The sad story of baby Joseph Maraachli and his family has captured headlines in Canada and throughout North America. The publicly available information is as follows: he was born in January 2010 and appeared healthy. In May of last year he suffered seizures and spent a month in a children’s hospital in Detroit. Then, last October he stopped breathing and was admitted to the Children’s Hospital in London where he remains. He has been diagnosed with a progressive neurological disorder and is described as being in a vegetative state. His medical team does not hold out any prospect of recovery.
The first tragedy, of course, is the tragedy of this little boy and his family. It is easy to imagine that they went through this pregnancy with all the hopes, dreams (and fears) that most parents have as they prepare to bring a new life into the world. You can imagine their joy as they took their little one home – prepared to welcome this new member of their family. But then – every parent’s worst fear, something turns out to be wrong – seriously and disastrously wrong with their little baby. What are parents supposed to do – and feel when faced with the tragic prospect that their baby is sick, so sick he will not recover , so sick he will inevitably die, so sick that the very best medical experts we can find with all the power of contemporary technology are helpless to make this little one better? How does a parent wrap his or her head – and heart around that message. What would you (or I) or any parent do? Deny? “It can’t be true, there must be a mistake, what about another opinion? What about something else, what about another doctor another hospital, another treatment… What about..? “ How does a parent make the awful realization that now the best he or she can do for that beloved child is provide care and comfort as he dies?
The second tragedy faces the medical team that cares for that little boy. They all came into health care because they care, they wanted to spend their working lives helping make people whole and well. They chose paediatrics for the joy that comes from caring from – and curing little ones, young people who can then move on to lives full of rich promise. But sometimes they can’t. Sometimes with all the skill and knowledge – and all the technology in the world they can’t fix, all they can do – just like the parents is care and comfort as the little patient dies.
So now the stage is set for the third tragedy. What we all seek in health care is agreement. We want patients and care giving teams to agree on and understand the diagnosis, the prognosis, the course of treatment and the expected outcomes of that treatment. All the actors in this tragedy want the same thing. Everyone wants what is best for little Joseph. Our third tragedy is disagreement about what would be best for him. The care giving team believes, in effect, that it would be best to let nature take its course. They believe that we should stop intervening to prolong the suffering of this little one and that he should be allowed to die peacefully; well cared for, and comfortable. The family believes something different. Perhaps they believe that all of the treatment options have not been exhausted. Perhaps they believe that he could be better cared for elsewhere. They want further surgical interventions; surgeries the care giving team believe would be not only pointless but actually harmful to the little patient, the little person, the son who is the centre of all this care.
And so this private family heartbreak becomes public. The disagreement switches to a public agency, the Provincial Consent and Capacity Board, and subsequently the courts to arbitrate what is best for little Joseph. This tragedy appears to make opponents of parties who all seek the same thing – what’s best for Joseph. But there are no opponents here, and there are certainly no winners or losers. There are only different views, different views on what would be best for this little boy given his diagnosis, his prognosis, possible courses of treatment and their effects and consequences. The Consent and Capacity Board, is a neutral, independent body charged with the protection of the most vulnerable members of our society who are not able to speak for, or protect themselves. It, and subsequently the Court, heard those different views and determined that the course of action being proposed by the medical team was in the best interests of Joseph.
Is this a “good” outcome? What on earth does “good” mean here? This is a tragic story with consequences that will haunt those involved for the rest of their lives and the rest of their careers. Everyone would have loved it had Joseph got better and went home. But that did not happen. Everyone wants what is best for him, and everyone would love to get to that place by agreement. But we have not managed that yet – so we are stuck with playing things out through the Consent and Capacity Board and the Courts. It is imperfect, and it cannot relieve the heartbreak, but it does keep Joseph and his interests at the very centre of the discussion and the decision-making. And that might well be the best we can manage.
What exactly is the risk the tracheotomy poses? I think that's the crux of this decision on behalf of the medical community. If the risk is greater than in an otherwise "normal" patient – explain in detail what that difference is. If the risk is not greater, there appears to be some nefarious business going on here. I think this needs to be answered for the public following this case.
Sorry I'm slow in responding — please see the March 31st post — I think it covers the idea you raise. (Rob)
Interesting layout on your blog. I really enjoyed reading it and also I will be back to read more in the future.