In an age where almost any resistance to change is seen as narrow-mindedness and tolerance is held up as the greatest virtue, it is en vogue to classify resistance to post-modern ethical trends in Western medicine as backwards, outmoded, too traditional, and – perhaps the most common trope – insensitive; lacking empathy for human suffering. It is easy in such a climate to dismiss those who still employ all-but-eradicated phrases such as “sanctity of life” or see “dignity” as an inherent quality of a person, not just a legal right associated with the process of their death. In our brave new medical world of rapid technological advances and secular, utilitarian bioethics, we are conditioned to seek immediate solutions for health problems and ease for discomfort. For the most part those solutions are intended to prolong and improve life. But increasingly, they also facilitate ending it.
The sad story of little Charlie Gard made global headlines in recent weeks, as the desperate attempts by his distraught parents to save his life collided with the bureaucratic omnipotence of the British healthcare system. The Gard case provided ample opportunity for those of us immersed in the study of medical ethics to take stock of where we are; for those outside the medical community to become more aware of these issues; and, indeed, for both pro-choice and pro-life activists to reiterate their positions. Anyone who was surprised that the state dictated Charlie’s fate over the objections of his parents has not been paying attention.
In 2012, the prominent Journal of Medical Ethics published a controversial article by highly-regarded bioethicists Alberto Giubilini and Francesca Minerva titled “After-birth abortion: why should the baby live?” The abstract of their article read as follows:
“Abortion is largely accepted even for reasons that do not have anything to do with the fetus’ health. By showing that (1) both fetuses and newborns do not have the same moral status as actual persons, (2) the fact that both are potential persons is morally irrelevant and (3) adoption is not always in the best interest of actual people, the authors argue that what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.”
It was radical thinking, even for many supporters of abortion, to suggest that the answer to the dilemma of unwanted or inconvenient children, even perfectly healthy ones, should be the legalization of killing them. But in the bioethicists’ minds newborns are not fundamentally different from fetuses; they do not have the same moral standing as persons and even the fact that they are ‘potential persons’ is morally irrelevant. The authors do not suggest an age threshold after which newborns become persons, but rather say that a “right to life” and personhood is only awarded once the individual is capable of demonstrating the ability to attribute some meaning or value to one’s own existence, such that to be deprived of one’s existence would be experienced as a loss.
The Post-Natal Life Regulation Act?
As startling as this view may be for some and perhaps most people, it is an intellectually honest and logical extension of the pro-abortion argument that has been propounded for decades. It may be some time before laws proscribing the circumstances in which healthy children can be killed are initiated by legislators and validated by the courts, but the scientific and philosophical groundwork has been laid by devotees of secular, utilitarian, collectivist, and Malthusian bioethics. They dominate modern university bioethics programs, where students are taught to divorce ethics from morality. The former serves the public interest with proper procedures and distributive justice; the latter involves all-too-personal sentiments that have no business in the rational framework governing whether human beings should live or die.
Other prominent ethicists have advocated for limiting human life to the age of 75 and backed the concept of ‘duty to die’. While some limit their support for infanticide to those deemed genetically ‘unfit’ – Charlie Gard being a prime example – Giubilini and Minerva argued that the practice might be acceptable even in “cases where the newborn has the potential to have an (at least) acceptable life, but the well-being of the family is at risk.” They contend the risks to the well-being of the family include the “unbearable burden that a child can create for the psychological health of the woman or for her already existing children, regardless of the condition of the fetus.” While the authors concede that both the unborn child and the newborn are “human beings’”, they insist that neither has a right to life because they are “potential persons”, not actual “persons”.
Legalized infanticide has not (yet) been written into Canadian public policy, as it has in other countries, including, most notably, the Groningen Protocol in the Netherlands. But we are on a steep and slippery slope because, as Giubilini and Minerva rightly note, within our current bioethics culture there is no obvious philosophical argument against terminating a newborn who emerges with health liabilities that would have been reasonable grounds for abortion, if they were present or detected prior to birth. Birth is just as arbitrary a gestational marker as fingernail growth. The act of crossing the barrier of the womb does not have any transformative effect on personhood, as pro-lifers have long argued.
Even more tenuous is the personhood (or moral status) of infants born prematurely, commonly referred to as “neonates” or “preemies.” In Canada, which has had no law regulating abortion since a Supreme Court decision in 1988, and where even 35 week old fetuses are aborted for anomalies that pose no medical threat to fetus or mother, what are we to do with the 23 week neonate, born unexpectedly, weighing hardly a pound, who requires a lengthy stay in intensive care and may develop cerebral palsy or other disabilities? Who, were she still in the womb, could be aborted for any reason? The question answers itself, no doubt more often than not in hospitals across Canada.
Charlie was all cost, no benefit
Utilitarianism is well-entrenched in the Canadian and other western socialized healthcare systems through such metrics as quality-adjusted-life-years (QALY), disability-adjusted-life-years (DALY), and the complete lives system. All offer a cost-effective way of reducing human suffering: eliminate the sufferer. The British National Health Service appraises the lives of patients and the value of treating them using the QALY cost-utility analysis. It is essentially a metric to determine how much money may reasonably be spent on an individual’s medical care, given his degree of illness, age, and chance for survival, and, especially, how much money would be spent on said care and thus depleted from the funds available for all patients within the government system. It is not difficult to imagine how Charlie Gard fared in this cost analysis. He was born with a rare incurable illness called mitochondrial DNA depletion syndrome. It attacks the brain and causes muscle failure, which progresses quickly and usually leads to death in infancy. Although doctors at the Great Ormond Street Hospital in London initially offered to try experimental treatment, they soon concluded it was hopeless and decided to let him die. Charlie’s parents went to court seeking a reprieve, and a chance, for their son, but to no avail. And when the American doctor who had raised their hopes for an experimental treatment withdrew his offer, they tearfully capitulated to the will of the court-backed medical establishment and agreed to the removal of Charlie’s mechanical life supports. He died on July 28, a week before his first birthday.
Had the Gards lived in Canada or the United States, they would have been subject to similar bureaucratic cost-benefit calculations and the outcome probably would have been the same. Obamacare was modelled on the British system. One of its primary architects was Dr. Ezekiel Emanuel, who set out the rationing model for socialized American medicine in a paper published more than 20 years ago:
“Communitarians endorse civic republicanism and a growing number of liberals endorse some version of deliberative democracy. Both envision a need for citizens who are independent and responsible and for public forums that present citizens with opportunities to enter into public deliberations on social policies.
This civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. Procedurally, it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed. Substantively, it suggests services that promote the continuation of the polity – those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations – are to be socially guaranteed as basic. Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed.”
It’s clear that Emanuel’s conception of “the good” is rooted in the ideologies of communitarianism (which favours the communal over the individual) and liberalism for the benefit of “citizens who are independent and responsible.” His evident meaning is that healthcare resources ought to be allocated to individuals who are judged sufficiently independent and responsible. Many handicapped elderly people would not meet this standard, nor would many premature or newborn infants with developmental disabilities. The former may be past the point of being a “participating citizen” and the latter may never become a one. Another way to put it might be “expendable.”
Maybe in dog-eat-dog America, you say, but unthinkable in caring-and-sharing Canada. Sorry, but no less an authority than the influential Canadian Neonatal Network of physicians and researchers accepts as a matter of policy the presence or possibility of disability in preemies as justification for optional intervention. No wonder some Canadian studies have found a bias among healthcare providers against premature infants and an unreasonable pessimism as to the benefit of neonatal intensive care.
Low class babies
In contemporary bioethics full-term newborns occupy yet another “special moral category.” It entitles them to a little more treatment than pre-born or premature babies, and a little less than older children. In Charlie Gard’s case, nobody, including his parents, had any illusions about a cure. As the court ruling against the nucleoside experimental treatment he was offered states, it could not “reverse structural brain damage…medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.”
The ruling was blind to the fact that other children with variations of the same condition Charlie had have been treated, not for the purpose of reversing existing damage, but to alleviate symptoms and ease discomfort. Moreover, the court ignored the commonly accepted practice of allowing parents to enroll their terminally ill children into pediatric oncology Phase 1 clinical trials where almost no prospect of direct benefit is offered or expected. In Charlie’s case, the courts defined ‘benefit’ exclusively as the reversal of structural brain damage. Even for a health and legal system deeply wedded to utilitarian medical ethics, the Gard ruling seemed exceptionally narrow, rigid, and ruthless.
Pope John Paul II’s 1995 Evangelium Vitae encyclical stated that where no ordinary treatment exists that is “objectively proportionate to the prospects for improvement […] to forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death.” In Charlie’s case, the prospect for improvement was defined not in terms of him as an individual, but in terms of his utility and priority compared to others within the healthcare system. The court did not cite his imminent death to justify ordering him into palliative care. Instead it offered allusions and casual references to his brain function and quality of life. The ruling evaded questions regarding whether and how Charlie’s condition might have been improved, evidently swallowing whole the assertion of the Great Ormond Street Hospital medical team that Charlie could not be made any better off by continued treatment and was, instead, at risk of being made worse because “being ventilated, being suctioned, living as Charlie does, are all capable of causing pain.”
Yet it is widely understood that the discomfort and potential pain of these procedures can all be remediated by sedation. For Charlie’s condition, the proportionate treatment was never going to be a cure and reversal of structural brain damage, but rather a treatment that respected his parents’ wishes and could, as it has for other children with a variation of the same rare disease, have improved his quality of life for however long he had.
The overwhelming tone of the Gard ruling was that this life, a life of mental disability and irreversibly damaged brain function, was not worth saving. We ought to find this view reprehensible, but many if not most of us do not. And that is the larger point here. Wealthy, advanced western countries like the U.K., the U.S. and Canada – countries which pose as paragons of tolerance and diversity and support for the less fortunate – all subscribe to an increasingly calculating and ruthless ideology of medical ethics that is diminishing the quality and value of life. Every day, health providers in our socialized medical systems make life-or-death decisions about their patients based on utilitarian cost-benefit calculations and subjective judgements about quality of life, both heavily influenced by how young or old the patients are. Among other things, they decide whether or not a premature infant, even those with high survival rates in intensive care, will live or die. They make similarly lethal decisions about babies with disabilities, whether present or predicted, that aren’t imminently fatal. The ethicists they look to for guidance on these decisions reliably inform them to err on the side of efficient, mechanical utility, which they are relentlessly expanding at the expense of anachronistic ideals like sanctity of life.
We have come a long way down this road and the reaction to the Gard case, from the healthcare system, the courts and the public, is another step towards a day when the lives of the disabled not only not worth saving, they’re not even worth grieving.