![\"\"](\"http:\/\/consistent-life.org\/blog\/wp-content\/uploads\/2017\/08\/1-blog-hospital-300x225.jpg\")
Great Ormond Street Hospital for Children<\/p><\/div>\n
Charlie\u2019s case attracted international attention and generated a surprising degree of controversy among pro-life opponents of euthanasia\/assisted suicide, some of whom disagreed about the correct course of action in this situation (see the varying assessments of Jana Bennett<\/a>, Charles Camosy<\/a>, Simcha Fisher<\/a>, Austen Ivereigh<\/a>, Michael Redinger<\/a>, and the Anscombe Bioethics Centre<\/a>). These differing opinions were understandable given the case\u2019s complexity. My own judgment is that Charlie\u2019s parents should have been allowed to pursue that experimental treatment. The right course of action was by no means obvious, however, and neither side was necessarily approaching Charlie\u2019s treatment in a way pro-lifers should wholly support.<\/p>\n Charlie\u2019s Situation<\/strong><\/p>\n Charlie’s medical situation was described in the first major court ruling on the case<\/a>, on April 11. Charlie, born August 4, 2016, was diagnosed with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). This condition is extremely rare: an expert said Charlie\u2019s case is one of only six pediatric cases she\u2019s encountered. Infant onset is still rarer. Charlie\u2019s condition had left him without the ability to move his arms or legs, open his eyes, or breathe on his own. He was dependent on a ventilator to breathe, and was deaf. Tests didn\u2019t show signs of responsiveness, interaction, or other normal brain activities. Charlie also began, to suffer from seizures, indicating brain function deterioration.<\/p>\n Charlie\u2019s parents learned of nucleoside therapy from Dr. Michio Hirano, an American professor of neurology at Columbia University Medical Center. It\u2019s apparently had some success with a related mitochondrial disease, TK2. Yet it\u2019s never been tried on humans or animals with Charlie\u2019s condition . Dr. Hirano\u00a0 said it\u2019s \u201cvery unlikely that [Charlie] will improve with that therapy.\u201d<\/p>\n Moreover, Dr. Hirano and the expert representing the hospital agreed Charlie\u2019s condition was likely terminal. Hirano commented \u201cI think he is in the terminal stage of his illness. \u201d The hospital expert said Charlie\u2019s seizures suggested death might be six to nine months away.<\/p>\n The court found in favor of the hospital\u2019s \u00a0application to remove the artificial ventilation and provide palliative care only, with Charlie\u2019s death likely to follow. Charlie\u2019s parents continued their challenges through the British court system and to the European Court of Human Rights. The courts consistently found for \u00a0the hospital and against Charlie\u2019s parents, before the parents finally gave up their legal efforts on July 24.<\/p>\n European Court of Human Rights<\/p><\/div>\n Principles for Defending Life<\/strong><\/p>\n Appropriate pro-life principles should guide medical care for disabled or seriously ill people:<\/p>\n A Question of Intent<\/strong><\/p>\n Given both Charlie\u2019s condition and these principles, what would have been appropriate? Reasonable arguments could be made for different approaches. Because multiple doctors thought Charlie\u2019s condition might be terminal and the therapy unlikely to work, foregoing the therapy and removing the ventilator could be justified: the therapy was futile and the ventilator merely delayed inevitable death, possibly causing Charlie pain. Nevertheless, an argument could be made for the opposite approach. While unlikely to work, nucleoside therapy doesn\u2019t appear to be inherently inhumane or painful , and keeping Charlie on the ventilator long enough at least to try the therapy could be justified.<\/p>\n Another consideration is the question of intent. Regardless of which approach was adopted, what was the rationale? The question is important because of a subtle distinction in why certain medical decisions might be made. This distinction was highlighted<\/a> by Charles Camosy, a theology professor at Fordham University and Consistent Life Network endorser. His analysis and the statement of the Anscombe Centre, a Catholic bioethics organization (cited above) both inform my comments below.<\/p>\n To decline further medical treatment or remove life-sustaining equipment because they\u2019re burdensome to the patient and don\u2019t offer enough benefit is an acceptable choice. What isn\u2019t acceptable, however, is to do so because the patient\u2019s life is judged, for whatever reason, to be no longer worth preserving.<\/p>\n This unacceptable approach to medical care is sometimes defended by use of that slippery phrase \u201cquality of life.\u201d<\/p>\n Judging a person\u2019s life to be of such low quality as not to be worth maintaining is wrong. Such a rationale opens the door to lethal discrimination against people with chronic illness or severe disabilities. Someone\u2019s life has value even if that person is immobile, dependent on machines, unconscious, or in pain. Withholding or withdrawing medical treatment because a person\u2019s life is deemed not worth preserving would qualify as\u00a0 euthanasia. Distinguishing between euthanasia and the legitimate refusal of burdensome or futile treatment, while difficult, is necessary.<\/p>\n Therefore, the April 11 ruling on Charlie\u2019s case is disturbing. The judge, Mr. Justice Francis, cited previous court rulings. One held \u201cit is not in the interests of the child to subject it to treatment which will cause it increased suffering and produce no commensurate benefit\u201d\u2014a reasonable stance. Another held the need to prolong life \u201cmay be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering or other burdens of living are sufficiently great\u201d\u2014a far more problematic position<\/p>\n A doctor whose opinion on Charlie\u2019s condition was solicited said, \u201csadly, Charlie\u2019s life is therefore limited both in quality and quantity and there is no reasonable prospect for recovery.\u201d Francis characterized the doctor\u2019s opinion: \u201cin his view, the severity of his condition is such that it could be argued that Charlie would derive no benefit from continued life.\u201d A similar view came from the hospital\u2019s recent statement: \u201csince his brain became affected by [his particular condition], Charlie\u2019s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.\u201d These statements raise serious concerns about whether the choice of foregoing therapy and removing Charlie\u2019s ventilator was made for the right reasons.<\/p>\n What complicated matters further\u2014and prevented this from being merely a contest between a \u201cright\u201d and \u201cwrong\u201d approach\u2014was that Charlie\u2019s parents appeared to accept the notion that his quality of life didn\u2019t justify preserving his life. In the April 11 ruling, Chris Gard said \u201cWe would not fight for the quality of life he has now . . .\u00a0We truly believe that these medicines will work. After three months we would want to see improvement and, if there wasn\u2019t, we would let go. This is not the life we want for Charlie.\u201d In the statement Charlie\u2019s parents made announcing the end of their legal efforts, they commented \u201cHe still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie\u2019s muscles have deteriorated to the extent that it is largely irreversible . . . Were treatment to work, his quality of life would now not be one which we would want for our precious little boy.\u201d<\/p>\n While Charlie\u2019s parents, the hospital staff, and the judge might simply have been imprecise in their language, these statements leave the impression that none of the parties involved approached Charlie\u2019s case with entirely correct principles in mind.<\/p>\n Teaching about Respect for Life<\/strong><\/p>\n If we grant that either<\/em> pursuing nucleoside therapy or<\/em> foregoing it and removing Charlie\u2019s ventilator could be justified, then Charlie\u2019s parents should have been permitted to decide. Their parental rights should have taken precedence if there were no clearer reasons to prefer one course of treatment over the other. By refusing the parent\u2019s wishes even in the face of their legal challenges\u2014and obvious emotional torment\u2014 the hospital acted wrongly.<\/p>\n Nevertheless, both Charlie\u2019s parents and the hospital made statements suggesting neither were guided by respect for life regardless of disability or illness. To view the case as a clear-cut struggle between those who championed life and those who didn\u2019t may be an oversimplification.<\/p>\n One important lesson may be that to prevent another Charlie Gard case, pro-lifers not only need to consider reforms of laws or hospital policies, but also clearer public education on what principles and approaches to medical treatment are consistent with respecting life.<\/p>\n ========================================<\/p>\n <\/p>\n For a more general blog post on how to tell when euthanasia happens, plus connections to other consistent-life issues, see:<\/em><\/p>\n Figuring out Euthanasia: What Does it Really Mean?<\/span><\/span><\/a><\/span><\/p>\n \u00a0<\/span><\/span><\/p>\n <\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" by John Whitehead The legal battle over the treatment of Charlie Gard, a gravely ill baby in the United Kingdom, recently ended. Charlie\u2019s parents, Chris Gard and Connie Yates, and the Great Ormond Street Hospital disagreed over whether to pursue an experimental medical treatment. The parents had wished to pursue the treatment, while the hospital… <\/p>\n![\"\"](\"http:\/\/consistent-life.org\/blog\/wp-content\/uploads\/2017\/08\/1-blog-court-300x169.jpg\")
\n