By Jacqueline Harvey, Ph.D.
A news article entitled “Now sick babies go on death pathway: Doctor’s haunting testimony reveals how children are put on end-of-life plan” from the UK’s Daily Mail is commanding considerable attention to end-of-life care in Great Britain. The article cites commentary from the British Medical Journal (BMJ) by an anonymous physician, who admits that he/she oversees the intentional starvation and dehydration of infants with disabilities, a practice previously thought to apply only to the elderly and terminally-ill under the controversial Liverpool Care Pathway (LCP) protocol for palliative care in the U.K.
For Americans, this account of starving and dehydrating infants with disabilities echoes back to the infamous Baby Doe cases in the early 1980s. The most famous Baby Doe was born on April 9, 1982 in Bloomington, Indiana. The child had with trisomy 21 (otherwise known as Down syndrome) and a tracheoesophageal fistula and esophageal atresia, a common congenital abnormality where the esophagus does not connect to the stomach. While this would have been easily correctable with surgery and would have allowed the child to eat normally, the baby’s parents refused treatment because they did not want an intellectually-disabled child. In spite of numerous offers from others to adopt him, the courts agreed to deny the baby both life-saving surgery and IV food and fluids. The baby died six days later and the physician that supported the parents stated matter-of-factly, “I believe there are things that are worse than having [such] a child die. And one of them is that it might live.”
The U.S. responded to such cases by amending the Child Abuse Prevention and Treatment Act in 1984, to deny federal funds to hospitals that failed to enforce a new set of rules to protect disabled infants. Nonetheless, disabled children are still denied life-saving treatment, including food and water under the guise of “medical futility.” While medical care would save or sustain the life of a disabled child, proponents of denying care argue that life-saving treatment is futile not because it will not work and prevent death, but because it will work- and death is preferable to life with a disability. Medical futility statutes, such as the Texas Advance Directives Act of 1999 are routinely employed to deny care to disabled and chronically-ill infants and are argued to be compatible with Baby Doe regulations.
Even 30 years after Baby Doe, this “better dead than disabled” ideology is pervasive not simply in the U.S. but accordingly to the BMJ article, in the U.K. as well. The anonymous doctor states, “The parents want “nothing done” because they feel that these anomalies are not consistent with a basic human experience.” “The basic human experience” is undefined, but left only to mean that the parents deem a life with this disability to be a life that is not worth living. The doctor continues, “In a soft voice the father begins to tell me about their life, their other children, and their dashed hopes for this child. He speculates that the list of proposed surgeries and treatments are unfair and will leave his baby facing a future too full of uncertainty.” Read as: if we cannot be certain the child will function as we hoped, we don’t want our lives or our other children to be burdened with a child who may have special needs. Regardless of the intentions of parents, whether it is bigotry against persons with disabilities that manifests into a genuine misperception that a child is better off dead- or simply selfishness in demanding nothing less than a “perfect” child- the anonymous doctor tells us that children who are denied food and water take an average of 10 days to die.
While the LCP allows the removal of artificial nutrition and hydration, the guidelines indicate that such removal is indicated only when food and fluids present a burden to the patient, noting that patients who are dying experience a diminished need for food and drink. However, in the case of children taking 10 days to expire, this does not indicate babies who were dying and feeding was denied because it was not needed or otherwise burdensome: This is clearly children being killed from dehydration, just like any patient would who was denied fluids. Simply put: this is euthanasia, although there is nothing humane about a slow death from dehydration. While active euthanasia would be considerably less painful, that remains illegal- and passive euthanasia by dehydration has become the socially acceptable way to kill persons with chronic illnesses or disabilities after birth. The account that the doctor gives the journal is one of intentional medical neglect of unwanted babies, no different than recent accounts of babies abandoned to die following botched abortions in Canada, or babies left to die here in America prior to the Born Alive Infants’ Protection Act. While the LCP is protocol for the dying, patients who take 10 days to die from intentional denial of basic human needs are not dying, they are being killed.
While denial of food and fluids in this scenario is clearly passive euthanasia, there is evidence of active euthanasia with older patients in the UK, suggesting that the 29-hour median for death after the patient is put on the pathway suggests that health care workers are hastening death via deep sedation and the removal of hydration. Other evidence includes quotas for hospitals to place patients on LCP and financial incentives to do so, hastening death of individuals who may not otherwise be terminal simply to contain costs or for financial gain. A national audit also has indicated that half of all patients placed on LCP were not told that life-sustaining care was discontinued.
LCP protocol itself reinforces that physicians in the UK do not need permission from patients to deny care, nor do they have to comply with requests to continue care if they disagree. In 2009, UK doctors withdrew care from a child known only as “OT,” in spite of the parent’s objections. In 2005, the parents of Charlotte Wyatt, an 18-month-old with disabilities due to being born premature, fought a physician-imposed DNR order. The judge upheld the doctor’s ability to deny a ventilator to Charlotte stating it would not be in her best interests to save her life, since she was a “profoundly disabled baby.” Charlotte defied all expectations and survived, so the DNR was lifted, yet the judge still reaffirmed the right of the doctors to deny her care in the future at their discretion. A related case in 2004 ended tragically, when courts allowed physicians to deny “aggressive care” to Baby Luke Winston-Jones, who passed away at 10 months from a heart attack that physicians refused to treat. Although the babies in the BMJ article were killed at their parents request rather than against their wishes, these stories make it abundantly clear that infants with disabilities in the U.K. are in dire need of protection.
While the BMJ account of euthanasia in the UK is certainly believable, an anonymous article detailing unethical conduct does not become credible simply because a journal chooses to publish it (i.e. one cannot peer review a narrative). Secondly, the author lacks the integrity to share their identity and also admits to an act that is in violation of the official LCP protocol. Furthermore, the doctor plans to persist in what is essentially the most excruciating form of infanticide, since they merely feel bad about starving and dehydrating infants, but not bad enough to report the abuse or cease committing these atrocities. While for these and several other reasons the anonymous doctor’s testimony is not altogether trustworthy, it certainly does merit an investigation. It is also a call for bioethicists to re-examine and unequivocally condemn the removal of food and fluids, especially from the smallest patients in most need of our protection not simply in the U.K., but in the U.S., Canada and all nations marred by this inhumane practice.
Jacqueline Harvey, Ph.D.is a bioethicist and public policy scholar whose research primarily focuses on end-of-life legislation, particularly state policies that allow the forced removal of life-sustaining medical treatment against patient wishes. Her training includes a Ph.D. in Public Administration and an M.S. in Social Work. Dr. Harvey currently works in Texas as a policy analyst and independent evaluator, analyzing the effectiveness of government social welfare grants and human service programs for non-profit organizations.