Withdrawing life-sustaining treatment from an infant and rights of conscience

The is currently a legal (and ethical) debate in Texas over the treatment of a one-year-old infant, Tinslee Lewis (see articles in the Hastings Center Bioethics Forum and the Fort Worth Star-Telegram). Tinslee was born prematurely with a congenital heart defect and subsequent severe lung disease. She has had multiple surgeries and is on a ventilator in ICU. In October Cook Children’s Hospital, physicians, and ethics committee made a decision to remove her from the ventilator in spite of her mother’s desire to have the ventilator continued. This was done in accord with Texas law which allows a hospital to stop life-sustaining treatment of a child against the wishes of the child’s parents if the treatment is futile. Tinslee’s mother went to court and obtained an injunction to keep the hospital from withdrawing the treatment. In January the court decided in favor of the hospital that the treatment could be withdrawn, but that decision was appealed and is now being heard in a Court of Appeals. There are two issues at stake. One is who should be the final decision-making authority for Tinslee. The other is whether the current Texas law is constitutional.

The hospital says that treating Tinslee with the ventilator is causing suffering without medical benefit and that her physicians have a right to decline to participate in such treatment. They support the current Texas law which would allow the hospital to stop the treatment. Tinslee’s mother says that her daughter is not suffering and has actually recently improved. Her lawyers say that the current Texas law is unconstitutional. The two sides have been joined by interesting supporters. The hospital has been joined by the Texas Catholic Conference of Bishops and several other groups including a pro-life group and a disability rights group who argue that the current law provides protection for patients and protects rights of conscience for physicians. Tinslee’s mother has been joined by the Texas Solicitor General and the Texas Attorney General who are seeking to overturn the current Texas law.

The basic ethical question is whether rights of conscience apply in this situation. The physicians and hospital say that they believe that continuing the ventilator is wrong because it is causing suffering without medical benefit and they should be able to refuse to provide a treatment they believe to be wrong because of a right of conscience.

I think that rights of conscience for physicians and other medical providers are very important. However, there is a significant moral difference between the usual understanding of rights of conscience in which physicians refuse to engage in actions they believe to be inherently morally wrong. A physician who refuses to be involved in abortion or euthanasia does so because he or she believes that such actions are inherently wrong. The physicians in this case do not believe that treating an infant with a ventilator is an inherently wrong action. It is quite likely that these same physicians recommended the use of the ventilator and encouraged Tinslee’s mother to see this a treatment that was good for Tinslee and which they could make as painless and comfortable for her as possible. The decision to stop the treatment which they once recommended is a judgment based on their values that the burden of the treatment has become more than the benefit of the treatment. That is significantly different from a refusal to participate in a treatment which the physician believes to be inherently wrong. The burden of being on the ventilator is no different than it was when it was started. The ventilator continues to be effective in performing its function of supporting respiration. What has changed in the physicians’ minds is whether the benefit of extending this child’s life is worthwhile. That is a decision that should be made based on the values of her mother, not the values of the physicians.

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