Roger writing the LAWmag
12
May 2012

In Extremis Justice: The Baby Joseph Tragedy

The law, justice, as always, is called upon when divergent and strongly held opinions as to what is right and wrong, collide, unyielding.
 

The right to life often rubs against the obligation of the state to subsidize the significant day-to-day expenses of keeping a comatose patient alive where there is no prospect of recovery. When sparks fly, this profound collision is left at the doorstep of some court of justice to resolve, hopefully with the wisdom of Solomon.

As with any legal case, a truth any clever lawyer would tell their client at least once before knocking on the door of the law courts, litigation always results in one winner and one loser.

Especially in medical ethics cases.

Joseph Maraachli was born in Windsor Ontario on January 22, 2010. His parents, recent Lebanese immigrants, took him home where he first appeared normal and healthy. But he was born with a fatal neurologically disabling disorder later diagnosed as Leigh's Disease.

In October of 2010, baby Joseph stopped breathing and was rushed to hospital in London, Ontario. There he was stabilized and thoroughly tested, his condition diagnosed and the parents advised that his chances of recovery were nil. He could no longer breathe on his own, his head had stopped growing, his pupils did not respond to light, and he was having seizures.

hospital roomThe doctors at the London hospital told the Maraachlis that their infant was in a persistent vegetative state. The best the hospital could do would be to keep the baby alive through intensive care and life-support systems (at $11,000 a day).

The parents asked for a tracheotomy, thinking this would allow Joseph to breathe on his own and he could then be taken home where he could die naturally and, the parents assumed, peacefully. They even proposed that the baby could last another six months under these conditions.

Events raced to its inevitable judicial collision. The hospital refused to perform the tracheotomy saying that:

"A tracheostomy would likely provide for a longer period of life, however, in our view would not result in improvement of well-being and could reduce quality of life."

It would just delay the inevitable and likely cause a host of new problems such as infection and pneumonia.

One of the doctors suggested that the baby's breathing tube be removed so that he could die naturally of the hospital.

The parents, facing the greatest loss known to man, continued to refuse consent to removing the breathing tube without a tracheotomy. The father later said:

"I don't want to feel guilty. I don't want to kill my blood."

They became desperate and took their case to the press, and the hospital to the administrative tribunal, the Consent and Capacity Board of Ontario, seeking approval of the plan to remove the breathing tube.

The hearing before the board took place on January 18, 2011, delayed by a whole month when father insisted on an Arabic translator:

"Even though he spoke and understood English reasonably well."

The Board sided with the hospital quoting from an English judge, Justices Sloss and Goff who had stated in Airedale NHS Trust v. Bland:

"The duty of the doctors towards a PVS (persistent vegetative state) patient at the extreme end of the spectrum does not extend to prolonging his life at all costs...."

"I cannot see that medical treatment is appropriate or requisite simply to prolong a patient's life when such treatment has no therapeutic purpose of any kind, as where it is futile because the patient is unconscious and there is no prospect of any improvement in his condition.... (I)n the end, in a case such as the present, it is the futility of the treatment which justifies its termination."

And this from Justice Schreiber of the Supreme Court of New Jersey in Re Claire Conroy:

"The medical and nursing treatment of individuals in extremis and suffering from these conditions entails the constant and extensive handling and manipulation of the body. At some point, such a course of treatment upon the insensate patient is bound to touch the sensibilities of even the most detached observer. Eventually, pervasive bodily intrusions, even for the best motives, will rouse feelings akin to humiliation and mortification for the helpless patient. When cherished values of human dignity and personal privacy, which belong to every person living or dying, are sufficiently transgressed by what is being done to the individual, we should be ready to say: enough.”

The parents appealed the decision seeking a judicial review, heard by Justice Helen ready of the Ontario Superior Court of Justice February 17, 2011. The appeal was dismissed and the removal of the breathing tube scheduled for February 21.

The Maraachli's fired and hired new lawyers, to try to have their baby transferred to a hospital in Detroit.

February 21 came and went with removal of the breathing tube delayed because it appeared that the family wanted to appeal Justice ready's decision.

The Maraachli's stepped up the media campaign and caught the attention of an american pro-life, anti-abortion special-interest group, Priests for Life, obviously with some money. With a guarantor for medical expenses, a hospital in St. Louis, Missouri agreed to sell hospital resources, receive the baby and to perform the tracheotomy.

In part, the tracheotomy was successful as the baby lived a further six months, dying in his sleep on September 27, 2011, at the age of 20 months (and at home as his parents wanted).

Joseph never was able to give his opinion on the debate about life-support under his circumstances.

His two angry and resentful parents1 live on, as does the inevitable legacy of scarce health care dollars spent on anybody in a persistent vegetative state, although the parents would probably argue that since they were sure their baby was responsive to them, he was not in a PVS.

It was one of those rare cases where, in the result, there was no winner and no loser.

Except, perhaps, the law, as it emerged wiser and closer to that sometimes elusive goal of justice even in desperate circumstances swarming with profound medical ethics issues.

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