Charlie Gard: The Courts Ruling on his “Quality of Life”

| July 6, 2017

The United Kingdom’s system of healthcare is under the National Health Service (NHS), which is a publicly funded, primarily through taxation, national healthcare system and is overseen by the Department of Health. The system provides healthcare to every legal resident in England, with most services free [1].  The CCGs (clinical commissioning groups) now commission most of the hospital and community NHS services in the local areas for which they are responsible. This involves deciding what services a population is likely to need and ensuring that there is provision of these services, thus taking away an individuals control of determining the type of healthcare they want to receive [2].

This is important because the Charlie Gard case has been fought over who has the right, either the parents or the Court, to decide what type of healthcare Charlie will receive.

Charlie Gard was born on August 4, 2016 with mitochondrial DNA depletion syndrome [3]. Theres is not cure for this disease, but the parents, Connie Yates and Chris Gard, were fighting for a clinical treatment that could prolong his life for about 3 months; however, they were denied the treatment by 3 different British courts: High Court, Court of Appeal, and Supreme Court of United Kingdom. So far the parents have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the United States, but are unable to use the funds because of the Courts denial to allow this treatment [4].

The United Kingdom’s Supreme Court’s decision considered the child’s best interest as the paramount (i.e. the only) relevant principle, and did not give sufficient weight to parental rights [5]. The Court further argued that it would be “inhumane and unreasonable” to prolong this child’s life and that the experimental treatment would be ineffective, which means it would be a waste of time and money. The hospital put out a statement that said, “Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests” [6].

This case calls into question the human rights and sanctity verses quality of life issue. . While the Court of Human Rights deemed the British ruling as humane or appropriate, the other courts defense was due to them deeming what Charlie’s quality of life is-which is not an appropriate term to use. When ruling that “prolonging his life would be inhumane,” they related it back to the Terry Schiavo case, where this woman was in a PVS (persistent vegetative state) and her husband had her feeding tube taking out because “it wouldn’t have been what she wanted” [7]. Terri’s case was an act of involuntary, active euthanasia, which also brings up the issue of quality of life because it has become the right of the court, an outside party, to establish who has quality of life and who doesn’t. This is a problem because we, as a society, do not have the right to declare someone else’s quality of life and are moving away from looking at a person’s sanctity of life.

Currently, the Great Ormond Hospital’s doctors agreed that Charlie has reached the stage where ventilation should be withdrawn “to die peacefully and with dignity” and has denied Charlie’s parents final wish to take him home while he lives out his final days [8].

 

 

 

[1] NHS Choices, 2016. About NHS, accessed on July 6, 2017. http://www.nhs.uk/NHSEngland/thenhs/about/Pages/overview.aspx

[2] NHS Clinical Commissioners. About CCGs, accessed on July 6,  2017. https://www.nhscc.org/ccgs/

[3] Jones, D., 2017. Judge says doctors can withdraw baby’s life support against parents’ wishes, accessed on July 6, 2017. http://www.catholicherald.co.uk/news/2017/04/11/judge-says-doctors-can-withdraw-babys-life-support-against-parents-wishes/

[4] Dan Bilefsky and Sewell Chan. Dispute Over British Baby’s Fate Draws in Pope and U.S President, accessed on July 5, 2017. https://www.nytimes.com/2017/07/03/world/europe/uk-trump-pope-francis-charlie-gard.html

[5] Savulescu, J., 2017. Debate: The fiction of an interest in death? Justice for Charlie Gard. practical ethics, accessed July 6, 2017. http://blog.practicalethics.ox.ac.uk/2017/04/debate-the-fiction-of-an-interest-in-death-justice-for-charlie-gard/

[6] Bilefsky and Chan. Dispute Over British Baby’s Fate Draws in Pope and U.S President.

[7] ABS News, 2006. Terry Schiavo Timeline, accessed on July 5, 2017. http://abcnews.go.com/Health/Schiavo/story?id=531632&page=1

[8] Bilefsky and Chan. Dispute Over British Baby’s Fate Draws in Pope and U.S President.