Thursday, March 31, 2011

A little more on Baby Joseph

The current development on this story is that Baby Joseph has been transferred to a US hospital where a tracheotomy has been performed. The longer term objective is to transfer him home to die. So what should we say – or think about this outcome. If the procedure could be performed in the US why was it not performed here? Well, none of us were in the room when these questions were discussed but the course of events could have gone something like this:

The Canadian health care team believed that performing a tracheotomy with the sole purpose of sending the patient home to die was a cruel and unnecessary treatment. They believed that the patient would be harmed by the procedure which would bring no benefit to the patient. They believed that they have a commitment to the patient not to cause harm, in particular not to cause unnecessary harm. They understood that the parents wished to take baby Joseph home but they were not prepared to harm their patient in order to enable that to happen.

But if that is so how could another medical team come to the exactly opposite conclusion? How could they be prepared to perform the procedure? First, I think we need to assume that the baby’s medical condition has not changed, that is, the US health care team also believed that the purpose of the tracheotomy was to enable the child to return home. They would have to believe that the procedure could be performed without harming the patient and also that if that could be done it would be worthwhile doing it to benefit not the patient – but the patient’s family. I think they probably made a decision to perform the procedure on the child for the benefit of the family, believing that that could be done without harming the child.
How does that sound? Some commentators have accepted precisely that view. They have argued that if the procedure could be performed without causing suffering or discomfort to the child then why not perform the procedure to allow the parents’ the closure they so fervently desire. Why not “treat” the patient to heal the family?

What do you think?

I do think there is still something more to say. Even if the procedure causes no further suffering or discomfort I still have grave worries that it should be performed. “Treating” the patient to heal the family entails using that patient, that person, as a means to someone else’s objectives. It means using that person as a thing – an object to be, in this case, cut, to benefit someone else. I think, in practice, this is not uncommon. Think of the times an elderly patient is resuscitated, at the demand of the family, only to languish for days or weeks on life support in the ICU, only to die without ever having regained consciousness. All too often this is done – without there being any prospect of benefit for the patient just so the family can say – and feel “We did everything...” I think we can do better. I think we can make it far clearer that we have “Done everything” and that often merely keeping a person’s body alive – even if we have the technology to do so brings no real benefit. I think it is possible for good and loving families to work with their health care teams to do everything that might benefit the patient – but nothing that doesn’t.

What do you think?

Wednesday, February 23, 2011

Navigating Tragedy(ies): The sad story of Joseph Maraachli

Navigating tragedy(ies)

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.

Sunday, January 30, 2011

On "Rationing" in Health Care

For many years the Lung Association in conjunction with the Ontario Thoracic Society have featured debates as part of the format of their conferences. These debates are intended to be a serious and provocative look at a significant topic but presented in a way that is engaging and at least a little playful. I was involved in one of these debates over the weekend on the topic of “rationing” in universal health care. As it turns out I was charged with defending the view that “rationing” ought not to be a part of universal health care. The actual content of the debate – and the cut and thrust of the debate format are not really the focus of this post – but the underlying issues that rose to the surface are worth discussion.


There are some things that are clear. Demand for health care services is unlimited – and supply of those services – or the resources to meet the demand is limited. So there has to be some way of matching the supply with the demand, some way of allocating the scarce resource. On the rationing side of the debate it was argued that, from an economist’s perspective, anything other than a free market entails rationing (by definition) so, as we do not have a free market in health services there must be rationing. Unfortunately the debate got rather stalled at this point – it became a discussion of what the word or concept “rationing” might mean. I think it is quite possible to argue in ordinary language that “rationing” means something like equal shares or allotments but I don’t think this is the real issue – the issue that actually warrants discussion is what do we do when our unlimited demand for health care services outstrips our capacity to meet that demand?


There are several special features of health care (or perhaps more properly we should call it “sickness care”) that warrant our particular attention. In the first place one does not need “sickness care” until or unless one is sick. That is, “sickness care” responds to a need, perceived or actual. On our model of sickness care we are not required to allocate the resource to those who are not sick, to those who do not need it. Next, health or sickness care services can only be delivered by professionals with a highly regulated form of training. And finally, on our model of health care, those services are, more or less, only paid for by a single payer – the government.


Now we can ask the interesting, and difficult, questions. Who decides what health or sickness care services should be paid for by the government? And what sort of a decision is this? I think these questions are interesting and difficult because they require a wide range of different types of expertise to answer – and they do not fall cleanly into the decision-making jurisdiction of any neatly defined entity. So, the decision about what health needs should be funded is not simply a “medical” decision to be made by medical practitioners. Nor is it simply an economic decision to be made by health care economists, nor is it just a political decision to be made at the ballot box. Rather it is a question – or series of questions about what we, as a community, value – and how our values in health care stack up against other community values, like education, or security, or roads, or art – or indeed the ability of each of us to spend our own money as we wish. Let’s make this concrete – do we as a community wish to fund keeping a person’s body alive when there is no reasonable prospect of a meaningful recovery? Do we spend tens of thousands of dollars on a cancer drug that may extend life by a couple of months? What other things are we prepared to forego, including funding for prevention in health care, in order to make those expenditures? Who should make those types of decisions – and what should count as a reason one way or the other?


But there are more questions that are worth asking. What do we, should we, say about those health care services we, as a community, decide should not be funded? If we choose not to fund the cancer drug that may only bring a couple months of extended life, should we allow individuals to spend their own resources as they wish and purchase health or sickness care that the community is not prepared to fund?


I think these are the difficult choices that we currently face in health care. I think this discussion can easily get derailed by a focus on the concept of “rationing” which can obscure the real questions and distract us from the difficult task at hand. What do you think?