Baby Isaiah: Is Futile Care for the Living or the Dying?

Medical advancements have pushed us into a climate where anything that can be done for a dying patient often is done, and just as often without the patient's consent. What specific care a patient may wish is often not documented properly - all care scenarios are difficult to anticipate - or family members or hospitals may disagree with that wish. Grief is a powerful force; our desire to hold onto the beloved sometimes supplants what is best for the beloved.

The result is what is called "futile care": medical treatments that do nothing to improve a patient's condition and often inflict undue stress and suffering on the patient but that offer hope to the family and those involved in the process.

Alex Schadenberg at Canada's Euthanasia Prevention Coalition summarizes a recent case in that country that addresses futile care and - I think - asks us to consider whom that futile care benefits:

Baby Isaiah was born with the umbilical cord around his neck after a 40 labour in Alberta. He was not breathing when he was born but was revived and sent to the Stollery Children's hospital in Edmonton Alberta.

After approximately 90 days of receiving care, the parents of Baby Isaiah - Rebecca and Isaac May, were told that the hospital would withdraw the ventilator from Baby Isaiah.

The parents went to court to request another 90 days of care to give Baby Isaiah a chance to further improve. When speaking with Rebecca May, she made it very clear that they hoped to be able to bring Isaiah home and care for him. She understood that Isaiah may not survive very long and if he survived, that he may be profoundly disabled, but she was willing to care for him and love him, no matter what happened.

The Euthanasia Prevention Coalition has supported the wish of the May family to give Baby Isaiah a chance to improve to the point where they could bring him home.

While Schadenberg has properly and adequately explained that removing Isaiah from artificial life support would not be "euthanasia," he and his organization have strongly backed the May family in their fight against the hospital, citing the "precedent" that the case sets.

Like many other organizations around the world, Schadenberg and others have highly publicized Baby Isaiah's "struggle" as a "pro-life" cause. Schadenberg explains why:

Modern bioethics has bought into futile care theory. Futile care theory originally focussed on withdrawing treatment when it became futile, burdensome and ineffective. Over the past decade, and more, futile care theory now focusses on withdrawing effective treatment from patients that are deemed to be futile.

The ventilator is effectively providing oxygen for Baby Isaiah, who is growing and physiologically thriving with the care. The hospital and the physician view Baby Isaiah as being futile and believe that they are wasting the resource of the ventilator on a futile patient.

If the May family loses this court case consider where the issue may go next. People with alzheimers or dementia, people with profound disabilities, and more.

Next consider how such a legal precedent could be used if euthanasia ever became legal in Canada.

Schadenberg and others have tacked the term "theory" onto the end of futile care, a rhetorical calculation that has effectively been used to conflat the definition of scientific theory (set of principles that explain natural phenomena) with a theory in everyday life (a guess) - made popular in regards to evolution.

As Susan Jacoby writes, "The popular 'just a theory' argument rests not only on religious faith but on our national indifference to the specific meanings of words in specific contexts."

With this distortion, "pro-life" groups can debunk medical (and any other) science when they like in lieu of hope for a miracle from God. And indeed, medical science is not foolproof any more than the human body is uncomplicated. (Schadenberg's explanation is fraught with other exaggerations and assumptions as well: futile care is really necessary care, viable patients are removed from necessary care, Baby Isaiah is "thriving," removing one patient from artificial life support threatens other patients....)

But the real point of this post is this: Whom does futile care serve?

A clue may reside in a recent quote by Bobby Schindler, brother of Terri Schiavo and founder, with his parents, of the Terri Schindler Schiavo Foundation, dedicated to a Catholic, "pro-life" agenda of "protecting" those who have suffered severe disabilities from removal of artificial life support. Schindler stated regarding caring for those like his sister:

"They allow us to show our compassion, our love. I believe that they are blessings.

“And if you talk to families that are caring for people like my sister, they look at their loved one as a blessing – to be in this position of having to care for them – because they are completely vulnerable to us."

There's something inherently subversive about loving someone because they are completely vulnerable to you, about prolonging the life of a body for one's own redemptive sacrifice and subsequent "blessing." Schindler slips in "having to care" as an indication that the choice is not ours but presumably God's.

The foundation of this desire to love the vulnerable is, of course, compassion. But also, as medical ethics works to guide us through questions of artificial life support, I believe, it is also one of theological purpose. The "pro-life" stance that all life is sacred is on the face very noble and just. Not until applied to real life examples does the protection of that "sanctity" at all costs exemplify discrimination: opposition to contraception, women's and patient's rights, and to the wishes of the dying. It is in that opposition that the suffering of the other is imposed for the sake of one's own redemption. When "having to care" for a vulnerable person, God teaches us the benefits of unrequited love, of suffering, of patience.

I'm not able to speak specifically to the May's decision. I don't know their purpose. But when the private struggle of an infant is prolonged and made an example of vulnerability, an example of God's plan, a cause for hope of miracles and a case against some hypothetical "slippery slope" preying on the terminal, the disabled, the elderly, the compassion for a brain-dead child and their family is lost and subverted. They've become a cause, an argument against science and a justification for futile care.

That our lives are redeemed by suffering, that we are made better, indeed won to the bossom of Christ, by our pain, grief, and abject self-sacrifice is strongly entrenched in fundamental religious ideas - those currently and strongly espoused by the Catholic and Fundamentalist organizations that comprise the current "pro-life" movement.

Caring for the "least of these" should not demand prolonging their lives at all cost so that we can love unconditionally, so that we can suffer in that caring process in order to be closer to God. Somewhere in the argument the ability to accept death and the innate course of human life must figure. Our redemption must not feed on the suffering of others.