Background on Stephen

Stephen Dawson was born prematurely and suffered from extensive brain damage due to meningitis. As many as 25% of newborns who suffer from meningitis die, and of those who survive 15-25% develop serious brain and nerve problems. Stephen survived, however was one of the 25% who suffered pretty heavily: he was left blind and with no control over his limbs or bodily functions.

Stephen had surgery when he was little, and afterwards required 10 hours of sustained caring for at home prior to being sent to a foster home at the age of 3. His parents remarked that his condition was “so poor and of such low quality, that the services and facilities could be better used by others” (Thomas, Waluchow & Gedge, 229). They believed that his life was painful and unhappy.

 Stephen’s Case

Now at age 7, Stephen’s professional caretakers have a different view of the situation. They see Stephen as “a happy little fellow despite his handicaps” (Thomas, Waluchow & Gedge, p. 231). They state that his abilities have been underestimated, and they have been much more involved in his life over the past 4 years than his parents have been and allude that they therefore perhaps understand his situation better. Now Stephen requires another surgery due to a blockage in the shunt that will lead to more brain damage and likely death. At first, Stepehen’s parents consent – however after some deliberation, they decide they would rather him die with dignity than continue on a life of suffering. The major questionable points to consider are threefold:

1)    Who gets to decide?

2)    On what grounds is it justified to not treat a patient?

3)    What are the legal rights of the mentally disabled?

Analysis

To answer the first question, we must address autonomy. With autonomy, one has the right to “self-rule that is free from both controlling interference by others and limitations that prevent meaningful choice” (Beauchamp & Childress, p. 101). In this situation, Stephen does not have the cognitive capacity to make a decision in which he adequately understands. Therefore, the legal right would logically go to his parents. However, the reason we typically resort to a parent is because they tend to be their child’s primary caregiver. In this circumstance, the workers at the foster home spend more time with Stephen than do his parents, and the Justice even argues that the professionals are “better qualified than the parents are to assess his condition” (Thomas, Waluchow & Gedge, p. 232).

In order to address the second question, it is imperative to consider non-maleficence. Physicians have a duty to care for patients and to do what they can to treat them. In this situation, it is in Stephen’s best interest to undergo the surgery in order to have the best chance of survival. In deciding who decides, physicians “should be making the decision whether to withhold or withdraw treatment,” as they have the knowledge in this situation (Gedge, Giacomini, Cook & DeJean, p. 864).

To answer the third question, to completely compromise and invalidate a human being based on a cognitive disability is acting as if their life is lesser than others. Similarly to how some feel strongly about keeping a fetus alive, a human being at age 7 is a living, breathing being and must be treated as so. Just because they are not fully cognitively able to make a decision does not mean that it is the best decision to passively let them die or even to “die with dignity.” Similarly to our previous situation involving the suicide case, would he have died “with dignity” if he had killed himself? Just as I believed it was important to save that individual’s life, it is important to save Stephen’s life. The staff at the foster home is technically the primary care management of Stephen, and in addition to the doctors who care for him, the team has indicated that treatment is in his best interests, and thus I believe that they have every right to go ahead with the surgery.

Resources

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009. Print.

Gedge, Elizabeth, Giacomini, Mita, Cook, Deborah, and DeJean, Deirdre, “Decision Tools for Life Support: A Review and Policy ANalsis,” Critical Care Medicine 34, no. 3 (March 2006): 864-70.

Meningitis in Children. Merck Manuals. February 19, 2015. http://www.merckmanuals.com/home/childrens_health_issues/bacterial_infections_in_infants_and_children/meningitis_in_children.html.

Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study   Approach to Health Care Ethics. 4th ed. N.p.: Broadview, 2014. Print.