This is a follow-up from an earlier article: http://www.vabioethics.com/content/2017/5/2/court-overrules-parents-wishes-for-dying-baby?rq=samuel%20case
For several months, Charlie Gard has been the subject of a prominent legal case, in which his parents, Chris Gard and Connie Yates, were fighting for the right to take the dying infant to the US to participate in a medical trial. On July 28th, after 11 months of fighting his condition, Charlie sadly passed away [1]. Charlie suffered from encephalomyopathic mitochondrial DNA depletion syndrome, which had paralyzed him and damaged his brain. While in the hospital, medical officials had argued that Charlie’s quality of life, or lack thereof called for end of life care [2]. His parents, on the other hand, wished to give him one last chance through the US medical trial. On July 24th, Gard Sr. and Yates decided to end their legal efforts. Two days later, they agreed to place Charlie in a hospice for end of life care [3]. The decision was heavily influenced by the US doctor leading the medical trial, who advised the parents that it was too late to effectively enroll Charlie in the experiment. At the time, Gard Sr. and Yates were aware that Charlie would not make it to his first birthday on August 4th [4].
From the start to the end of Charlie’s life, this case has been swarming with ethical questions. Onlookers questioned who should have the power to make medical decisions for infant Charlie; the contending parties included his parents, the hospital, and an independent judge [5]. In the U.K., neither party can make an absolute, independent decision, which explains the various court cases and appeals [2].
One could argue that this process ultimately defeats itself, as the final decision was almost forced on Gard Sr. and Yates by the very fact that the legal proceedings took such a long time. If a decision had been reached sooner, Charlie may still have been eligible for the medical trial in the U.S. A rash decision, however, may have been just as condemning. It could also be argued that the intensity and length of the debate ensured Charlie received the best possible guidance and care. With consideration from the hospital, parents, and legal counsel, the process succeeds in approaching the problem from all angles.
Alternative possibilities include allocating the decision entirely to one party, whether that be the parents or the hospital. In comparison with the existing approach, neither option holds much promise. In the hands of the parents, the situation threatens to be overly impacted by emotion and lacking in rationality. In the hands of the hospital, rationality dominates and, in removing elements such as hope from the equation, risks devaluing the life of the individual in question. Evidently, this argument only exists because Charlie was unable to make his own decisions. From there, one seeks a well-advised and fully-informed party with Charlie’s best interests at heart. In this case, the child’s parents undoubtedly wanted the best possible outcome for him in terms of duration and quality of life. How well-advised they were, however, was occasionally in doubt. Dr. Michio Hirano, who introduced the Gard family to his medical trial in the US, was making the recommendation based on unpublished data. Furthermore, he had stated that the experiment should be performed on mice before expanding to humans [1]. Consequently, it may not be so heartless to side with the hospital’s decision to withhold Charlie from the trial. After all, it may have placed him in even more danger and pain that he was already in.
In reflection of a life too short and too troubled, the legal proceedings surrounding Charlie’s case succeeded in securing the best possible outcome for the 11 month-old. The odds of the medical trial achieving a miracle seemed extremely low, especially due to the fact that the experiment had never before been performed on humans. While the judge’s decision essentially confined Charlie to death in the near-future, it allowed him to receive maximum care and comfort in his final days. Following the immediate aftermath, the parents will likely come to terms with the reality of their child’s life and appreciate the peace with which he passed.
References:
1. “Charlie Gard parents announce death of ‘beautiful boy.’” BBC News. July 28th, 2017. Accessed July 28th, 2017. http://www.bbc.com/news/uk-england-london-40752120
2. “The tragic case of Charlie Gard.” BBC News. July 28th, 2017. Accessed July 28th, 2017. http://www.bbc.com/news/health-40752061
3. Domonoske, Camila. “Terminally ill baby Charlie Gard will move to hospice care to die.” NPR. July 27th, 2017. http://www.npr.org/sections/thetwo-way/2017/07/27/539754960/terminally-ill-baby-charlie-gard-will-move-to-hospice-care-to-die
4. “Charlie Gard parents end legal fight for ‘beautiful’ baby.” BBC News. July 24th, 2017. Accessed July 26th, 2017. http://www.bbc.com/news/uk-england-40708343
5. Shapiro, Ben. “The Charlie Gard story exemplifies the left’s war on parents.” National Review. July 26th, 2017. Accessed July 26th, 2017. http://www.nationalreview.com/article/449837/charlie-gard-parents-not-state-should-decide-treatment