Mr. Speaker, I thought that rather than giving my rationale and telling people how I will vote at the end, I would do the opposite.
I want to say, first of all, that I will be voting yes at second reading to this bill, so that it can be sent to committee where it can be discussed in principle, and perhaps be amended to make it better than it currently is.
At third reading, I will be guided in my voting by the instructions of my constituents. I am mailing out what I call a constituency referendum. It is effectively a survey designed to ask them in as impartial a way as possible how they would have their member of Parliament vote. The reason I am doing this is that I believe, when it comes to a profound issue of conscience like this, the consciences of my constituents are every bit as good as my own conscience, that of the other members of Parliament, or the people on the Supreme Court of Canada. They will guide me at third reading.
My comments today are, therefore, about the underlying issue that I think is at stake here as we, meaning Parliament, the courts, the policy-makers here in Canada and frankly in every country in the world, must face as we deal with the realities of life and death at this particular moment in time.
Right now, and this is not something that has always been true in our history, life is expensive, maintaining life is expensive, and death is cheap. This is something that has not been true throughout our history.
Anybody who reads the novels of the Brontë sisters is aware of the fact that in the mid-19th century, and in every century before that, life was relatively inexpensive to maintain, in part because the ability of medical technology to keep people alive was so limited. The doctor would arrive, perhaps bleed someone if they had a simple fever, and then, at least this is how it happens in the novels, advise the relatives to prepare themselves. The financial difference between life and death was very limited.
That is no longer true. I want to make this point in the context of a health issue that has nothing to do with euthanasia or the assisted suicide or assisted dying debate, but it really illustrates just how expensive life is in a world of improved technology and pharmaceuticals.
This month, May is cystic fibrosis month. I know somebody who has cystic fibrosis, and I have become very passionately involved in this. Every year, I encourage members of Parliament to wear a rose, and we will all be doing this next Wednesday, in honour of those who have cystic fibrosis. I wear the cystic fibrosis pin today.
Now there was a drug introduced in 2012, called ivacaftor, trade name Kalydeco, which, for the 4% to 5% of cystic fibrosis patients who have the delta-F508 mutation of the gene with the CFTR protein, for that small segment of cystic fibrosis sufferers, this drug effectively turns what would otherwise be a terminal disease into a manageable illness that is problematic but not fatal.
It is available at a very high cost to them, their families, or the public health care system, depending on where the patient lives. The cost to get access to Kalydeco is approximately $300,000 American per year. The patents on drugs are typically about 20 years long. Presumably at the end of that 20-year period, the cost will drop dramatically, but right now it is $300,000 per year. Members can do the math, $300,000 times 20 means that it is $6 million to keep one individual alive.
It is well worthwhile, but the fact is that life is expensive, whereas denying them this care, and some provinces do not give public funding for the drug, is cheap. That costs very little. I do not mean to suggest that the drug company is charging unreasonably, or any of these other subsidiary questions. It cost $458 million for Vertex, the company that developed this drug, to bring it to market. My observation is simply that life is very expensive and maintaining life is expensive. Death is cheap.
Now, turning to palliative care, of course it costs a great deal less than this to keep people alive on palliative care at the end of their lives. However, the fact is that denying care is less expensive. This is exclusive of the Supreme Court ruling. It is exclusive of whatever is in Bill C-14 or should, or should not, be in Bill C-14. This creates a dynamic in which there is a strong financial incentive for policy-makers to promote the less expensive option, as there is in everything.
In this case, it means that the incentive to do what is necessary to allow the life option as opposed to the death option is reversed or weakened. This means the incentive to not provide palliative care is going to be very strong.
In this situation, the Supreme Court of Canada ruling in Carter v. Canada is likely to have tilted the dynamic in favour of death as a solution to the high-cost problem of maintaining lives that are deemed to be not worth living.
To make the point about how this is relevant, I want to quote from what the health minister said on the Friday before the break, in her speech on the issue. I had the good fortune to be able to question her afterwards about this. She said:
Today, Canadians are aware, and have a general understanding, of palliative care. However, some studies have [shown] that the overwhelming majority, perhaps 70% or more of us, do not have access to it, particularly in rural and remote areas. Many providers are not well trained to provide palliative care services.
I think she was just presenting what she regards correctly, as a fact. However, read this a different way and a more sinister meaning becomes evident. We lack the funds, or the provinces lack the funds, for palliative care, but death is the less expensive way to ensure that no one lives an unbearable life.
Again, I do not think she meant this in a sinister way. The implication was simply there to be found, and taking her words and reading them a little differently, we see that implication.
Faced with this problem, the problem brought upon us by the fact that we can extend life in a way that never could before but with limited funds and, inevitably, there are not enough funds to deal with all the life needs that are out there, the wrong move taken for a reason that seems noble but is poorly thought through could have disastrous consequences.
To make this point, I want to turn to one of the best books on public policy I have ever read, Lectures on the Relation between Law and Public Opinion in England during the Nineteenth Century, by the great Albert Venn Dicey.
Writing about Lord Shaftesbury, the well-meaningful philanthropist and statesman, he writes something that I think could well be applied to the Supreme Court's ruling in Carter v. Canada:
...the natural desire of an ardent philanthropist to save from immediate suffering any class of persons who are unable completely to protect themselves against oppression, and to do this by the means which lie nearest to hand, without deeply considering whether action which gives immediate relief to [these] sufferers ...may not possibly in the end produce evils of untold magnitude.
In response to this, the danger is that we will do what Dicey warned about Parliament reacting. He was talking about the British Parliament. He was writing of a different century, but this is a warning that is well taken by any Parliament dealing with this kind of situation.
He said:
...laws passed to meet a particular emergency, or to satisfy a particular demand...produce, in the long run, more effect on legislative opinion than a law which openly embodies a wide principle. Laws of emergency often surreptitiously introduce or reintroduce into legislation, ideas which would not be accepted if brought before the attention of Parliament or of the nation.
This legislation is being introduced in haste in response to an artificial deadline, and it is an artificial deadline, set up by a Supreme Court which has a noble goal in mind but which has not, in my view, looked at all the implications of what it is trying to do. In dealing with a highly atypical set of cases, all of our jurisprudence in Canada at the Supreme Court level is based upon suffers of ALS who, on that bell curve of different ways in which people can die, either fully in charge as ALS sufferers are of their wills and their minds but not of their bodies or, at the other extreme, like Alzheimer's sufferers perhaps in reasonable physical health but not in possession of their faculties, and everybody in between. We have used that set of cases that have come before us because that is the way the court system works. Only the mentally capable can get their cases to the court and the court has generalized in a way that leads, potentially, into a hasty reaction that could lead to a principle being introduced into our law which may have, as Dicey says, unfathomable consequences.
I ask us all to move very cautiously and to seriously consider the possibility of amendments to this legislation in the coming weeks, as we go into committee.