“We’ve had no control over our son’s life and no control over our son’s death,” said Connie Yates in a statement on July 28, the night before her son, Charlie Gard, was taken off life-support and died (qtd. in Bilefsky, 2017, p. A6). This quote neatly summarizes a tragic case that captivated the world this past summer, from protesting U.K. citizens to the Pope and the U.S. President. Charlie Gard was an 11-month-old baby who, born in the U.K. with a genetic mitochondrial condition, ignited a fierce bioethical debate when the hospital caring for him decided life-support should be withdrawn. Gard’s parents, hoping that an experimental treatment in the U.S. could provide the antidote to help their son, disagreed with doctors. However, with the support of the U.K. High Court, the doctors were given approval for such actions. Ultimately, through months of appeals to both the High Court and the European Court of Human Rights, Gard’s parents were unsuccessful in gaining the opportunity to continue their son’s life. In overriding the desires of Gard’s parents, the U.K. government poses an important question. (Goldschmidt and Clarke, 2017). What control should the government have in making medical decisions for children?
“We’ve had no control over our son’s life and no control over our son’s death”
In many cases, the intervention of the government is not only important and right, it is necessary for a child’s health and survival. When parents are being neglectful and irresponsible and are not acting in the best interests of their children, their wishes are no longer important and the government has every right and is obliged to get involved. For example, in 2014, the U.K. government overruled the wishes of parents who refused a blood transfusion for their ill son due to their subscribing to certain religious beliefs from the Jehovah’s Witness faith (Press Association). The U.S. even has specific laws regarding the treatment of children for situations when the religion of parents may put them in danger: “Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves,” states the Opinion of the Court from the Supreme Court Case Prince v. Massachusetts (1943). In other times, parents have refused chemotherapy for their children even when this treatment has been proven to be effective. In 2009, in a case involving Daniel Hauser, a 13-year-old with a cancerous tumor, judges ruled that, though his parents disagreed, Hauser must undergo chemotherapy (Cooper and Davis). In these times when a child is in danger or suffering, it is clear that the government should negate the autonomy of guardians in their child’s health and care.
The case of Gard is much more complex and does not clearly meet the criterion above that many see as necessary for government intervention. Gard’s doctors were not entirely convinced that the experimental treatment his parents were pursuing would not cause harm or discomfort – but they really had no way to know. However, assuming no suffering on Gard’s end, we are left wondering what role the government should have in overruling parents in ending a life. If a child is not suffering, the government should not rule for such support to be withdrawn and should not be involved in such decisions. Parents may choose to keep a child alive with the hope of a new treatment getting developed or because, emotionally, it is too difficult to let go. However, whatever their motivation is for holding on is not significant; what is important is that they can. Thus, I feel the U.K. High Court was morally wrong in their decision to end Gard’s life against the wishes of his parents, assuming Gard was not suffering.
However, without truly knowing if Gard was suffering, it is much harder to decide who – the government and hospital or the parents – was more morally correct. Without such information or evidence of Gard being in pain, it is more difficult to make a decision about prolonging or ending his life. Ultimately, if doctors have reason to believe a child could be in pain and there are few current options for treatment, the child can be considered in danger, and, at that point, as discussed above, the government should become responsible for the child’s care – even if this means withdrawing life-support.
Without truly knowing if Gard was suffering, it is much harder to decide who – the government and hospital or the parents – was more morally correct.
Due to the widespread attention this story received, many scholars and professors of ethics have weighed in. In his analysis, Julian Savulescu, Professor of Medical Ethics at Oxford Dominic Wilkinson and Professor of Practical Ethics at Oxford, stated in a joint article that this case leaves us the need for a better idea of what a child being in danger really means: “The challenge, of course, and here there needs to be much more work, is in defining what constitutes a sufficient level or chance of harm to justify overruling parents.” (2017). Many consider other questions that arise in light of this case. Robert Truong, Professor of Medical Ethics at Harvard, used this case to explore the issue of whether patients should be able to receive any treatment that they can pay for despite the safety of the treatment (2017). The debates surrounding this case will likely continue for years to come, showing that, as Gard’s mother said, “[Gard] had a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime” (qtd. in Bilefsky, 2017, A6).
Bilefsky, D. (2017, July 29). Incurably ill baby dies in Britain, and issues of medical ethics linger. New York Times, A6. Retrieved from https://www.nytimes.com/2017/07/28/world/europe/charlie-gard-dead.html?_r=0
Cooper, A., & Davis, C. (2009, May 26). Judge orders chemotherapy for 13-year-old cancer patient. Retrieved October 31, 2017, from CNN website: http://www.cnn.com/2009/US/05/26/minnesota.forced.chemo/index.html
Goldschmidt, D., & Clarke, H. (2017, July 29). Baby Charlie Gard dies after life support withdrawn. Retrieved October 31, 2017, from CNN website: http://www.cnn.com/2017/07/28/health/charlie-gard-death/index.html Press Association. (2014, December 8). Judge rules Jehovah’s Witness boy can receive blood transfusion. Retrieved October 31, 2017, from The Guardian website: https://www.theguardian.com/world/2014/dec/08/judge-rules-jehovahs-witness-boy-blood-transfusion Prince v. Massachusetts (Dec. 14, 1943).
Truog RD. The United Kingdom Sets Limits on Experimental Treatments The Case of Charlie Gard. JAMA.2017;318(11):1001–1002. doi:10.1001/jama.2017.10410
Wilkinson, D., & Savulescu, J. (2017, July 24). Hard lessons: Learning from the Charlie Gard case. Retrieved October 31, 2017, from Practical Ethics website: http://blog.practicalethics.ox.ac.uk/2017/07/hard-lessons-learning-from-the-charlie-gard-case/