The physicians told her parents that she would be deaf, blind, unable to take food orally, and would never walk. Her parents consented to the withdrawal of life-support treatment to allow Phebe to die. However, when the respirator was removed, Phebe started to breathe on her own. The issue, then, was removal of the feeding tube.
The hospital's ethics committee advised it and other necessary treatment should be continued. Ten weeks later, Phebe was discharged into the care of her parents, still needing the feeding tube and other care. The parents are now suing the hospital and its ethics committee for not abiding by their decision to let Phebe die, saying they did not give their informed consent to continuing treatment.
In a recent radio interview, Phebe's mother explained that while Phebe is seriously disabled, she is not blind or deaf, as was predicted, and that they love her. But they are seeking damages to compensate them for the cost of caring for her.
This is an unusual legal claim. It has resonance with "wrongful birth" and "wrongful life" cases, but does not clearly fit either precedent.
In "wrongful birth," the parents sue for having given birth to a child, alleging the birth would not have occurred except for negligence. These cases include failed sterilization, failed abortion, and inadequate or wrong genetic or other risk information the parents relied on in deciding to continue the pregnancy. They claim the costs of raising the child and for other damages suffered.
When the child is healthy, the courts use a rule that the benefits of the negligence - a healthy child - outweigh its harms and the parents do not recover damages. When the child is disabled, the costs of caring for the child are recoverable.
In "wrongful life," the child sues for having been born, that is, alleging that no life is better than life in their disabled state. The courts rarely allow such claims, ruling that life is always better than no life - they don't want to affirm that we're "better off dead" - and citing concern for the precedent ruling otherwise would set regarding disabled people.
This case appears to be a "wrongful continuation of life" claim by the parents. There are some rare precedents for that: An American man, who had signed a "do not resuscitate" order, sued for having been resuscitated. And, a Dutch man sued for negligent euthanasia after he didn't die from the "lethal" injection.
But what ethics and law govern deciding on treatment for an incompetent child?
Who decides?
The parents, physicians and other health--care professionals, the hospital and the state (child-welfare authorities and the courts) can all be involved.
Parents have the primary right and responsibility to decide for their children. But this right is not absolute and narrower than what one may decide for oneself. Competent adults can refuse life-saving treatment for themselves, but not for their children. Decisions must be based on a presumption in favour of life and the child's "best interests" must take priority.
Some people see not providing treatment to a disabled baby and its dying as a result, as being in the child's "best interests." That can be correct if the treatment is simply prolonging dying. But a decision based just on a "quality of life not worth living" criterion is not ethically acceptable.
Physicians have a primary ethical obligation of personal care to each patient, and they too must give priority to the child's "best interests," especially when they might be in conflict with the parents' best interests.
The hospital also has ethical and legal obligations to patients in its care, in particular, incompetent ones.
The state, too, has obligations to protect children. When a parent's decision to refuse medical treatment can be classified as child abuse or neglect, child-welfare authorities must be involved. They usually ask a court to take decision making power or custody away from the parents and place it in some other person or institution. Because Phebe's treatment was continued, this was not necessary.
This brings us to the role of ethics committees. Ethics committees are consultative and in the vast majority of cases their opinions are not binding, but they are very influential.
Hospital policies can require health-care professionals to consult ethics committees in certain circumstances and these professionals can also voluntarily seek advice.
The committee in Phebe's case would have started from a presumption in favour of life, which means withdrawing treatment must be ethically and legally justified. If justification is in doubt, treatment must be continued.
Justifications include that:
The burden and suffering caused by the treatment are not outweighed by its benefits. A feeding tube would not fulfill this requirement.
The treatment is simply prolonging dying, not living. The ethics committee is reported to have expressly found that Phebe was not dying.
The treatment is "extraordinary" - only "ordinary" treatment need be given. A feeding tube is not extraordinary treatment. And if it would be given to a non-disabled baby, it's not extraordinary.
The treatment is "futile." But futility judgments are often covert "quality-of-life" assessments: Treatment is withheld because restoring what the decision-maker regards as an acceptable quality of life is not possible. That impossibility is not, in itself, a justification for withholding treatment. In contrast, "medical futility" - the treatment will have no effect - is a justification.
Withholding food and fluids is a particularly fraught area in ethics. When food and water can be taken naturally, it must be provided. Whether intravenous hydration and nutrition is life-support treatment that may be withdrawn, when withdrawal of life-support, in general, is justified, is an ethically contentious issue. And in which of these categories a feeding tube fits and in which circumstances, likewise. However, we must err on the side of respect for life, as the ethics committee did. Not to continue hydration and nutrition would have resulted in Phebe dying of starvation and dehydration, not any underlying disease.
The committee would have considered whether withholding treatment was discrimination on the basis of disability, which is unethical and illegal. If a feeding tube would not be withdrawn from a child without disabilities, who was not dying, it must not be withdrawn from a disabled child.
The committee might also have considered the precedent withholding life-sustaining treatment from a disabled baby would mean for other disabled people.
Phebe's case is likely to deliver very important messages about the ethical and legal rights of disabled babies and disabled people, in general, to medical treatment and to the "necessities of life," hydration and nutrition.
Margaret Somerville is the founding director of the McGill Centre for Medicine, Ethics and Law.
