Understanding the facts
Less than a year after the Charlie Gard case, another terminally ill British infant is gaining international attention and raising concerns about the rights of parents in Britain.
A few months after he was born in May 2016, Alfie Evans began to show signs of having a developmental disorder. Then, on December 14, 2016, Alfie was taken to an emergency room because of a high temperature and seizures. Doctors diagnosed the child as having a degenerative neurological condition, though the underlying condition or cause remains unknown. Since then, Alfie’s condition has continued to deteriorate, and he has lost most of his brain matter. He was in a coma and on ventilation until this past Monday, when life-support was withdrawn because of a court order.
Last December, the medical center where Alfie was being treated, Alder Hey Children’s Hospital, petitioned the courts to discontinue ventilation and other treatment. The child’s parents, Tom Evans and Kate James, objected and wanted to take Alfie to hospitals in either Rome or Munich. The British courts have repeatedly rejected the parents preference and refuse to allow the infant to leave the country, claiming that it is in Alfie’s best interest to be taken off ventilation and to receive symptom management and palliative care. (Currently, the child is receiving food and fluids, but is not on a ventilator.)
On Thursday, Alfie’s father said he would be meeting with doctors to discuss taking his child home.
Understanding the law
Under the British law known as the Children’s Act (1989), when a court determines “any question with respect to (a) the upbringing of a child; or (b) the administration of a child’s property or the application of any income arising from it, the child’s welfare shall be the court’s paramount consideration.” The legal reasoning of the British courts is that the government is seeking the “best interest” of Alfie and thus has an obligation that supersedes the desire of the parents to seek additional care.
In a decision handed down by the Family Division of the High Court of Justice, a judge ruled that, “The continued provision of ventilation, in circumstances which I am persuaded is futile, now compromises Alfie’s future dignity and fails to respect his autonomy.” On Wednesday, the Court of Appeal—the highest court within the Senior Courts of England and Wales, and second only to the Supreme Court of the United Kingdom—upheld the earlier High Court ruling.
Understanding the ethics
The case of Alfie Evans has a host of ethical difficulties attached to it. A few questions relevant to this case include: When should someone be permitted to die? Under what circumstances is it permissible to withhold treatment and to allow natural causes to end a life? Who has the best interest of the child at heart? What is the role of the parent versus the state in deciding what medical options to pursue for a sick child?
It is within the rights of parents to decide to withhold treatment for Alfie given his grave diagnosis. This would not be considered active euthanasia since the parents would not be intending Alfie’s death, but are electing to no longer use artificial life-sustaining measures to keep him alive. This is not the same thing as killing. Allowing natural causes to end someone’s life is not morally illicit, nor is it in the same category of actively cooperating to bring about someone’s death. The parents are ethically justified to allow their son to die. This is a decision best left to parents, who have a God-given right, and natural right, to decide their son’s treatment.
What is indeed unethical is for the state to intervene against the wishes of the parents, who desire to take Alfie to Italy.
Medical decisions, especially when life and death hang in the balance, should be left to parents, not the state. The state should not interfere or block parents’ wishes to prolong a child’s life. Nor should the state actively procure the death of a child, especially when parents have other options available, as Alfie’s case certainly presents. England’s healthcare system is acting unethically in the case of Alfie Evans. By refusing to allow Alfie to seek treatment elsewhere, the state is usurping the God-given authority of parents over children, and using such co-opted authority to deny Alfie life-sustaining measures, thereby hastening his death.
Parental authority over children is explicit in Scripture (Deut. 11:19; Eph. 6:4). The parent-child relationship is one of divine origin and design, accomplished through the one-flesh union of a mother and father. Scripturally speaking, parents are tasked with raising children. For this reason, the mother and father of a child ought to retain primary authority over the child. This is grounded on the basis of an innate link between parent and child—whether biological or adoptive—and right of the parent over the child. This is both commonsensical and appeals intuitively to our sense of justice.
The love a parent has for a child is unlike any other love a human can know and speaks to the sense of care and best-interest most parents have for their children.