not to mention this may not be the course of action he would wish upon himself.
Citation:
Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study Approach to Health Care Ethics. Peterborough, Ontario: Broadview, 2014. Print.
Hi Morgan,
I agree entirely with your opinion as you may have gathered if you have read my blog entry regarding the case of Stephen Dawson. In addition to the bioethical concerns of dealing with decisions to care for disabled patients, there is also a social aspect that Pamela touched upon in her comment. In an article from The Huffington Post, “I Am the Person You Hurt When You Say the R-Word,” it is explained how the overly used negative term “retarded” hurts those who have mental disabilities deeply and has continued to perpetuate the general negative stigma people have about the mentally disabled. I think it is important to remember in sensitive cases such as Stephen Dawson’s that the patients are not objects but real people. This is why it is imperative that whoever is making the decisions needs to determine what is best for the patient to provide them the best quality of life for each particular situation. In many cases, because disabled people are looked upon negatively or as “less than whole,” (Stephens) they do not receive the best care when it comes to decision making. Thus, it is extremely important for the decision makers to remember the purpose of their role and to ensure that these mentally disabled patients receive the same treatment as those who are not mentally disabled.
Work Cited:
Stephens, John F., “I Am the Person You Hurt When You Say the R-Word,” The Huffington Post. May 5, 2014.
http://www.huffingtonpost.com/john-franklin-stephens/i-am-the-person-you-hurt-when-you-say-the-r-word_b_4904579.html
Hi everyone,
I too believe that the caregivers at Sunny Hill, should have the ability to act as surrogate decision makers for Dawson and override the parents’ veto of the surgery. That being said, in your discussion you wrote that surrogate decision making was a violation of the patient’s autonomy. While I agree that the consent of the patient is optimal, in cases where the patient is deemed incompetent, a surrogate decision maker is often necessary. A person is deemed competent to make a medical decision if they “have the capacity to understand the material information, to make judgement about this information in light of their values, to intend a certain outcome, and to communicate freely their wishes to caregivers or investigators” (116). Dawson, being mentally disabled, nonverbal, and lacking awareness of his surroundings was clearly not deemed competent. Given the fact that Dawson was not deemed competent to make the decision regarding the surgery, we turn to surrogate decision makers. Like everyone else, I too believe that the caregivers at Sunny Hill, who have acted as Dawson’s guardians for the majority of his life, should make the final call regarding Dawson’s surgery, however I believe that it is morally unjust to judge the Dawson family and the decision they made for their child. While their decisions may not be in line with our personal values, we are spectators in the case who have no knowledge of the Dawson family dynamic or their ability to provide Steven with the resources he needs.
Noa
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009, 2013. Print.