The healthcare insurance reform debate has rightfully consumed a great deal of attention from the American People. Amid Republican efforts to put their spin on Obamacare, however, a story about a dying baby in Britain and the decision of healthcare providers to deny him care caught the attention of the world, which prompted offers for medical aid from the likes of the Vatican and the Trump Administration. After a lengthy legal battle revolving around parental rights, patient advocacy, and healthcare rationing, 11-month-old Charlie Gard succumbed to the rare genetic disorder, known as MMDS, that affected his brain and muscles.
Healthcare providers at the Great Ormond Street hospital, as well as outside experts, determined no viable healthcare options existed for Charlie. His parents had hoped to explore experimental treatment in the US, but the British Courts decided to support the conclusions of healthcare providers. In Britain, healthcare is provided to citizens with little to no direct costs, so Charlie’s care was never an issue of the parent’s ability to pay for his care. His parents were even able to raise the millions required to pay for his treatment in the US. Although healthcare, especially for the elderly, is rationed in Britain based on the anticipated outcome of treatment, versus cost, the Charlie Gard decision was allegedly rooted in the moral issue of quality of life.
For parents Chris Gard and Connie Yates, the fight to keep their son alive was more than just a medical and legal battle. Clearly, a terminal diagnosis is traumatizing to child and parents alike, especially when the patient is a baby. For healthcare providers, who are supposed to heal the sick, and the justice system, which is supposed to protect people, to decide a terminally-ill child has no hope is beyond devastating. To deny the parents the ability to seek healthcare elsewhere then, further, to deny the parents the right to choose where and when their child is allowed to die, must have left the couple feeling thoroughly helpless and unsupported. In short, they probably felt like victims of big medical and big government.
In the US, even when it comes to the most dire cases, anyone who can find anyway to pay for available medical care will be treated. Healthcare providers will spend countless hours and fortunes to keep terminally-ill patients alive for mere moments. Death is something most people fear. The extraordinary measures and resources devoted to keeping people alive, even when there is no real chance for survival, is as much about saving a life and as it is about reassuring others that everything will be done to mitigate the risk of unnecessary deaths. In places like the US, the unwillingness to say no to medical treatment is the product of an unwillingness to give up on anyone, even those who want to die.
In places like Britain, and for certain people, quality of life, matters more than the preservation of life. As a society, Britain decided through public policy that quality of life matters as much as quantity of life. The Charlie Gard decision was a natural consequence of previous public policy decisions. For a liberal society, which prioritizes individual rights over cultural rights, the notion that healthcare decisions are communal issues is already difficult to understand and accept. Because healthcare policies require a communal response, the highly liberal US, in particular, has a difficult time confronting difficult issues like healthcare rationing, affordability and social responsibility.
Legal battles like the closely covered Terri Schiavo “Right to Die” case demonstrate how Americans tend to slightly favor arguments for prolonged life over arguments against prolonged suffering. In Britain, the healthcare providers of Charlie Gard and the Courts were far more concerned about the suffering of Charlie than securing a few more moments of life for the sake of his parents. From the parents perspective, prolonging his life meant a cure might be found. Charlie’s suffering was a moral issue, but the conclusions reached by healthcare providers and the Courts were based on sound logic and reflected sound economic policy. Life and death are, however, moral issues that cannot be solved with logic and economics.
Government, Law, and Medicine are social institutions that exist to serve and protect members of society. They exist to carry out the collective will and address the collective interests of the People. Whether discussing a courtroom or a hospital administration, governing institutions do not exist to make moral decisions. Experts and leaders can come together to make ethical arguments and establish ethical standards, yet they are ill-equipped to make moral judgment, especially for other people. In fact, no one is truly equipped to make moral judgments. An end of suffering versus an end of life as a moral question cannot be answered by people. The most practical course of action in case like Charlie Gard is, therefore, to take the least reversible decision until a compromise can be reached by those involved.
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