Phebe Mantha, a 16 month old, seriously disabled, baby girl, is at the centre of a Montreal court case. She was injured during birth and as a result is brain damaged. Shortly after her birth, she was transferred to the Montreal Children’s Hospital and placed on life support.

The facts as revealed by media interviews with Phebe’s mother and grandfather seem to be as follows: After listening to the physicians describe Phebe’s prognosis -- that she would be deaf, blind, and 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 whether the feeding tube should be continued.

Pursuant to hospital policy, the hospital’s ethics committee was consulted. It advised that the feeding tube and other treatment necessary to maintain Phebe’s life must be continued. That advice was followed by hospital staff. Ten weeks later Phebe was discharged from the hospital into the care of her parents. 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 interview on CBC’s The Current, Phebe’s mother explained that while Phebe is seriously disabled, she is not blind or deaf, as the physicians had 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" suits, the parents sue for having given birth to a child, alleging the birth would not have occurred except for negligence, usually that of a physician. These cases include failed sterilization, failed abortion, and inadequate or wrong genetic or other risk information that the parents relied on in deciding to continue the pregnancy. The parents sue for the costs of raising the child and other damages they’ve suffered.

In successful suits, when the child is healthy, almost always 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 a "wrongful life" suit, the child sues for having been born, that is, alleging that no life is better than life in their disabled state. The courts have rarely allowed such claims, ruling that life is always better than no life – they do not want to affirm that we’re "better off dead" – and citing concern for the precedent that ruling otherwise would set with respect to disabled people in our community.

This case appears to be a "wrongful continuation of life" claim by the parents. There are some rare precedents for that: In an American case, a man sued for having been resuscitated when he had signed a "do not resuscitate" order. And, in a Dutch case, a man sued for negligent euthanasia, when he didn’t die from the "lethal" injection.

But this case involves an incompetent child, not a competent adult deciding for themselves what treatment to have or refuse. So what ethics and law govern it?

The parents, physicians and other healthcare professionals, the hospital and its ethics committee, and the state (child welfare authorities and the courts) can all be involved.

Parents have the primary right and responsibility to make decisions for their children. But this right is not absolute and not as broad as what one may decide for oneself. Competent adults can refuse life-saving treatment, such as a blood transfusion, for themselves. They cannot do that in relation to their children.

Much as our hearts go out to parents in cases such as we’re discussing, they can be in conflict of interest – what might be in their "best interests" might not be in their child’s "best interests". The child’s "best interests" must take priority".

Physicians have a primary obligation of personal care to each patient, which means they must always give priority to the patient’s "best interests".

One major issue here is that 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 and all decisions must be based on a primary presumption in favour of life.

The hospital also has ethical and legal obligations to patients in its care, especially 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, legally, the case must be referred to child welfare authorities, who usually ask a court to take decision making power or custody away from the parents and place it in some other person or institution. There was no such report in Phebe’s case, because the feeding tube and other treatment (what that consisted of beyond the feeding tube is not clear) was continued pursuant to the ethics committee’s advice.

Ethics committees are consultative and in the vast majority of cases they have no decision making power. (The exception is the very rare situation where a court authorizes an ethics committee to oversee treatment decisions for an incompetent person or one held in legal custody who is refusing treatment.) In short, their opinions are not binding.

Hospital policies can require that healthcare professionals consult ethics committees when certain circumstances arise and these professionals can also voluntarily approach ethics committees for advice. Not to do so, where a reasonably careful and competent healthcare professional would have done so, could be medical negligence – malpractice.

So what factors might the ethics committee have considered in rendering their advice?

They should have started from a presumption in favour of life. That means the persons wanting treatment withdrawn would have to ethically and legally justify that withdrawal. If there is doubt as to justification, the treatment must be continued.

Ethical and legal justifications for withholding treatment 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.
• Only "ordinary" treatment need be given, not "extraordinary" treatment. Care is needed not to classify Phebe as extraordinary, because she’s disabled and withhold treatment on that basis, rather than classifying the treatment. A feeding tube would not usually be extraordinary treatment. And if the treatment would be given to a non-disabled baby, it’s not extraordinary.
• The treatment is "futile". But judgments of futility 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, likewise. Whether or not that is ethical, probably depends on all the circumstances of each individual case. However, we should always 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.

Finally, the committee would have considered whether withholding treatment in this case 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 that withholding life-sustaining treatment from a disabled baby would mean for other disabled people.

Whatever its outcome, 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.