Assisted Suicide and Euthanasia in Pediatrics

American College of Pediatricians - May 2021

ABSTRACT 
Over the last several decades, many countries have legalized euthanasia and physician assisted suicide for adult patients. The Netherlands was the first to legalize euthanasia for emancipated minors in 2002. More recently, the Netherlands, Belgium and several other countries have expanded their euthanasia laws to include all minors. The American College of Pediatricians decries this trend and calls upon the Medical profession in the United States to reject euthanasia and assisted suicide for minors and return to its pro-life Hippocratic roots to uphold the ancient medical ethics principle of first, do no harm. It is the role of the physician to care for all patients, including terminally ill patients, with compassion and the best available medical treatments. The intentional killing of human life is not healthcare. It violates the dignity of the human person and is always unethical.

Introduction

Euthanasia is defined as the act of bringing about the death of a hopelessly ill and suffering person in a presumably quick and painless way ostensibly for reasons of mercy and compassion. Voluntary euthanasia is euthanasia of a competent person with their informed consent. Involuntary euthanasia is euthanasia performed without the person’s consent. Physician assisted suicide is the process in which a physician helps the patient commit suicide usually by prescribing a lethal dose of medication. 

Euthanasia was practiced by physicians in ancient Greece and means “good death.” In most cases, physicians would care for patients with compassion, alleviate pain and suffering, and cure disease. However, these same physicians also had the freedom to instead bring about their patients’ deaths. Thus, the sick person did not know whether to expect to be healed or to be killed by the physician. The Oath of Hippocrates (ca. 400 BC) was the first attempt by a group of concerned physicians to establish a set of ethical principles that would guide the practice of medicine. The Hippocratic Oath explicitly rejected abortion and euthanasia and defined the physician as a healer, not an executioner. The Oath of Hippocrates states, "I will use that regimen which, according to my ability and judgment, shall be for the welfare of the sick, and I will refrain from that which shall be baneful and injurious." This concept to first do no harm has given rise to the modern medical ethics principles of beneficence and non-maleficence, the moral foundation of the doctor-patient relationship for more than 2000 years.1,2,3 Clearly, it enjoins the physician to do good and not harm because medicine is a moral endeavor, not merely one of technical skill. The American College of Pediatricians (ACPeds) affirms this long-standing ethical foundation and decries the intentional killing of patients or assisting in their suicides, which is never ethically permissible.

Pediatric Euthanasia in the Netherlands.

In the Netherlands, voluntary euthanasia and physician assisted suicide have been legal since 2002. However, the courts had failed to exercise judgment on both these practices since 1984. This unofficial permission by the courts led to increasingly widespread use of euthanasia by the medical community and eventually acceptance by the public. In the Netherlands, euthanasia is defined as the intentional termination of a patient’s life by an individual other than the patient at the patient’s request. This definition requires active termination of the life of the patient and voluntary request by the patient.4 Involuntary euthanasia is also practiced. Frequently it is the Dutch physicians who decide which patients live or die.5 Dutch supporters of euthanasia state the legal and social climate in their country is receptive to the practice of euthanasia.

The Netherlands was also the first country to legalize pediatric euthanasia with a law that allowed minors who were at least 16 years old to request to be killed. This lower limit was subsequently decreased to 12 years of age.6 The supervising doctor was to verify hopeless and unbearable suffering with no reasonable alternative. 

In the 1990s, nationwide surveys in the Netherlands showed that 62% of infant deaths within the first year after birth were preceded by a physician’s end-of-life decision and a result of euthanasia. Among infants who died in the neonatal intensive care unit (NICU), the frequency of euthanasia was 87%. The majority of deaths were a result of withdrawing or withholding treatment. Within this group, a drug was given with the intention to cause death in 15-20 cases every year.7 In contrast to this data, on average, only 3 cases per year of neonatal euthanasia had been reported to the authorities.7 

The Dutch pediatric community responded to this alarming practice with the Groningen Protocol. (GP, 2002).7 The GP for neonatal euthanasia proposed five criteria: 

  1. diagnosis and prognosis must be certain, 

  2. hopeless and unbearable suffering must be present, 

  3. diagnosis, prognosis, and unbearable suffering must be confirmed by at least one independent doctor, 

  4. both parents must give informed consent, and 

  5. the procedure must be performed in accordance with the accepted medical standard. 

In 2006, Dutch authorities officially adopted the GP criteria to regulate the practice of neonatal euthanasia. In 2016, authorities extended use of the GP criteria to infants up to one year of age.8 These Dutch proponents of infant euthanasia claim it is ethically permissible when carried out according to the GP criteria. Although diagnosis and prognosis may be readily established and independently confirmed, the second and third criteria of establishing and confirming the existence of hopeless and unbearable suffering is more difficult to accomplish. Even supporters of infant euthanasia admit that suffering is difficult to measure in adults, let alone in children and infants. The final two requirements are the most concerning and difficult as the fourth requirement calls for parents to provide informed consent.  Normally when parents give permission for medical intervention, they are expected to act in the child’s best interest, and should not be promoting active or passive euthanasia of their child.  Finally, the fifth requirement states that the termination of the child’s life must occur according to the accepted medical standard. However, killing infants is not within the scope of medical practice for pediatricians. These criteria are not based on firm moral or medical standards, leaving much room for personal, social, and economic bias. 

It is claimed that since the promulgation of the GP criteria, the incidence of direct euthanasia of newborns in the NICU has decreased to less than 2-3 cases every year.8 This is less than 15-20 deaths by lethal injection than the original surveys done in the 1990s had shown.7 There is also concern for under-reporting. Both facts suggest that many euthanasia deaths are not reported. 

After surveying a number of pediatricians at teaching centers in 2016, the Dutch Pediatric Association (NVK) considered the possibility of legalizing euthanasia for 1-12 year old children, the only remaining age group not included in the euthanasia law.9 Three years later, in 2019 the NVK approached the Dutch legal system with a proposal to include this age group of children in the euthanasia law.9 Autonomy and competency of the children in this age group was not invoked because these children are neither autonomous nor competent. Instead, the pediatrician and the parents make the decision to kill the child. According to the NVK proposal, as long as the principles of the GP were observed, the physician would not be prosecuted. This proposed law is still under discussion and it is likely that legalization of euthanasia for this age group of children will be enacted into law in the near future. When this proposed law is enacted, all Dutch children from conception to the age of 18 years will be vulnerable to be legally killed by a physician, as long as the case conforms to the GP criteria. 

Pediatric Euthanasia in Belgium 

In 2002, Belgium followed the Netherlands and legalized euthanasia for emancipated minors and citizens older than 18 years of age (Euthanasia Act 2002). According to Belgian law, a child older than 15 can be emancipated through marriage or by the court and legally considered an adult.10 In February 2014, an amendment to the 2002 Euthanasia Act made it legally permissible for minors, regardless of age, to pursue euthanasia as long as they fit specific criteria.11 The amendment states that minors who request euthanasia must exhibit “the ability to judge their current state of affairs when in a medically futile condition of constant and unbearable physical suffering that cannot be alleviated and that will, within a short period of time, result in death, and results from a serious and incurable disorder caused by illness or accident."11 

Pediatric Euthanasia in Canada

Canada is following the example of the Netherlands and Belgium. In 2016, Canada legalized euthanasia for adults euphemistically labeled Medical Assistance in Dying (MAID) rather than describing it more objectively as physician assisted suicide. The criteria for requesting euthanasia is based on the principle of autonomy and the patient’s consent, and the individual must be experiencing intolerable and enduring suffering. Patients may request physician assisted suicide even if their disease is not terminal. In 2018, the Ethics Committee of the Canadian Paediatric Society published a position statement: Medical Assistance in Dying: A Paediatric Perspective.12 The position statement deliberated the possibility of extending physician assisted suicide (MAID law) to include mature minors. Canadian law considers a mature minor to be one who shows the ability to understand the act being requested and its consequences and is assessed by the physician as able to consent. The statement from the Canadian Paediatric Society neither supports nor promotes pediatric euthanasia, but it certainly brings the issue to the forefront. In the same year, a group of pediatricians and ethicists from the Hospital for Sick Children in Toronto published an article in the Journal of Medical Ethics.13 The authors “explore the ethical challenges of providing MAID in a pediatric setting.” They claim the practice of euthanasia is “equivalent to other medical practices that result in the end of life” and that this age group should not be deprived of the opportunity to request to be killed. It is likely that Canada will soon legalize pediatric euthanasia, at least for presumably mature minors. 

Pediatric Euthanasia in the United States

In the United States, the issue of infant euthanasia surfaced in 1982. The primary case was “Baby Doe,” a newborn infant with Down Syndrome, tracheo-esophageal fistula, and esophageal atresia. The parents declined surgery as well as the provision of nutrition and fluids, and the child died from starvation and dehydration. In 1983, a second case, “Baby Jane Doe” born with spina bifida was not treated surgically but simply with antibiotics and dressings. These cases led to the Baby Doe Amendment to the Child Abuse Law, which extended the definition of child abuse/neglect to include withholding medically indicated treatment to children with disabilities. The law, known as the Baby Doe Rules, went into effect in 1985. The Rules stated decisions made based on the future quality of life of the infants were not valid and advocated mechanisms for the reporting of such practices. However, the Baby Doe Rules have rarely been enforced since they went into effect.14 Pediatric euthanasia is not yet legal in the United States. 

Should pediatric euthanasia be legalized?

A group consisting of clinicians, ethicists and philosophers from the Netherlands and the United States, debated whether pediatric euthanasia should be legalized in Ethics Rounds.15 The supporters of pediatric euthanasia proposed that age should not be a limit and that children of all ages should be allowed the opportunity to be killed based on observance of the GP constraints. The patient’s death is seen as the only alternative to relieve the pain and suffering. Those who disagree stated that modern medicine has the tools to relieve physical and emotional pain and suffering and that killing the child is not the only alternative. 

The supporters of euthanasia argue that pediatric euthanasia is practiced in many countries, often under the guise of allowing the child to die by starvation, dehydration, or lethal sedation. However, the fact that a controversial practice is widespread does not make it ethical. 

The supporters of euthanasia invoke the autonomy and the consent of the pediatric patient. However, children are neither autonomous nor competent to consent. The main reasons adults request euthanasia are fear of loss of control and becoming a burden. Young children are not worried about losing the autonomy they did not have in the first place. The older adolescent might be an exception to this principle. Children are dependent on their parents and caregivers, and they are less likely to worry about being a burden. 

Sedation and analgesia can effectively relieve the pain and suffering of the child. Occasionally the use of these medications may hasten death, usually when death is imminent. The intention is to relieve suffering and not to kill the child. Supporters of pediatric euthanasia claim there is no difference between withdrawing or withholding treatment and giving lethal medication to end life.16 However, there is a long history of making this distinction in medical practice, medical ethics, common law, and case law. The difference is clear; the disease kills the terminal patient, not the withdrawal or withholding of care. If death is imminent, starting or continuing life-sustaining treatment would only prolong the death process and result in more pain and suffering for the child and his parents. In this case, it is ethically permissible to withhold or withdraw disproportionate interventions and allow death to result as the natural consequence of the child’s illness. Withdrawing or withholding life-sustaining treatment in this clinical situation is not morally equivalent to euthanasia. 

The ideology that posits the value of the individual in terms of quality of life and contribution to society will position the pediatric patient, especially the very young child with a congenital defect, in a dangerous situation. Most children, including these, have not lived long enough to show a significant contribution to society and present a large financial liability. In many cases, their future quality of life is unknown. Moreover, this ideology can influence resource allocation in the minds of healthcare executives who wish to reduce expenses and increase profits. Worse, this ideology also poisons the reasoning of well-meaning physicians and parents who come to consider killing their patients and children as a way to eliminate suffering.

The physician is a healer who “cures sometimes, relieves often, and comforts always.” The physician must care for the patient even when a cure is not attainable and health cannot be restored because it is the physician’s ethical obligation. The medical professional ought to use his or her skills to care for the ill patient with respect, love and compassion, addressing physical and emotional pain always with the best available medical treatments. In this manner, every patient’s dignity is preserved. The ethical approach to the terminally ill child includes offering pediatric hospice services. Hospice provides assistance and resources in the home or at a hospice center to the terminally ill. These centers offer help and comfort to the patient, the parents, and other caregivers, and they are family-centered.17 

The American College of Pediatricians affirms that the role of the physician is to always care for any patient, especially the ailing patient, with love, compassion and the best available science, thereby preserving the patient’s innate human dignity. Killing is never an ethical solution to any patient’s pain and suffering.

Principal Author: Felipe E Vizcarrondo MD, MA

May 2021

References:

  1. Porter, R., editor, The Cambridge Illustrated History of Medicine, The Press Syndicate of the University of Cambridge, Cambridge, UK, 2006, pp. 58-59.

  2. Cameron, Nigel M. deS., The New Medicine, The Bioethics Press, LLC, Chicago and London, 2001, p. 56.

  3. Anthropologist Margaret Mead said the Hippocratic Oath marked one of the turning points in the history of man. “for the first time in our tradition there was a complete separation between killing and curing.” Psychiatry and Ethics (1972), Maurice Levine, M.D., George Braziller, pub., ISBN 0807606421 ISBN 9780807606421, pp. 324-325.

  4. Gordijn, B., Janssens, R., Euthanasia and Palliative Care in the Netherlands: An Analysis of the Latest Developments, Health Care Analysis, Vol. 12, No. 3, Sep 2004. 

  5. Background about Euthanasia in the Netherlands, Patients Rights Council, 2013 Available at https://www.patientsrightscouncil.org/site/holland-background/ Accessed May 1, 2021.

  6. Smith, WJ, Netherlands Push to Euthanize Children, National Review, 28 April 2016, Available at https://www.nationalreview.com/corner/netherlands-push-euthanize-children/ accessed April 23, 2021.

  7. Verhagen, E., Sauer, P., The Groningen Protocol-Euthanasia in Severely Ill Newborns, NEJM, 352;10, pp. 959-962, March 19, 2005. 

  8. Francis, N, Neonatal Deaths under Dutch Groningen Protocol very rare despite misinformation contagion, Editorial, DyingForChoice.com, Mount Albert, Victoria 3127 Australia.

  9. Holland considers allowing euthanasia for children aged from one to 12, October 2020, Available at https://theworldnews.net/uk-news/holland-considers-allowing-euthanasia-for-children-aged-from-one-to-12 Accessed May 1, 2021.

  10. Kasper, R, The Extension of Belgium’s Euthanasia Law to Include Competent Minors, Journal of Bioethical Inquiry, volume13, pages305–315(2016) 

  11. Belgium’s parliament votes through child euthanasia, 13 February 2014, Available at https://www.bbc.com/news/world-europe-26181615 Accessed May 1, 2021.

  12. Davies, Dawn., Canadian Paediatric Society, Bioethics Committee, Medical Assistance in Dying: A Paediatric Perspective, Pediatric Child Health, 2018, 23(2): pp. 125-130.

  13. DeMichelis, C., et al, Medical Assistance in Dying at a paediatric hospital, Journal of Medical Ethics, vol 45, issue 1, 21 September 2018. Available at https://jme.bmj.com/content/45/1/60 Accessed May 1, 2021..

  14. Scott, C., Baby Doe at Twenty Five, Georgia State University Law Review, Vol. 25: Issue 4, Article 11, 2008. 

  15. Brouwer, M., et al, Should Pediatric Euthanasia be Legalized? Ethics Rounds, Pediatrics, vol., 141, number 2, February 2018: e20171343 

  16. Verhagen, E., Is Neonatal Euthanasia Ever Morally Defensible?, Newsletter, Section on Bioethics, American Academy of Pediatrics, Spring 2013, pp. 8-9. 

  17. Pediatric Palliative and Hospice Care by the National Hospice and Palliative Care Organization 2021. Available at https://www.nhpco.org/pediatrics/ Accessed May 1, 2021.

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