Views of euthanasia for sufferers of genetic disease: Comments on the Felon case

Journal: American J. Medical Genetics 58 (1995), 379-80.
Author: Darryl R. J. Macer
The letter of the Hechts, and their translation of the court decision in the Felon case, make us think about the issue of euthanasia of sufferers of genetic disease. The issue is not unique, but the openness of the euthanasia, and the tenderness of the court, makes the case interesting. There are numerous perspectives we can take, and it may be helpful to look at the case through different sets of eyes.

The judge had to decide whether to give a punishment to the mother beyond that of the memory of killing her own son. The decision not to give punishment is a humane one, and justified as the mother does not threaten public safety. However, another purpose of justice is to set up deterrents for those who want to extend a practice down a slippery slope. Europeans are especially sensitive, given the example of the Netherlands which has legalised physician-assisted euthanasia of consenting individuals. In this case, the son asked his mother after an upsetting day, and one could question whether he was of his balanced mind when he "consented". Also, the legal case supporting her would have benefited from the counseling and discussion of third parties, who could verify what he said. In this way the judge could express their opinions about the ideal case and other factors.

One could argue that the policy maker should allow each judge the discretion to decide the appropriateness of criminal sentences, and this is why we have judges. The policy maker may decide for future cases, but should stay out of the detailed decision-making of individual ones. Even if the mother made a mistake of ethics and law, she will suffer enough punishment from her own doubt and possible guilt. The law must have some compassion for those guilty of a crime, and it is practically distasteful and useless to have a law saying mothers cannot shoot their sick sons.

For the mother, she had seen her son's suffering throughout his life, and the worst thing is that she may sometimes wonder whether she made the right decision. She must face this also with looking everyday at her other sons. The condition was liveable for some, but for others it would be too severe to be happy, as it appears in this case. Not everyone marries, and the argument would be that he might have been able to live without sexual relations. However, who can be a judge of others ability to be content better than our own mother and father? No one is perfect, and we must live with the consequences of our decisions, some of which are the result of fate.

The father represents the other family members, and was not actively involved in the euthanasia, but understood the situation at least as well as the mother. Especially in this case, he may have remembered the courting of his youth, and felt the guilt of a parent whose child suffers from genetic disease. He can only love his wife and other sons more, and together they can grow out of the tragedy. The situation is more complex because of the frequency of congenital malformations in the family, but they can learn from the deceased son.

For the doctors, they share the sense of failure that the parents may also have. There may be the extra counseling session that could have been organised. Life long counseling may be needed. The question of sexual therapy or any other alternatives that they could have offered, or recommended more strongly. The health care providers need to feel this sense of guilt if they will grow into more understanding and mature persons, able to serve persons with the variety of afflictions. In the end, euthanasia should be independent of doctors if the persons have their own ability to perform it.

As outsiders, we should think about the boundaries to ethical euthanasia. Without the sense of involvement we should only prepare ourselves for the case should it happen to us. Outsiders should not be judges of the family tragedy, but rather should learn tolerance for persons with congenital malformations. If it were not for more understanding the girlfriend may not have left the son, and would have accepted him for what he was, with or without normal genitals. However, we can also understand that she was not prepared enough by the society to accept him, which reflects on the broader community.

Finally, for the son. He may rest in peace, a victim of inadequate acceptance in society of those who are seen to be abnormal, and also a victim of fate. We could say that if he couldn't live as he was, and couldn't seek help, he should have killed himself rather than lead his mother into the situation where she felt she must kill him. This however, sets another dangerous precedent, as there are too many suicides for society to accept such a comment. In this case , the common perspective we can all take is that of learning the difficulty of living life - something that those with congenital malformations often do better than those without them, but there are limits for us all.

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