Ramsey Talks

Many people tell me how lucky I am that my book, A Good Death is so timely. I think it is only fair to give credit where it is due—to Stephen Harper who ignored the Supreme Court ruling in Carter and then called the longest election campaign in modern history.  I’d also like to thank Justin Trudeau.  His government’s hugely problematic Bill C-14 will keep right to die and my book, top of mind, for many months.

But let’s go back for a moment to Svend Robinson —remember him?  He’s the NDP politician who was with Sue Rodriguez when she died in 1994.  Robinson, one of the pioneers of the Right to Die movement, has always said that the people are ahead of the politicians when it comes to physician-assisted dying.   Public opinion polls have consistently supported Robinson’s view, so has the growing membership in advocacy groups such as Dying with Dignity.

In the early 1990s, the idea of asking a doctor to help you die was weird.  Rodriguez put a human face on a terrible disease—ALS—and made a powerful argument for a patient’s right to choose.  She was youthful, charismatic and the mother of a nine-year-old son.  Who could not be moved by her plight?

Four of the nine judges on the Supreme Court agreed with her.  The rest thought it should be Parliament not the courts that changed the law.  No government has voluntarily introduced legislation, so now we know that the Courts, as well as the people, are ahead of the politicians.

More than 20 years after Sue Rodriguez lost her challenge for a doctor’s help in ending a life that had become intolerable, the Supreme Court revisited the Criminal Code prohibitions against physician assisted death.  In an elegant, eloquent and unanimous decision in February, 2015, the Court defined the conditions under which suffering patients could ask for help.  The Harper government failed to act, and tonight, as we meet, the Trudeau government has passed a deeply flawed medical aid in dying bill.  It may well founder in the Senate, but if the bill does become law without extensive amendments, it will certainly provoke Charter challenges.

As an aside, let me tell you that I knew we were in trouble when Justice Minister Jody Wilson-Raybould, after tabling Bill C-14 in the House on April 14th, said this bill would help people through the dying process.  As the Supreme Court pointed out it was SUFFERING that needed to be alleviated, not dying.

We are here tonight to talk about how to have a good death.  That was the question I asked myself when I started researching and writing my book, A Good Death, about two years ago.  As a journalist, I had morphed from reporting on arts and culture to writing obituaries so I could expand my subject range.   How many times can you interview Margaret Atwood, after all?

What I learned, aside from the fact that I continued to pester Margaret Atwood several times a week because there isn’t anything or anybody she hasn’t commented on in the last 50 years, is that obituaries are about life, not death.  Death is only the precipitating incident for putting a life in context.  What I also learned was that people were dying in different ways and beginning to whisper about it.

What made people like Kay Carter, Gloria Taylor, Ruth Goodman, Gillian Bennett, Cindy Cowan, Kim Teske and many others willing to stare down death and talk publicly about their choices, rather than quietly succumb to the inevitable?  That’s what sparked my interest:  The infinite variety of lives and choices and how individuals and their families responded.  I respect the principle of doctor/patient confidentiality, but nobody can convince me that end of life decisions should be made in isolation.  Our choices about how we live and how we die have consequences. We need to keep that in mind.

The world will carry on if BillC-14 becomes law because provincial and territorial regulatory bodies have come up with their own protocols.  Standards will vary, there will be no national oversight body, no easy way of collecting quantifiable and comparable statistics.  Those of us with connections and who live in urban areas with a sophisticated range of services should be fine.  What about those who aren’t so lucky in who they know and where they live? Those are the vulnerable, in my view.

Remember that it was only this year that the government of PEI said women should not have to travel outside the province to have an abortion.  My advice is to ask your primary doctor his or her views on Medical Aid in Dying now, while you are healthy.  Last fall I visited family doctor Erika Preisig at her assisted death clinic outside Basel in Switzerland.  How did your patients react when they learned you helped patients die, I asked her?  Were they afraid? Did they flee to other doctors?  Absolutely not, she told me.  My practice swelled with people came to me as regular patients because they feared their own doctors wouldn’t help them die if their suffering became intolerable.

There have always been doctors who would secretly help suffering patients die. George V, King of England was dying from a chest infection and emphysema when his doctor, Lord Dawson, despatched him with an injection of cocaine and morphine early in 1936.  Dawson, was moved by the king’s distress, his family’s anxiety and, if truth be told, optics.  He wanted the king to die in time for a dignified headline in The Times, rather than a vulgar announcement in an afternoon tabloid.

Yet, that same year, Dawson rose in the House of Lords to argue against a bill proposing the legalization of euthanasia.  He wanted the practice kept tightly in the hands and hearts of doctors—not patients.

And that is largely what the debate continues to be about:  Who controls dying—doctors or patients?  That is a key issue as autonomy rights for patients have burgeoned under the Charter, and countries elsewhere have introduced some form of physician-assisted dying.   While I was researching A Good Death, I asked myself, Why the Netherlands, Why Oregon, Why Quebec.  Physician assisted dying took root in countries, states and provinces that are secular, democratic, progressive and tolerant.  I’m not going to go into all the details, but let me spend a few minutes talking about the Netherlands.

In A Good Death I ask why are the Dutch so tolerant, a tradition that goes back at least as far as Erasmus of Rotterdam, the 15th century Humanist scholar and theologian.  He was a reformer, who was very conscious of the Catholic church’s excesses, but he was much more moderate than the German theologian Martin Luther.  And that seems to be the Dutch way, figuring out how to accommodate differing views.

Even before Erasmus, geography played its part.  Living below sea level meant that survival depended on maintaining the dykes that held back the ocean.  Whenever there was a breach, everybody had to work together despite religious differences, family feuds or business rivalries.  Is it any wonder that Peter, the boy who saved the country because he stuck his thumb in the dyke to keep the sea from rushing in, is a foundational legend?

The Dutch medical system provides universal coverage so there is no financial incentive to persuade Granny that she is tired of living.  As well, there is a strong tradition of family doctors caring for several generations of the same family in their homes. Doctors know their patients and their families.  (Of course this is changing, but I’m talking a generation ago.)

Like Lord Dawson, doctors often helped suffering patients die.  Unlike Lord Dawson however, they admitted what they were doing and reported their actions to the authorities, arguing a defence of necessity.  Yes, I helped my patient die, but the alternative was to do nothing for a patient in agony.  That I could not in conscience do.

The medical associations and individual doctors supported their colleagues and gradually a series of due care criteria developed under which doctors would not be prosecuted.  This went on for 30 years before the Netherlands passed its euthanasia law in 2002.

Quebec, which had undergone a seismic cultural change during the quiet revolution in the 1960s, also had a doctor led movement in favour of euthanasia.  Let us not forget that it was in Quebec that Dr. Henry Morgentaler led the crusade for abortion rights.  When he was charged and prosecuted, he also used the defence of necessity. No jury convicted him.  The Court of Appeal did, overturning his acquittal and substituting a conviction instead—a ghastly breach of the jury system.

The move to enact medical aid in dying in Quebec began with a discussion paper made public by the provincial College of Physicians and Surgeons in 2009.  It is hard to imagine such an initiative emanating from doctors in other parts of the country—and that is another topic worth discussing—why are so many doctors in this country against physician-assisted dying?

I hope we’ll talk about that reluctance tonight, but let’s go back to Quebec for a moment.   The report from the provincial college of physicians and surgeons was seized by a rookie politician named Veronique Hivon, who had watched people in her own family die protracted and agonizing deaths.  As a backbencher, Hivon proposed the establishment of an all party committee to study the issue—much the way that Justin Trudeau, as the leader of the third party in the House of Commons, proposed an all party committee to study the Carter decision in February, 2015.  The difference is that the National Assembly agreed and the House of Commons refused.  Think where we might be today if the House had acted more swiftly to respond to the Carter ruling.

Let me remind you that Quebec passed its medical aid in dying bill in June 2014, six months before the Carter decision was handed down at the Supreme Court of Canada.   In the rest of Canada though, the struggle for the right to die was led not by doctors, but by brave individuals like Sue Rodriguez, Gloria Taylor and Kay Carter. These women defied the law in monumental challenges in British Columbia that twice ended up in the Supreme Court of Canada.  There is a lot more to say about the Rodriguez and Carter challenges, palliative care, the conscientious objections of publicly funded institutions and individual choice and responsibility—and believe me I do in, A Good Death.   I also talk about an underground death movement in Canada, which is what happens when suffering people do not have access to physician-assisted death.  They endure horrible ends, or they resort to violence, try to import drugs on the Internet, starve and dehydrate themselves, become death tourists to Switzerland if they can afford it, or they seek the help of people like the late John Hofsess, best known today for helping poet Al Purdy die.

Individual lives matter to patients and their families. Watching somebody you love suffer or die an agonizing death is life altering. That’s something I have learned in writing about death.   Another is that the catch phrase, “protecting the vulnerable,” so beloved by the Liberal Government, is little more than a new way of extolling the “sanctity of life” argument that reigned supreme in the days of Sue Rodriguez.

Who are the vulnerable who are in need of protection?  Is it Kim Teske who had inherited the Huntington’s gene?  Kay Carter, who was immobilized by agonizing spinal stenosis?  Before the vote on Bill C-14, Minister of Justice, Jody Wilson Raybould suggested that a vulnerable person is “Somebody who has been recently disabled.”   Should that person, she asked rhetorically, have access to medical assistance in dying? How many recently disabled people are asking for physician-assisted deaths?  And of that number how many would qualify since the Carter criteria clearly states suffering has to be enduring, irremediable and intractable.  That doesn’t sound like recent to me.

So, who are the vulnerable people that Wilson-Raybould, and her colleague Jane Philpott, the Minister of Health, are trying to protect?  Would the vulnerable include Joe Arvay, the paraplegic constitutional lawyer who argued the Carter case at the Supreme Court?  Or Manitoba MPP Steven Fletcher, the quadriplegic politician, who as a Conservative backbencher introduced two right-to-die bills in the House of Commons?

The suggestion that people like Arvay and Fletcher aren’t competent to make their own life and death decisions is insulting and infantilizing.  Sometimes I wonder if Wilson-Raybould and Philpott are even thinking about patients when they talk about protecting the vulnerable.

Let me conclude by reiterating:  if we want a say in how we die—our final human right—it is up to us to make our choices known.  We have to take responsibility. That means thinking about end of life decisions and talking about our wishes and our fears with our families, our doctors, our lawyers, and especially our politicians—after all they are OUR elected representatives.