On March 3, 2014, Belgium’s King Philippe signed into law an amendment to the country’s 2002 Belgium Act on Euthanasia. The original law limited the practice of euthanasia to competent adults. The new law would allow minors to ask for a terminal intervention if they are terminally ill, if they are in great pain and if there is no treatment to alleviate their distress. The request would have to be agreed by the patient’s medical team and parents.
The previous law had been in place for a decade. Similar laws exist in the Netherlands and in Luxembourg. They allow for adult euthanasia. Over the decade, the laws in these three countries have been relatively uncontroversial. Estimates are that about 3% of deaths in these countries follow euthanasia or assisted suicide. The extension of the law to children is based upon concern that some children experience constant and unbearable suffering despite all that modern medicine may have to offer.
The law would not allow euthanasia of an infant, since it requires that an individual child who might make such an explicit request for euthanasia do so on his/her own volition (voluntariness).
The new law has some restrictions and safeguards. It does not permit euthanasia for children who are deemed to have a neuro-cognitive impairment. It requires oversight by a multi-disciplinary team whose role is to determine whether the child has decisional capacity and, if so, whether the child’s choice of euthanasia seems to be the best option that she or he has.1, 2
This approach to end-of-life care raises a number of important concerns. The first has to do with the goals of medicine. The goals of medicine are to restore health, treat disease, and relieve pain and suffering. For millennia, it has been considered beyond (and even contrary to) the goals of medicine to ever deliberately end a patient’s life. This principle has been tested in recent decades by approaches to end-of-life care that involve the withdrawal of life-sustaining treatments. Thus, proponents of euthanasia often question whether there is a moral difference between, say, withdrawing fluid and nutrition from a child with severe neurocognitive impairment and giving that same child a terminal intervention. Such dilemmas raise the question of whether or not there are good reasons, today, to change the time honored prohibition on euthanasia.
Clearly, advances in medical technology have changed the way we think about end-of-life care. Ventilators, extracorporeal membrane oxygenation (ECMO), dialysis, left ventricular assist devices (LVADs), and other life-supporting technology make it possible today to keep people alive even when they have no hope of recovery and in states characterized by technology-induced pain and suffering. In such cases, physicians face tragic choices about whether to prolong life. In some ways, however, those are the easy cases because, for those patients, there is a life-sustaining technology that can be withdrawn. The tougher cases are the ones in which a child seems to be suffering, in which no palliative treatment seems to relieve that suffering, but in which no life-sustaining treatment is in place that can be withdrawn.3, 4
These choices are not scientific choices. They remain firmly in the domain of the healing arts, not the healing sciences. They require prudential application of science, human wisdom, and a shared intention of benefit for the patient. The healer offers knowledge, skill and wisdom. The vulnerable patient looks to the healer for guidance. The therapeutic relationship depends upon trust and a mutual attention to benefiting the patient.
How, then, does euthanasia fit into this domain of human interaction? The applications of good pain management and comprehensive palliative care have lightened the load for clinicians, patients and families grappling with these tragic circumstances, choices, and residual effects. (See accompanying article on pediatric palliative care page 387.) Most doctors and bioethicists who oppose euthanasia argue that excellent palliative care for children with life-limiting illnesses is almost always able to relieve pain and suffering.5, 6 Palliative care addresses the many facets that comprise all of us as patients (the physical, emotional, spiritual and relational) and it aids and assists families as they travel the varied paths that life-limiting or life-threatening conditions may confer upon a patient and his/her loved ones. In its best sense, palliative care improves upon the quality of life that a patient may enjoy over his/her remaining life-span – be it six days, six months or six years. And even at what some might consider its worst, when comfort seems elusive, time is short, and the disease has mastered the patient, palliative care can almost always control pain and suffering. Sometimes, it unavoidably does so in ways that hasten death. But the goal is never to hasten death, only to treat pain and suffering.7, 8
The difference in goals is crucial. An ethos that focuses on palliative care but that allows the possibility that death might be hastened is preferable to one that focuses on hastening death. Our resistance to euthanasia is rooted in a view of medicine where “healing” and “relief of suffering” are the pre-eminent goals for health care professionals and patients alike. In prioritizing these goals, the medical traditions are in harmony with many religious traditions. Life (and health), in itself, is intrinsically good, while suffering, in itself, is intrinsically bad. This does not entail that extrinsic considerations can never change our all-things-considered judgments about life, or about suffering – such as when a life is incapacitated and filled with suffering, or when suffering serves instrumentally to further some other important good. But, in their own right, life and health are good and suffering is bad, and it is these two value judgments that define the goals of medicine as promoting healing and relieving suffering.
Biography
Brian S. Carter, MD, MSMA member since 2013, is Professor of Pediatrics at University of Missouri - Kansas City School of Medicine (UMKC SOM) and is at the Children’s Mercy Bioethics Center. Blaine B. Pitt s, MD, is Assistant Professor of Pediatrics at UMKC SOM and is in the Palliative Care Service, Department of Pediatrics, Children’s Mercy Hospital (CMH). Jennifer S. Linebarger, MD, MPH, is Assistant Professor of Pediatrics at UMKC SOM and in the Palliative Care Service, Department of Pediatrics, CMH. Jeremy R. Garrett, PhD, is Assistant Professor of Pediatrics and Adjunct Assistant Professor of Philosophy at UMKC SOM. John D. Lantos, MD, is Professor of Pediatrics at UMKC SOM and at Children’s Mercy Bioethics Center.
Contact: bscarter@cmh.edu
References
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