By: Hannah Heitz
Editor's note: This is the first of a short series of posts by students in the CSHH course: Human Health, Bioethics, and Disability Studies. Students in this course analyzed current events that were related to the fields of bioethics and disability studies. Some of those assignments were modified to be presented here over the next few weeks as Destination HealthEU posts.
Julianna’s parents had no idea that they would be faced with a life or death decision when they began noticing strange symptoms in their otherwise healthy five-year-old daughter. At a young age, Julianna was diagnosed with an inherited a condition called Charcot-Marie-Tooth Disease (CMT), which leads to nerve deterioration. The disease typically presents symptoms in early adulthood but Julianna’s rare version expressed severe symptoms at a young age. There is no known cure and her unusual, hastened progress has shocked physicians.
Julianna began voicing her misery and dislike of the medical care that keeps her alive so her parents asked her the unthinkable: to choose whether or not she wanted to continue medical care. Julianna’s parents gave her the choice of going back to a hospital the next time she got sick, a place where she has experienced extreme pain, or if she would prefer to go to heaven. Her mother described heaven as an idyllic place. Compared to being bed-ridden and unable to eat, heaven could easily be the preferable option to any young child, even the healthiest of children. While media portrayals tug at readers’ heartstrings and emphasize the perspective that allowing Julianna to refuse care was the only way to alleviate her suffering, many bioethicists have a different perspective on this story. Putting this story into the context of autonomous decision making, coercion, and capacity to consent, it is easy to come to the conclusion that this choice to Julianna is unethical.
Julianna began voicing her misery and dislike of the medical care that keeps her alive so her parents asked her the unthinkable: to choose whether or not she wanted to continue medical care. Julianna’s parents gave her the choice of going back to a hospital the next time she got sick, a place where she has experienced extreme pain, or if she would prefer to go to heaven. Her mother described heaven as an idyllic place. Compared to being bed-ridden and unable to eat, heaven could easily be the preferable option to any young child, even the healthiest of children. While media portrayals tug at readers’ heartstrings and emphasize the perspective that allowing Julianna to refuse care was the only way to alleviate her suffering, many bioethicists have a different perspective on this story. Putting this story into the context of autonomous decision making, coercion, and capacity to consent, it is easy to come to the conclusion that this choice to Julianna is unethical.
Onion bulb formations in a nerve biopsy in a case of Hereditary motor and sensory neuropathies (HMSN) type 1, the most common type of Charcot-Marie-Tooth Disease. Source: Jensflorian
An important barrier to an autonomous decision lies in the potential for coercion to impact Julianna’s decision. Although her parents only want the best for her, there is little doubt she is aware of how hard it is for them to watch her suffer. In addition to her suffering, her condition has caused a great financial burden to her family. Her father left his beloved job and serves as Julianna’s primary caregiver. Her mother highlights the constant stress of uncertainty on her personal blog. Even with a strong support system in place, Julianna can likely sense the stress her condition causes and this awareness could impact her decision.[1] When the option of refusing care is available, ensuring a choice can be made using only the judgment and desire of the single individual is difficult. An individual exists in a family and community and people are nearly incapable of disentangling their choice from the ripple effects their life has upon those around them.[2] Additionally, Julianna’s experience has been shaped by the discomfort of the care she received in the hospital. She equates the hospital with pain, not with living longer and receiving medical care. This pain is likely a constraint on her decision-making ability.[3]
Perhaps more concerning is Julianna’s age. She is five years old. Thus, Julianna’s ability to understand the consequences of refusing care and make an autonomous, informed choice is in question.[3] Julianna is legally underage, and, more importantly, her brain is developmentally unable to grasp the meaning of such a choice. Research has shown that the ability to understand death is not complete until eight or nine years of age.[4] Moreover, according to psychological research her religious beliefs regarding death, particularly her belief in heaven and the possibility of reuniting with deceased relatives there, is associated with a misunderstanding of the concept of death.[5] Although bioethicists value autonomomous medical decision making, Julianna is unable to give informed consent, which necessitates full understanding of the clinical situation and its consequences.[3] If a young child can refuse medical care, then why can’t a toddler make the same choice? Inconsistency in application of ethical rules and procedural expectations creates a slippery slope for future decision-making.[3]
The news article chronicles Julianna’s severe pain, overemphasizes the small amount of time she has left to live, and portrays a child with wisdom beyond that of any other five-year-old. Following media attention, Julianna has lived through months with pain, but they have also been months spent interacting with family and friends, playing dress-up, and experiencing life. Her life remains fulfilling and rewarding, which also suggests providing her the choice to refuse care is questionable. In the end, considering the facts of this case using bioethical precepts leads to the conclusion that providing Julianna with this choice is unethical.
References:
1. McCubbin, M. A. (1988). Family stress, resources, and family types: Chronic illness in children. Family relations, 37(2), 203-210.
2. Kittay, EF. (2011). Forever small: The strange case of Ashley X. Hypatia, 26(3), 610-631
3. Vaughn, L. (2013). Bioethics: Principles, issues, and cases. New York: Oxford University Press.
4. White, E., Elsom, B., & Prawat, R. (1978). Children's Conceptions of Death. Child Development, 49(2), 307-310.
5. Cotton, C. R., & Range, L. M. (1990). Children's death concepts: Relationship to cognitive functioning, age, experience with death, fear of death, and hopelessness. Journal of Clinical Child Psychology, 19(2), 123-127.
Ouellette, A. (2011). Bioethics and disability: Toward a disability-conscious bioethics. Cambridge: Cambridge University Press.
Sarrett, J., PhD. (2016, February 10). Infancy. Lecture presented in Emory University, Atlanta.
Vaughn, L. (2013). Bioethics: Principles, issues, and cases. New York: Oxford University Press.
[JS1]Can you tell if she is 5 now or 5 when they offered her the option or both?
Perhaps more concerning is Julianna’s age. She is five years old. Thus, Julianna’s ability to understand the consequences of refusing care and make an autonomous, informed choice is in question.[3] Julianna is legally underage, and, more importantly, her brain is developmentally unable to grasp the meaning of such a choice. Research has shown that the ability to understand death is not complete until eight or nine years of age.[4] Moreover, according to psychological research her religious beliefs regarding death, particularly her belief in heaven and the possibility of reuniting with deceased relatives there, is associated with a misunderstanding of the concept of death.[5] Although bioethicists value autonomomous medical decision making, Julianna is unable to give informed consent, which necessitates full understanding of the clinical situation and its consequences.[3] If a young child can refuse medical care, then why can’t a toddler make the same choice? Inconsistency in application of ethical rules and procedural expectations creates a slippery slope for future decision-making.[3]
The news article chronicles Julianna’s severe pain, overemphasizes the small amount of time she has left to live, and portrays a child with wisdom beyond that of any other five-year-old. Following media attention, Julianna has lived through months with pain, but they have also been months spent interacting with family and friends, playing dress-up, and experiencing life. Her life remains fulfilling and rewarding, which also suggests providing her the choice to refuse care is questionable. In the end, considering the facts of this case using bioethical precepts leads to the conclusion that providing Julianna with this choice is unethical.
References:
1. McCubbin, M. A. (1988). Family stress, resources, and family types: Chronic illness in children. Family relations, 37(2), 203-210.
2. Kittay, EF. (2011). Forever small: The strange case of Ashley X. Hypatia, 26(3), 610-631
3. Vaughn, L. (2013). Bioethics: Principles, issues, and cases. New York: Oxford University Press.
4. White, E., Elsom, B., & Prawat, R. (1978). Children's Conceptions of Death. Child Development, 49(2), 307-310.
5. Cotton, C. R., & Range, L. M. (1990). Children's death concepts: Relationship to cognitive functioning, age, experience with death, fear of death, and hopelessness. Journal of Clinical Child Psychology, 19(2), 123-127.
Ouellette, A. (2011). Bioethics and disability: Toward a disability-conscious bioethics. Cambridge: Cambridge University Press.
Sarrett, J., PhD. (2016, February 10). Infancy. Lecture presented in Emory University, Atlanta.
Vaughn, L. (2013). Bioethics: Principles, issues, and cases. New York: Oxford University Press.
[JS1]Can you tell if she is 5 now or 5 when they offered her the option or both?
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