ST. LOUIS POST-DISPATCH
Thursday, March 17 2011

Lessons of baby Joseph
By Colleen Carroll Campbell

What do you do when a patient or his family wants a life-enhancing or life-sustaining treatment that a hospital refuses to provide? In the United States, the patient or family sees another doctor or hospital. If the request is legal, ethical and reasonable, and they can find a way to pay for it, they usually will find someone to fulfill it.

In Canada, the patient and his family lose.

That's what happened to the parents of 13-month-old Joseph Maraachli, the sweet-faced, severely ill Canadian boy airlifted on Sunday to SSM Cardinal Glennon Children's Medical Center in St. Louis. Joseph suffers from a neurological condition that doctors have described as progressive and terminal, similar to one that killed his older sister. Since October, he had been surviving on breathing and feeding tubes at Ontario's London Health Sciences Centre.

When it became clear last fall that Joseph probably would not recover, his parents asked the doctors in Canada to perform a tracheotomy, a common medical procedure that entails inserting a small tube directly into the patient's windpipe to allow for easier breathing and avoid the less comfortable breathing tube inserted through the nose or mouth. A tracheotomy requires light anesthesia, entails minimal discomfort and often allows patients to speak, eat or drink normally.

Doctors had performed the procedure on Joseph's sister, which helped allow her to live at home for six months before she died. But when his parents requested the same for Joseph, his doctors declined. They said a tracheotomy would extend Joseph's life but not improve its quality. The decision left his parents anguished.

"I lose my baby," Joseph's father, a Lebanese immigrant to Canada, told the Toronto Sun. "They take him from me. I don't lose my baby like God take him. They take him."

After fighting the hospital and losing appeals to a government-run health care panel and the Canadian courts, Joseph's parents drew the attention of Priests for Life, a non-profit, pro-life organization that offered to pay his medical expenses if a hospital in the United States would perform the tracheotomy. Cardinal Glennon admirably answered the call. Just hours before his Canadian hospital would have withdrawn life support, Joseph was transferred here.

Decisions in medical cases like baby Joseph's rarely are easy. But a hospital's refusal to allow a reasonable procedure so that a terminally ill child can die at home under the conditions requested by his grieving parents is disturbing.

Even more disturbing is the way Canada's government-run health care system and its courts rebuffed Joseph's parents in their search for alternatives. That Joseph's parents could find a satisfactory resolution only by turning to the United States reminds us that America's health care system has safeguards against state-sponsored rationing and health care monopolies that the government-run systems of other countries often lack.

It's unclear if those safeguards will survive Obamacare. If implemented in its current form, they very well may not. The law will bring about a great deal of consolidation in health care, leaving fewer insurers and hospital systems and putting them all under the thumb of public cost-control imperatives.

"Replacing competitive pressures with government cost controls inevitably takes some decisions about care away from doctors and patients," said health care policy analyst Yuval Levin of the Ethics and Public Policy Center in Washington, D.C.

All that grand talk of patient autonomy and quality-of-life improvements may take a back seat to cost control. And the opponents of "death panels" once derided for their alarmism may look prophetic, given that the new "Independent Payment Advisory Board" created by the law will have the power to deny Medicare payments for services not deemed cost effective, and its decisions for Medicare will reverberate throughout the health sector.

Even in our current health care system, serious threats already exist. The bias toward extending life that sometimes drove doctors to pursue extraordinary and burdensome measures in the care of the dying increasingly is giving way to another, more problematic bias: a tendency to allow subjective evaluations of a patient's "quality of life" to disqualify him from receiving even basic care, including food and water. It's a dangerous trend and we only need look to the Netherlands to see where it leads. There, child euthanasia is legal and regulated by the Groningen Protocol, which cites such subjective measures as "hopeless and unbearable suffering" as reasons for parents and physicians to put sick infants to death.

The leader of Canada's Euthanasia Prevention Coalition has said that baby Joseph's case does not involve euthanasia. Yet the coalition has helped Joseph's parents raise awareness and funds because it regards their case as emblematic of authoritarian excesses of Canada's health care system.

Such systems too often err on the side of saving a buck rather than saving — or, at least, extending or enhancing — a life. Given the creeping loss of respect for the intrinsic value of human life in many corners of medicine and still unclear implications of Obamacare, little Joseph's plight portends trouble for patients on both sides of our northern border.

Colleen Carroll Campbell is a St. Louis-based author, former presidential speechwriter and television and radio host of "Faith & Culture" on EWTN. Her website is www.colleen-campbell.com.