In political science, there is a concept known as the “Overton Window.” Named after the professor who first suggested it, the idea is that the public discussion or advocacy of policies must take place within a range of opinions that are generally accepted by society as legitimate. If you argue for ideas outside that range, you are likely to be denounced as an “extremist.”
But the window isn’t fixed forever. Advocates can drag the boundaries in their favored direction; eventually, ideas that once seemed extreme or unthinkable become part of a “new normal.”1
For decades, arguments in favor of infanticide were well outside the Overton Window and were largely limited to academic circles. The infamous Prof. Peter Singer of Princeton was the most prominent example of a scholar who relied on utilitarian ethics to justify the killing of unwanted infants, particularly those with disabilities.2
For most people outside the ivory tower, infanticide was still unthinkable. But things are changing in the wake of the increasing pressure to legalize doctor-assisted suicide and euthanasia in the United States, and the revelation of how far things have gone in countries that have already done so.
In October 2022, people were startled to hear the head of an organization of Canadian doctors speak openly and approvingly about eugenic infanticide. In testimony before a parliamentary committee studying “medical aid in dying,” the doctor first focused on “emancipated minors” whose “suffering may become intolerable and it may no longer make sense in certain situations.” That was remarkable enough, but then he added,
The same is true for babies from birth to one year of age who come into the world with severe deformities and very serious syndromes for which the chances of survival are virtually nil, and which will cause so much pain that a decision must be made to not allow the child to suffer. In that respect, the committee highlighted the Netherlands’ and other countries’ experience. This avenue could be explored.3
The Overton Window has clearly shifted.
In fact, without anyone realizing it, eugenic euthanasia of disabled children is already permitted by inadequacies in American law.
This is happening to babies born close to the edge of viability and to full-term babies who have a severe disability or require extensive medical care to sustain their life. We are not talking about when an abortion accidentally results in the birth of a living child, who is then left to die from neglect—or directly killed.4 These are deliberate “mercy killings” of infants with disabilities, often by denying them nutrition and hydration.
How can it be legal to kill such vulnerable babies? Because there are critical loopholes in the laws protecting disabled newborns. Because the medical community ignores the federal law that was designed to prevent it. Because the government has not strengthened that law despite clear evidence that it hasn’t worked. And because the cultures of medicine and society are rife with anti-disability discrimination and an attitude that all suffering must be eliminated.
First, let’s define terms. Euthanasia is the intentional termination of a patient’s life because the doctor believes that death will benefit the patient. The usual justification for this is that the patient is experiencing unacceptable suffering, thus the term “mercy killing.”
Euthanasia can happen in two ways. One is by “passive euthanasia,” the deliberate withholding of life-sustaining treatments with the specific intent of causing death.5 The second is by “active euthanasia”—intentionally and directly causing death, for example by giving a lethal dose of sedatives (so-called “terminal sedation”).6
Euthanasia is not the same as forgoing life-sustaining treatments that are disproportionate or extraordinary, which may occur when the reasonably expected benefits of the treatment are outweighed by the burdens. 7 By forgoing disproportionate treatment, the underlying mortal illness is allowed to take its natural course.8
The issue of assisted nutrition and hydration is the real test. Nutrition and hydration are different in nature, not merely in kind, from other medical interventions like surgery, because they address a basic human need, something that is essential to life. Fulfilling such needs is inherent in respect for human dignity.9 It is thus a category error to treat nutrition and hydration in the same way as other medical treatments.
In the case of the neonate, it is worth remembering that for the past nine months she had been provided with assisted nutrition and hydration in her mother’s womb. And over in the maternity unit, nutrition and hydration are routinely provided by breastfeeding or bottle-feeding. Nobody would consider those to be “life-sustaining treatments,” and everyone would consider it a grave violation of moral and legal duty to withhold them.
These distinctions about duty, causation, and intention are essential to understand how the law can permit infant euthanasia. Legal standards play out very differently in a sanctity of life ethos than they do in a quality-of-life ethos. Under the former, there is a duty to provide nutrition and hydration and to assess treatments based on their burden and benefit to the patient’s current condition. Under the latter, any treatment can be withheld or withdrawn in the interest of “quality of life.”
Distinctions over causation and intention are critical in applying the law. But laws are not applied in a vacuum. They must be implemented in a context of medical practice and bioethics. That is the problem.
The Corruption of Medical Ethics
Whether euthanasia (or other anti-life acts like abortion) is legally permitted depends on the prevailing theory of medical ethics.
Bioethics based on sanctity of life would be patient-centered and dedicated to preserving life and dignity. This approach is, of course, heavily influenced by the religious teaching of Christianity, but it was also accepted in medical ethics more generally.
In this paradigm, ethical principles like beneficence (do good for the patient) and non-maleficence (“do no harm”) would lead doctors to use all reasonable means—short of eliminating the patient—to alleviate suffering. Since all lives are considered to have equal value, every patient would be treated equally without discrimination based on characteristics or capabilities. Basic care like nutrition and hydration would be required as a matter of principle and evaluated differently from other treatments.
Consequently, any deliberate taking of life, either by act or omission, would clearly violate the principle that life is an intrinsic good. This would include suicide and euthanasia (active or passive).
In the last half century, however, bioethics has become thoroughly secularized and now openly rejects any religious influence. As a result, the sanctity of life principle has largely been replaced by a “quality of life” ethos. Life no longer is seen as having intrinsic worth. Instead, the value of a life depends on its perceived quality, particularly on the cognitive and physical ability to have meaningful experiences and relationships. Those who lack certain levels of those characteristics are deemed less worthy of treatment, and in some cases are not even considered “persons.”10
Absolute patient autonomy has become the predominant standard for decision-making. Competent patients have the legal right to accept or reject any kind of medical intervention, including nutrition and hydration—even if it means deliberately committing suicide by starvation or dehydration.11 This self-euthanasia has already garnered its own euphemism—“voluntary cessation of eating and drinking.” Surrogates are legally permitted to exercise this “right” on behalf of an incapacitated patient—or a minor.12
As Prof. Charles Camosy demonstrates in his book Losing Our Dignity: How Secularized Medicine Is Undermining Fundamental Human Equality, this has led to a fundamental and dangerous corruption of bioethics.13 The result has been that people with disabilities are considered less worthy of care and treatment, and therefore excluded from ordinary legal protections, in violation of their basic human right to equality.
Another development is that bioethicists and the medical profession now consider assisted nutrition and hydration to be indistinguishable from any other life-sustaining treatment.14 No longer treated as a unique form of care to satisfy basic human needs, assisted nutrition and hydration are evaluated the same way as any other intervention to cure or ameliorate physical dysfunction.15 As a result, under the quality-of-life ethic, they can be withheld or withdrawn if a decision-maker deems the child’s future to be unduly burdensome to herself or others.
When the quality-of-life ethos combines with ideals of absolute autonomy, the danger to vulnerable people is palpable, and the law does not provide sufficient protection. To see this, we first need to look at the pervasive social bias against people with disabilities.
Ableism and Eugenics
In 2019, the United Nations Special Rapporteur on the Rights of Persons with Disabilities issued a report to the Human Rights Council that focused on how ableism influences medical and scientific practice and bioethical responses to disability. The conclusion is stark:
The hegemony of ableism in society has perpetuated the idea that living with a disability is a life not worth living. There is a deep-rooted belief, carved with fear, stigma and ignorance, that persons with disabilities cannot enjoy a fulfilling life, that their lives are incomplete and unfortunate, and that they cannot attain a good quality of life. While the eugenic programmes of the late nineteenth and early twentieth centuries have disappeared, eugenic aspirations persist in current debates related to medical and scientific practice concerning disability, such as prevention, normalizing therapies and assisted dying.16
These biases are particularly dangerous when they influence health care decisions. The reality is that many medical professionals do not see the same value in the lives of disabled persons as they do for themselves. In a 2021 survey of American physicians:
82.4% reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7% of physicians were very confident about their ability to provide equal quality care to patients with disability, just 56.5% strongly agreed they welcome disabled patients into their practices, and 18.1% strongly agreed that the health care system often treats these patients unfairly Potentially biased views among physicians could perhaps contribute to persistent health care disparities affecting people with disability.17
The National Council on Disabilities, in a 2019 report, summarized the significance of this ableism: “Healthcare providers’ medical futility decisions are impacted by subjective quality-of-life judgments, without requiring education or training in disability competency and, specifically, in the actual life experiences of people with a wide range of disabilities. Many healthcare providers critically undervalue life with a disability.”18
This attitude directly impacts the quality of care. A 2022 study found that persons with disabilities “often receive substandard care, and in some cases are refused care.” The study concluded that “physicians’ biases and discriminatory attitudes appear to play a significant role” in these disparities.19
This is not an isolated attitude. In one study about assessments of quality of life for children with disabilities, 59 percent of neonatologists and 68 percent of nurses rated some conditions as being worse than death.20
Even infants without disabilities are routinely disvalued as compared to other children and adults. Numerous studies have shown that “the relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives.”21
Disability activists are seeing something frighteningly familiar behind these attitudes—what some are calling “the new eugenics.”22
“Eugenics,” as generally understood, means the judgment that a human life is not worth living or is inherently inferior because of some undesirable characteristic or condition. This attitude was rarely put more bluntly than by Margaret Sanger:
No more children should be born when the parents, though healthy themselves, find that their children are physically or mentally defective. No matter how much they desire children, no man and woman have a right to bring into the world those who are to suffer from mental or physical affliction. It condemns the child to a life of misery and places upon the community the burden of caring for it, probably for its defective descendants for many generations.23
In her day, this inhumane attitude was socially acceptable and even fashionable. But it was utterly discredited by the Nazi program to kill people with disabilities—“lives unworthy of life.”24
All good people say “Never Again” when it comes to anything associated with the Nazi genocide and would never consider their actions to be motivated by a eugenic attitude. But regardless of intention, there is a clear similarity between prevalent attitudes towards persons with disabilities and decisions about the value of their lives.
For decades, we have seen the result of this attitude towards unborn children with adverse health conditions identified by prenatal diagnosis. The horrific world-wide practice of eugenic abortion openly targets unfavored races, sexes, and physical conditions.25 We often read the “success stories” of the “elimination of Down Syndrome” and other disabilities—an “achievement” always accomplished by killing unborn children who have those conditions.26 But eugenics isn’t limited to pre-birth terminations. The law permits it to take place after birth as well.
Death in the NICU
Decisions are agonizingly difficult to make in the pressure of a neonatal intensive care unit. But death by withdrawal of life-sustaining treatment happens all the time. Numerous studies show that the great majority of deaths in NICUs come after withholding or withdrawing life-sustaining treatment.27 In many of those cases, the infant undoubtedly died of the underlying condition. But there are certainly neonates who are dying by starvation and dehydration.
Studies show that common justifications for withdrawal include low predicted quality of life and suffering.28 This suggests that what is really happening is not a just benefit/burden analysis for specific treatment options, but mercy killing.
It is difficult if not impossible to determine how many are dying this way. Studies typically describe withdrawal of life-sustaining treatment as the “mode” of death, while the underlying condition is considered the “cause.”29 This bears an eerie similarity to assisted suicide statutes, which deceptively insist that death certificates cite the underlying ailment and not suicide as the cause.
It also obfuscates an essential element that has great weight in determining whether there is legal liability for harm to another—causation. We use several different concepts for this, such as whether one’s conduct was the proximate, substantial, or “but for” cause of an injury. Causing death by deliberate dehydration would clearly fall into any one of those categories. But if it is only a “mode” and not a “cause,” then any theory of legal fault is defined away.
These complex legal and medical decisions usually occur far from the view of the public. But not always. This leads us to the Baby Doe Rules.
The Baby Doe Rules
Back in the early 1980s, there were two prominent cases involving newborns with serious disabilities, where hospitals and doctors failed to provide them with life-sustaining treatment. These prompted a great uproar in the public, who saw this as euthanasia. After a complicated regulatory and litigation history, Congress enacted the “Baby Doe Rules” in amendments to the Child Abuse Protection and Treatment Act in 1984.30
The Baby Doe Rules reflect the traditional medical ethic of the sanctity of every human life and insist that newborns with disabilities have equal protection of the law. The Rules thus have a presumption in favor of preserving life, but not at all costs, if the infant does not benefit from treatment.
Life-sustaining treatment can be withheld if the infant’s condition falls within certain exceptions:
• The infant is chronically and irreversibly comatose.
• Treatment would merely prolong dying; it would not be effective in ameliorating or correcting the life-threatening conditions, or it would be futile in terms of the survival of the infant.
• Treatment would be virtually futile in terms of the survival of the infant, and the treatment itself under such circumstances would be inhumane.31
The Rules are specific that these exceptions would not permit withholding nutrition and hydration. That must be provided in all cases.
To protect the rights of the disabled infant, the states are required to have an oversight and enforcement mechanism. If a decision regarding life-sustaining treatment violates the Rules, the hospital ethics review board is required to report the case to the state child protection agency as “medical neglect.”32 The state agency can then investigate and take action according to their existing laws.
The Rules are not perfect by any means. But they make the crucial distinction between nutrition and hydration as against other treatments. They also provide helpful criteria for decision-making that are focused on the patient’s condition, and not on perceived future quality of life. And they give the infant some kind of due process before he is deprived of life.
In addition to the Rules, the Department of Health and Human Services issued interpretive guidance that discussed the various terms and definitions.33 While the doctor was expected to apply his “reasonable medical judgment,” the focus is whether a specific treatment would address the infant’s condition and preserve her life. The department strongly emphasized that the term “withholding medically indicated treatment . . . does not sanction decisions based on subjective opinions about the future ‘quality of life’ of a retarded [sic] or disabled person.”34
The guidance also affirmed that “it should be clearly recognized that the statute is completely unequivocal in requiring that all infants receive ‘appropriate nutrition, hydration, and medication,’ regardless of their condition or prognosis.”35 Regarding the potentially ambiguous term “inhumane,” the guidance further stated that “consideration of the infant’s future ‘quality of life’ . . . would be inconsistent with the statute.”36
This guidance was not binding and was eventually withdrawn after the Baby Doe Rules were included in statutory law. The Department then issued a new guidance that was much less detailed than the original version.
This new guidance also rejected the idea that treatment or nourishment could be withheld “solely on the basis of present or anticipated physical or mental impairments of an infant,” if it would otherwise “medically benefit” the infant.37 And it maintained the focus on the effect of a treatment on the condition of the infant, and whether the contemplated treatments will provide a “medical benefit.”
The Baby Doe Rules and both of the agency’s sets of guidance are unambiguous in their focus on the preservation of life and on treating immediate conditions. They both embody the ethos of sanctity of life and reject a focus on future quality of life.
One would think that this would ensure that disabled infants would be protected from incidents like the original Baby Doe cases. That would be wrong.
The Failure of the Baby Doe Rules
In 2009, Georgia State University School of Law hosted a symposium to mark the twenty-fifth anniversary of the Baby Doe Rules. Presentations were made by doctors, lawyers, and bioethicists. In the introduction to the publication of the symposium, the editor commented:
. . . the Rules have seemingly become dormant for many clinical practitioners who are actually caring for newborns in neonatal intensive care units across the country . . . [T]he Rules themselves apparently are not necessarily the primary tools that guide medical and parental decision-making about treatment in actual clinical practice today. Indeed, according to one of the speakers at the symposium, many of the younger, more recently trained neonatal physicians may not even have heard of the Baby Doe Rules (emphasis added).38
How can this be the case? How is it that a significant federal law, which must be implemented by agencies at the state level, has not had a major—or even any—impact on the actual care of disabled neonates?
We first must acknowledge the inherent flaws in the Baby Doe Rules themselves. The rules are only binding if the state accepts federal funding. Their proposal that hospitals establish special ethics committees for dealing with these cases is just a recommendation. Only the state child protection agency has standing to bring an action to prevent the abuse or neglect of a disabled infant. There is no private right of action against a health care provider or a hospital, and there is little financial risk for states if they fail to enforce the rules. The federal government has no general jurisdiction over medical decision-making, which has always been governed by state laws. And when questions arise, courts generally defer to parents as surrogates for their children, with some narrow exceptions.39 These flaws seriously hinder the effectiveness of the Rules.
But the problem goes much deeper than the flaws in the Rules themselves. Fast-forward to 2017, when the Baby Doe Rules were thirty-three years old. The American Academy of Pediatrics issued a formal policy statement, “Guidance on Forgoing Life-Sustaining Medical Treatment.”40
The Rules are mentioned only once in this document—remarkable for a federal law that has direct relevance to the topic. There is only a brief summary that contains several important legal errors. It cites the wrong originating statute, referring instead to a bill that has nothing to do with the Rules.41 And it incorrectly states that the Rules fail to “provide direction on what actions state governments and agencies should then take when a possible violation is reported.”42 Through such errors, the Academy made its indifference towards the Baby Doe Rules clear.
Going even further, the Academy circumvented the Rules with a definitional sleight of hand by construing the term “reasonable medical judgment” in the Rules to be the equivalent of a “best interests of the child” standard.
This allows a doctor to withhold or withdraw any kind of treatment—even nutrition and hydration—that in his reasonable medical judgment is not in what he considers the best interests of the child. This essentially erases the limitations in the Rules, particularly the special protection of nutrition and hydration. Even critics of the Rules see that this is flatly incompatible with the language of the law.43
This shift towards the “best interests of the child” standard might not matter if bioethics still held to the sanctity of life principle. But under a quality-of-life ethos, it lays the foundation for the ultimate failure of the Rules and a legal opening for infant euthanasia.
The Corruption of the “Best Interests” Standard
The “best interests of the child” standard has long been the gold standard in resolving legal issues affecting children, such as adoption and post-separation custody.44
This is not a uniquely American principle. The United Nations Convention on the Rights of the Child states that, “In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”45
Most parents and doctors would certainly try to make treatment decisions in a way that focuses on what is best for the infant. But the “best interests” standard in contemporary practice is deeply problematic. It gives a decisionmaker almost unlimited discretion, with no fixed standards to apply and little or no real oversight.46 Laws regarding surrogate decision-making reinforce the unaccountable authority of surrogate decision-makers by immunizing them from any legal liability as long as they act in “good faith.”47
The greatest danger is that for many medical professionals and bioethicists the “best interests of the child” has expanded to encompass the potential future “quality of life” of the infant and burdens on caregivers and society.48 This is a direct consequence of the rejection of the sanctity of life ethic, which focuses on the immediate medical needs of the infant and the effectiveness of treatments in addressing them.
If one is supposed to be acting in the “best interests of a child,” it is very strange to take into account the interests of anyone else. In the context of child custody and support, where the “best interests” standard is most often used, the law is clear that only the child’s well-being is relevant.49 The interests of parents are not even mentioned as a factor.50 Indeed, it would be a grave abuse of power if a family court judge were to decide a child custody matter based on the best interest of one of the parents.
But in a recent study of neonatologists and ethicists, over half the neonatologists surveyed rejected the idea that the interests of family members could limit their obligation to treat the infant, and endorsed a best interests standard that exclusively considers the infant’s condition. If the Baby Doe Rules had been taken seriously, there should have been unanimity on those points.51
On their side, bioethicists agreed most strongly that a determination of an infant’s best interests had to include the effects on their family. It is truly alarming that ethicists are so willing to take the best interests standard and turn it into something completely different. How can it possibly be in the best interests of an infant for their well-being to be subordinated to the interests of others? How is that not a textbook example of exploitation?
This explicit rejection of the Baby Doe Rules opens the door to “quality of life” considerations, which typically involve subjective and speculative predictions of the burdens of long-term care on the caregivers. While those concerns are very real, they should be addressed by ample assistance to the caregivers, not the elimination of the patient.
The danger to a disabled infant could not be clearer. Largely due to the ubiquity of ableist biases, medical professionals often underestimate both a disabled person’s quality of life and the extent to which that person will value it.52 So any assessment of potential “quality of life” will inevitably be slanted against the preservation of life as a per se good, which inevitably leads to acceptance of euthanasia.
This is also reflected in the growing interest by the government and insurance industry in the use of “Quality Adjusted Life Years” to inform their decisions about which drugs and treatments will be provided or paid for.53 This concept relies on superficially objective but really subjective assessments of people’s health that use an algorithm to compare the effects of treatments against the patients’ presumed quality and length of life. It has been sharply criticized as being inherently faulty and dangerous to people with disabilities.54
The “best interests” standard has been further corrupted by a troubling evolution of the concept of medical “futility.” The original agency guidance for the Baby Doe Rules offered a limited interpretation of that term: “The term ‘virtually futile’ [means] that the treatment is highly unlikely to prevent death in the near future.”55 The current guidance, which lacks a definition of “futile treatment,” still focuses on the immediate effect of the treatment on the patient’s physical condition. While this always involves some subjective judgment, the sole concern is still on preserving the patient’s life.
But the term “futile” now has evolved to include a subjective assessment of the patient’s possible future “quality of life.” Both the American Academy of Pediatrics and the American Medical Association specifically include “future” or “desired” quality of life among the factors when considering discontinuing “futile” or “not medically appropriate” care (the AMA’s favored euphemism).56 A determination of “futility” would permit the withdrawal of nutrition and hydration, which are not distinguished from other medical treatments.57
Every state has a law dealing with medical futility, in most cases permitting the denial of care deemed medically futile even over the objection of the patient’s surrogate.58 These laws are also interpreted to encompass “quality of life” considerations.
The tragic irony is that under “futile care theory,” treatments are rejected not because they don’t work, but precisely because they do—they successfully preserve the patient’s life, but that life is considered “not worth living.” This corruption of the “best interests” standard thus leaves infants with disabilities in grave danger—not just from their medical condition, but from the misguided thinking of the people who are supposed to be caring for them.
A Thought Experiment
Consider a hypothetical case of a seriously disabled newborn. His conditions would likely be fatal if not treated, and he would have an uncertain prognosis even with treatment.
The doctor makes an assessment of what he considers the best interests of the child. He looks at factors such as the likelihood that the treatment will bring a benefit by alleviating the symptoms and prolonging life, as well as the burdens on the child. But he also forms an opinion about the possible burdens on the family and society, as well as the potential quality of life of the child if he survives. He concludes that further treatments would not lead to a cure and would leave the child with a poor life that would impose serious burdens on the parents and on medical resources. He thus recommends to the parents that they withhold any further treatment, including food and hydration.
If the Baby Doe Rules were operative, this situation should trigger a report of potential medical neglect by the ethics committee. Recall that under the Rules, there is a presumption that life-sustaining treatment will be provided (including food and water) unless one of the statutory exceptions applies:
(1) the infant is chronically and irreversibly comatose; (2) the provision of such treatment would merely prolong dying, not be effective in ameliorating or correcting all of the infant’s life-threatening conditions, or otherwise be futile in terms of the survival of the infant; or (3) the provision of such treatment would be virtually futile in terms of the survival of the infant, and the treatment itself under such circumstances would be inhumane.59
In our hypothetical, the failure to provide food and hydration would certainly be a major problem. The exceptions in the Baby Doe Rules do not permit that to be withheld under any circumstances. The consideration of speculative future “quality of life” also violates the terms of the law itself as well as the agency’s original and current interpretive guidance. A major question would be whether treatments would have been “futile in terms of the survival of the infant” within the meaning of the Rules, and not under “medical futility theory.” It would certainly make for a challenging case.
But in reality, the Baby Doe Rules are not actually operative, and the doctor and the parents would almost certainly be immune from any negative legal consequences. Indeed, it is doubtful that an investigation would even take place. Consider how it might play out under New York law.60
For the doctors, one legal standard would be essentially the same as in a medical malpractice case—you must prove that the doctor breached the applicable standard of care.61 Another legal standard is whether the doctor has committed “professional misconduct,” which requires proof of negligence or incompetence.62 There is no evidence of that, and the doctor followed the advice of the American Academy of Pediatrics, which is approved by many bioethicists. His course of conduct was also approved by the hospital ethics committee. He would certainly face no legal repercussions.
For the parents the case is even easier. As surrogate decision-makers, parents are legally permitted to exercise the patient’s unrestricted autonomy to accept or decline medical treatments, as long as they do so in “good faith.”63 The elasticity of the “best interests” standard certainly shields them there. When there is an allegation of parental neglect, the legal inquiry is whether they sought accredited medical assistance, were aware of the seriousness of the child’s condition, and chose a treatment recommended by their physician that is within the realm of responsible medical authority.64 Clearly that is the case here, so the parents would also be held blameless.
Note that things might be different if the parents resisted the doctor’s judgment and insisted on treatment. Parents of infants with disabilities have had some successes in litigation to defend their rights under various state laws that permit transfer to another facility, and federal laws that ban discrimination on the basis of disability.65 But when they all agree, none of those laws do anything for the infant.
The Overton Window has already stealthily shifted so far that nobody even calls this euthanasia. It may be a tragedy, but it’s in the regular course of medical care that is smiled upon by both the law and bioethics. It is only a short and easy slide from this to the position advocated by the Canadian doctor—active euthanasia for disabled infants in order “to not allow the child to suffer.”
The weaknesses of the Baby Doe Rules and their failure to provide protection to infants with disabilities have long been known. But nothing has been done to reform them or to make them effective.
In September 2020, President Trump issued an executive order directing the Secretary of the Department of Health and Human Services to take action to protect vulnerable newborn and infant children.66 In the last week before the end of the administration, HHS published proposed regulations to address numerous reported instances of discrimination against infants with disabilities.67 The new regulations would have prohibited the denial of care to disabled infants whose parents consent to treatments.68 They also prohibited “undue influence or steering of individuals toward the withdrawal of life-sustaining care, or toward the provision of life-ending services, on the basis of disability.”69 And they specified that anti-discrimination laws applied to any decision to deny care based on “quality of life or burden evaluations, or stereotypes or bias, based on disability.”70
If they had gone into effect, these new rules would have gone a long way to correcting some of the flaws in the Baby Doe Rules and might also have had a direct impact on the actual medical decisions that are being made. That would depend on whether bioethicists and health professionals gave them any more respect than they have thus far given the Baby Doe Rules themselves.
Unfortunately, the Biden Administration put this proposed rule on hold pending review. That usually means that the proposal is dead. Indeed, it has now disappeared from the Federal Register and from the HHS website. Even the press release announcing the proposed regulations can no longer be found on the HHS website.71
A Different Model
So what’s the answer?
The goal is genuine reform that gives robust legal protection to infants with grave disabilities. To do that, we need to change our way of looking at them and their situation.
In the current approach, the child is in a vulnerable situation where all of the caregivers have inherent conflicts of interest. Parents are naturally concerned about the burden of providing care for many years ahead, as well as the impact on their finances, their relationship, and their other family members. Health care providers are concerned about scarce resources and finances, which will be seriously strained by intensive long-term care. Ethics committees are instruments of the hospital that typically lack any representation by persons with disabilities and provide no due process in their deliberations. To counter this, we have to start viewing a gravely disabled child as a vulnerable person who has a right to be affirmatively protected by society. The direct analogy is to children at risk of abuse or neglect. They have the benefit of mandatory reporting laws and recourse to a neutral and independent body whose duty is to advocate for and protect them. This is what the Baby Doe Rules unsuccessfully tried to accomplish.
All this would entail is applying the same rules to newborns with disabilities that we apply to older children. If parents failed to provide a nine-year-old with food and water, we would certainly expect the government to investigate them for culpable neglect and step in if necessary to preserve the child’s life.
The idea of absolute patient autonomy, exercised by surrogates on behalf of disabled infants, must be limited by tight controls that set clear conditions on the removal of life-sustaining treatments. Nutrition and hydration must be legally distinct from other forms of treatment, with strong protections against their removal in all but the most exceptional cases. Attention has to be focused on their immediate medical condition, and not on subjective and pejorative judgments about “quality of life.” There also must be some form of due process or independent review as part of the decision to withdraw lifesustaining treatment. And all of this takes place in a society with deep ableist biases and a rejection of any disability and of suffering. Even the person with impeccable good faith and altruism can’t help but be negatively influenced. Addressing this issue always gets embroiled in abortion politics, because any solution would have to deal with the question of care for infants born alive accidentally during an abortion. Pediatric palliative care also has to be preserved, and medical decision-making and advances in treatment can’t be discouraged by legal uncertainty. But these are not insuperable challenges. There will also have to be serious engagement with bioethicists and medical professionals. There are many who do not share our full spectrum of beliefs, but who are nevertheless uncomfortable with the contemporary “throw away” culture.72 The lessons of the other nations that have already legalized euthanasia for adults have led many secular-minded people to have deep misgivings about where things are leading.
It will also involve protecting and enhancing “safe harbor” institutions that operate according to the sanctity of life ethic. There are many such institutions out there already, and they need support.
Ultimately, we must recognize that we are in this situation because of the radical secularization of medicine and bioethics, which are completely divorced from traditional moral norms. The only real solution is to renew the sanctity of life ethos, reject ableism, and recapture the ideal of the fundamental equality of all people—particularly vulnerable infants who are facing challenges from serious disabilities.
We must push the Overton Window away from infant euthanasia lest it become more and more plausible and acceptable.
1. For an excellent explanation of this important concept, see A Brief Explanation of The Overton Window, The Mackinac Center for Law and Public Policy, https://www.mackinac. org/OvertonWindow.
2. See, e.g., Joe Carter, The Dangerous Mind of Peter Singer, First Things (June 22, 2011), https:// www.firstthings.com/web-exclusives/2011/06/the-dangerous-mind-of-peter-singer.
3. Testimony of Dr. Louis Roy on behalf of the Quebec College of Physicians before the House of Commons Special Joint Committee on Medical Assistance in Dying, Oct. 7, 2022, https://parl.ca/ DocumentViewer/en/44-1/AMAD/meeting-19/evidence.
4. This burst into the headlines in the case of abortionist Kermit Gosnell, and the general reaction was disgust and horror. See, e.g., Anne Conlon, Film/Booknotes: Gosnell: The Trial of America’s Biggest Serial Killer, Directed by Nick Searcy, Human Life Review, Fall 2018, p. 66.
5. The intent to cause death by withdrawing treatment is the crucial component of passive euthanasia. See, e.g., Brassington, I. What passive euthanasia is, 21 BMC Med Ethics 41 (2020).
6. See, e.g., Udo Schuklenk, Physicians can justiﬁably euthanize certain severely impaired neonates, 149 J. Thorac. Cariocasc. Surg. 535 (2015).
7. United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services (6th Edition) (2018), par. 57.
8. This was extensively analyzed in the Supreme Court decision rejecting a constitutional right to assisted suicide, and, by implication, euthanasia. Quill v. Vacco, 521 U.S. 793, 800-805 (1997).
9. United States Conference of Catholic Bishops, supra, at par. 58. See also Pope John Paul II, Address to the Participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientiﬁc Advances and Ethical Dilemmas” Mar. 20, 2004, https://www.vatican.va/content/ john-paul-ii/en/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc.html (“the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory”).
11. 3d 1127 (1986).
12. See, e.g., NY Pub. Health Law Articles 29-C (Health Care Agents and Proxies) and 29-CC (Family Health Care Decisions Act).
13. Charles C. Camosy, Losing our Dignity: How Secularized Medicine is Undermining Fundamental Human Equality (New City Press, 2022).
14. See, e.g., Kathryn L. Weise, et al., Guidance on Forgoing Life-Sustaining Medical Treatment, 140 Pediatrics 3 at 5 (Sept. 2017).
15. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions (Volume 10) 90 (1983).
16. Special Rapporteur on the Rights of Persons with Disabilities, Rights of persons with disabilities, 73, Dec. 17, 2019, https://www.ohchr.org/sites/default/files/A_HRC_43_41Easyreadversion.pdf.
17. Lisa I. Iezzoni, et al., Physicians’ Perceptions of People With Disability and Their Health Care, 40 Health Affairs 297 (Feb. 2021).
18. National Council on Disability, Medical Futility and Disability Bias (Nov. 20, 2019), https://ncd. gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf.
19. Tara Lagu, et al., ‘I Am Not the Doctor for You’: Physicians’ Attitudes About Caring for People With Disabilities, 41 Health Affairs 1387 (2022).
20. Saroj Saigal, et al., Differences in Preferences for Neonatal Outcomes Among Health Care Professionals, Parents, and Adolescents, 281 JAMA 1991 (June 2, 1999).
21. Annie Janvier, Karen Lynn Bauer, and John D. Lantos, Are Newborns Morally Different From Older Children?, 28 Theoretical Medicine and Bioethics 413, 417 (2007).
22. Johannes Reinders et al., The Quiet Progress of the New Eugenics. Ending the Lives of Persons With Intellectual and Developmental Disabilities for Reasons of Presumed Poor Quality of Life, 16 Journal of Policy and Practice in Intellectual Disabilities 99 (June 2019).
24. The United States Holocaust Museum, The Murder of People with Disabilities, https://encyclopedia. ushmm.org/content/en/article/the-murder-of-people-with-disabilities.
25. See, e.g., Mary O’Callaghan, Teaching Human Dignity: Prenatal Diagnosis & Disability Selective Abortion, McGrath Inst. for Church Life (2019), https://perma.cc/XS8Y-JYA3; see also Justice Clarence Thomas’ extensive discussion of eugenic abortion in the case of an Indiana law that prohibited abortion based on a child’s race, sex, or disability. Box v. Planned Parenthood, 139 S. Ct. 1780, 1782-91 (2019) (Thomas, concurring).
26. Studies vary as to the number of babies with Down Syndrome are aborted. One estimate is that 67% of babies with a pre-natal diagnosis of Down Syndrome were aborted in the United States. Natoli JL, et al., Prenatal diagnosis of Down syndrome: a systematic review of termination rates (19952011), 32 Prenat Diagn. 142 (Feb. 2012). The numbers are even higher in Europe—as high as 100% in Iceland. Julian Quinones and Arijeta Lajka, “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing (Aug. 15, 2017), https://www.cbsnews.com/news/down-syndrome-iceland/.
27. See, e.g., See, e.g., Marissa C. Michel, et al., Causes and circumstances of death in a neonatal unit over 20 years, 83 Pediatric Research 829 (2017) and Matthew Lin et al., Infant mode of death in the neonatal intensive care unit: A systematic scoping review, 42 Journal of Perinatology 551 (2022).
29. Lin, supra.
30. P.L. 98-457 (1984). For a good overview of the complicated backstory and history of the Baby Doe Rules, see Jack Resnick, The Baby Doe Rules (1984), The Embryo Encyclopedia (2011), https:// embryo.asu.edu/pages/baby-doe-rules-1984
31. 42 U.S.C. § 5106g(a)(5).
32. 42 U.S.C. § 5106a(b)(2)(C).
33. 45 C.F.R. Pt. 1340, App. These guidelines were later removed on technical grounds that they were obsolete due to the passage of the amendments to CAPTA. 80 FR 16577-03 (2015).
37. 45 C.F.R. Pt. 84, App. C.
38. Charity Scott, Baby Doe at Twenty-Five: Foreword to the Symposium, 25 Ga. St. U. L. Rev. 801 (2009).
39. Jeannine Wyszkowski, The Legal Rights of Disabled Infants to Receive Life-Sustaining Medical Treatment, 4 Conn. Pub. Int. L.J. 181 (2004). A case recently decided by the Supreme Court, Health & Hospital Corporation of Marion County v. Talevski, 143 S.Ct. 1444 (2023), may open the door to private rights of action to enforce or seek damages under the Baby Doe Rules.
40. Weise, supra.
41. Contrary to the Policy Statement, the Human Services Amendments of 1994, P.L. 103-252 (May 18, 1994) had nothing to say about the Baby Doe Rules, much less enact them.
42. Weise, supra, at 6. In fact, the statute specifically requires that the states have procedures to respond to reports of medical neglect and the authority to pursue legal remedies. 42 U.S.C. § 5106a(b) (2)(C)
43. Loretta M. Kopelman, The Best Interests Standard for Incompetent or Incapacitated Persons of All Ages, 35 J.L. Med. & Ethics 187, 191 (2007).
44. See, e.g., N.Y. Dom. Rel. Law § 240.
45. The United Nations Convention on the Rights of the Child, Article 3 (1989). Article 23 of the Convention states “States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.” The United States is the only nation in the world that has not ratified the Convention.
46. Nicole Lapsatis, In the Best Interests of No One: How New York’s “Best Interest of the Child” Law Violates Parents’ Fundamental Right to the Care, Custody, and Control of Their Children, 86 St. John’s Law Review673 (2012).
47. See, e.g., N.Y. Pub. Health Law § 2994-e and § 2994-o(1).
48. See, e.g., Scott, supra.
49. N.Y. Domestic Rel. Law § 240.
51. Frank X. Placencia, et al., Three Decades after Baby Doe: How Neonatologists and Bioethicists Conceptualize the Best Interests Standard, 36 J. Perinatol. 906 (2016).
53. National Council on Disabilities, Quality-Adjusted Life Years and the Devaluation of Life with Disability (2019), https://ncd.gov/sites/default/files/NCD_Quality_Adjusted_Life_Report_508.pdf.
55. 45 C.F.R. Pt. 1340, App. (1985).
56. Weise, supra; American Medical Association, Code of Medical Ethics Opinion 5.5: Medically Ineffective Interventions, https://code-medical-ethics.ama-assn.org/ethics-opinions/medicallyineffective-interventions.
57. Weise, supra, at 5; American Medical Association, Code of Medical Ethics Opinion 5.3: Withholding or Withdrawing Life Sustaining Treatment, https://code-medical-ethics.ama-assn.org/
58. National Council on Disabilities, supra note 17, at 47-52.
59. 42 U.S.C. § 5106g(a)(5).
60. New York law is cited not as a model, but as an example of a legal framework with detailed standards for surrogate decision-making. N.Y. Pub. Health Law § 2994-d. Other laws have virtually no procedural or substantive guidelines for these decisions. See, e.g., Uniform Law Commission, Health Care Decisions Act (adopted 1993).
61. Pieter v. Polin, 148 A.D.3d 1193, 1194 (2nd Dept. 2017).
62. N.Y. Education Law § 6530.
63. N.Y. Pub. Health Law § 2994-e and § 2994-o(1).
64. Matter of Hofbauer, 47 N.Y.2d 648, 656 (1979).
65. See, e.g., In re Baby K., 16 F.3d 590 (3d Cir. 1994).
66. Executive Order 13952, Protecting Vulnerable Newborn and Infant Children, 85 FR 62187 (Sept. 25, 2020).
67. Department of Health and Human Services, Notice of Proposed Rule-Making, Special Responsibilities of Medicare Hospitals in Emergency Cases and Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities, Docket No. HHSOCR-2021-0002, at 8, note 7 (Jan. 14, 2021), https://www.hhs.gov/sites/default/files/infants-nprm. pdf.
68. Id. at 14-15.
69. Id. at 26.
70. Id. at 31.
71. The original press release was at https://www.hhs.gov/about/news/2021/01/15/ocr-publishesproposed-rule-protecting-infants-born-live-discrimination-basis-disability.html (attempted access January 23, 2023). It is preserved at https://www.einnews.com/pr_news/534591471/ocr-publishesproposed-rule-protecting-infants-born-alive-from-discrimination-on-the-basis-of-disability (accessed Jan. 23, 2023).
72. Pope Francis, Evangelii Gaudium (2015), par. 53.
Edward Mechmann is an attorney and Director of Public Policy for the Archdiocese of New York.