For years, the American Humanist Association and countless humanists across the country have advocated for the right of people with terminal illnesses or who suffer from chronic pain to end their lives with the assistance of qualified medical professionals. While humanists recognize that we only have one life to live, we also recognize that living in unbearable pain can be a horrible existence and that relief from this pain can be the greatest gift we can give to our loved ones.
But a recent news story has many advocates of assisted suicide questioning just who should be able to end their lives through assisted suicide or refusal of medical treatment. As CNN reports, a five-year-old child suffering from an incurable illness is currently refusing to return to the hospital because the pain from her treatments is greatly decreasing her quality of life.
The story is heartbreaking but also extremely concerning. Should a young child be able to make decisions about his or her medical treatment, especially if this treatment could extend the amount of time that child has to live? Does a child even understand the concept of death, and if not, are they still capable of making far-reaching medical decisions?
The child mentioned in the story seems to be at peace with her potential death, or at least what she understands of the concept of death. But a large part of that is due to religious teachings that her parents have instilled in her, teachings which humanists would argue aren’t true and are distorting the true impact of knowingly ending one’s own existence.
Take for example a discussion that was featured in the CNN report. The mother, Michelle, is speaking to her child, Julianna, about her future treatment and potential death.
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to heaven if you stay home?
Michelle: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.
Julianna: Don’t worry. God will take care of me.
Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.
Julianna: I understand.
Michelle: I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.
Julianna: That’s OK. God will take care of me. He’s in my heart.
This exchange is completely tragic and is the last conversation a parent ever wants to have with their child. But it’s important to note a few of the assumptions made in the conversation that play a major role in the decision-making process of everyone involved in this situation.
Julianna does not see the end of her life on Earth as the end of her existence. She believes, because of what her parents have taught her, that the death of her physical form will not be the death of “Julianna,” because Julianna will simply be waiting in heaven for a few years with her late family members until her parents join them.
Would Julianna feel so at ease with ending her life if heaven didn’t exist and if she simply faded into nothingness after death? This is a choice that all who seek physician-assisted suicide must face, but it’s one that they can at least understand because of their intellectual and emotional maturity. Julianna, being so young, is hardly likely to have experienced the existential crisis that arises from confronting one’s own mortality. Would Julianna be so willing to end her life and never see her family again if she understood that that is the true consequence of rejecting medical treatment?
This is not to say that Julianna must resume treatment and continue experiencing the excruciating pain that often accompanies medically necessary procedures. But attempts to justify the cessation of treatment because it is Julianna’s wish to do so should be rejected because five-year-old children are unable to completely understand the concept of death. As Dr. James Graham noted in Psychology Today, only after children reach ten years of age do they start to get a better understanding of death. According to Dr. Graham, “At ten years old, most children begin to understand that death is a universal, irreversible, and nonfunctional state (meaning that dead beings cannot do the things that the living do). Interestingly, even after children reach this level of understanding they might continue to struggle with the idea that death is final, possibly because of certain religious beliefs.”
While the preferences of the child should be noted, the decision regarding the continuation of medically-necessary treatment must be the responsibility of the parents, because they are the only ones who are truly capable of understanding the consequences of their choices (even if they happen to believe in some form of an afterlife). In this specific case, it appears as though the preferences of the parents and their child are similar, but similar cases continue to cause serious ethical quandaries, especially if the patient and their parents feel differently about the necessity of continued treatment.