AIDS and Medical Aid in Dying - are there lessons to be learned?

Canadians debate currently where to draw the line in the sand in terms of eligibility criteria for medical aid in dying. The federal government is determined to push thru a bill that is uncontroversially unconstitutional by limiting access to terminally ill patients.

Today the Globe and Mail (a paper that supports our government's restrictive approach to medical aid in dying) published an unusually thoughtful commentary by Konrad Yakabuski in support (you won't be surprised to hear) of said restrictive approach.

Yakabuski and I have something in common, something important. We both lived thru the early years of the HIV/AIDS epidemic, we both lost loved ones to the disease. Yakabuski mentions that his brother and several friends of his died of the ravages of AIDS, 'with dignity, the old-fashioned way'. Yakakuski's main point (a very reasonable point) is that eventually treatments for HIV infection came about that permit HIV infected individuals today to live basically healthy lives. If medical aid in dying would have been available to them, some HIV infected patients may have chosen to end their lives prematurely, however, if they had decided to stick it out, they might have been able to hang on for long enough to benefit from the life preserving drug regimes that exist today. He then makes the same claim about anti-depressants (arguably he is terribly mistaken on that frontier, but that's unimportant for the purpose of his broader point, it doesn't rely on him being right on that count).

Well, I'm a gay man who has seen very many of his friends succumb to HIV infection in the same years that Yakabuski writes about, and I disagree entirely with his argument and his policy recommendations. You won't be able to see this response in the Globe and Mail, unfortunately, because the paper has been reduced to a propaganda vehicle for a restrictive assisted dying regime.

There has been some debate both among medical ethics people, but certainly also among HIV infected people about medical aid in dying, in the 1980s. One leading bioethics journal, the Hastings Center Report, published many years back a piece by my friend, the late Michael Callen, entitled 'If I have AIDS, then let me die now.' Michael had, of course, no intention whatsoever, to die on AIDS. In fact, years after he published his commentary he wrote a book called Surviving AIDS. Eventually he succumbed to the disease, shortly before life-preserving treatment regimes came onto the market. I have lost far too many friends like Michael.

But I digress, let's return to Yakabuski's commentary. Why would educated AIDS activists, like Michael, have written a commentary for a mainstream medical ethics journal in which they argued that they should be able to receive medical aid in dying when they thought their time had come? Simply put, it was about self-determination. Something maligned by Canadian anti-choice activists as 'autonomy fundamentalism' (not Yakabuski's words!). It was a choice for Michael to make for himself, not for me, not for government, it was his call to make.

The problem with timelines in this context is that we can never know whether, if at all, and when a successful treatment for a particular ailment comes onto the market. Yakabuski briefly mentions the horrible deterioration in health and quality of life HIV infected people in those days experienced. It was worse than that, they had seen friends and lovers wither away, they knew what was coming their way. It's all nice and well to describe this withering away as 'dignified and old-fashioned', but frankly, for many of these young people who died during those years there was nothing dignified about their dying, and no amount of hand-holding and caring would have made their disintegrating lives any more dignified. I am deeply troubled about the euphemisms Yakabuski deploys to describe what was actually happening in our community. I also have no doubt that that is how he subjectively experienced or remembers his brother's death. It is not an experience that is representative of how dying of HIV was experienced by many, if not most, of those who died in those years.

The question then, surely, is whether these patients were entitled to call it a day when they decided they had enough, or whether the state had any right (as the Liberal government's legislation proposes) to force them to stick around and deny them access to medical aid in dying on the ground that some drug might come about. My answer: Of course they were entitled to make those choices and see those choices respected and supported. That the state would think it has a role to play in forcing such patients to stick around no matter what, or commit suicide by some gruesome means, is just mind boggling.

HIV is different to depression, of course, in that it was actually an illness where death would have been reasonably foreseeable, so HIV patients arguably would have met the standard set out in the restrictive government draft legislation of bill C14.

I have published a year ago with Suzanne van de Vathorst a lengthy piece on treatment resistant depression and medical aid in dying. May be take a minute or two to read it. It's available here. The same link will also take you to published responses, including one or two making Yakabuski's case, as well as our considered response to those arguments. The article also supplies hard data on the actual large scale failure of available treatment modalities that Yakabuski glosses over in his piece. The argument here is the same as above, if a patient is competent at the time of decision-making and he or she does not consider their lives worth living, and available treatment options have been exhausted, we as a society have no right whatsoever to force such people to stick around in the hope that some treatment might come about during their lifetime. It's a decision only such patients can make for themselves. Whatever they decide, they deserve our support.

State of Affairs: Canada's Medical Aid in Dying Legislation

I have explained on this blog (just see the entry below) how Canada's Liberal government's draft legislation aims to deprive Canadians who are not terminally ill, but who are eligible for medical aid in dying, of their Charter rights. A fairly large number of constitutional law experts, including the lead counsel in the Carter case that led to the Supreme Court judgment, warned the federal government that its legislation would be contested in the courts and would eventually be thrown out by the Supreme Court. Government apparently thought it could thumb its nose at the judgement by redefining clear Supreme Court of Canada criteria and pretending that black is kinda white. Since then two Canadian courts have heard cases where competent patients who are not terminally ill appealed to receive medical aid in dying. Government lawyers in both cases were sent packing and told in no uncertain terms that their insistence on the eligibility standards expressed in the draft legislation is unacceptable because these standards are unconstitutional

Yesterday the Canadian Senate weighed in and removed the terminal illness threshold the Liberals were so keen on, precisely because the majority of Senators realised that the legislation proposed by the federal government is unconstitutional. Our Justice Minister meanwhile insists that her (unconstitutional) 'balance' is just right, and waffles a bit about not further defined 'vulnerable' people that would be best 'protected' if her government's proposed restrictive regime was passed by the Senate. It's only mildly amusing that she deploys the same vacuous rhetoric here that the previous Conservative government deployed.

The question is why the Liberals would engage in that sort of thing. There are persistent rumours that there are a fairly large number of religious conservatives in the Liberal caucus who care more about their religious beliefs then about Canadians' constitutional rights. This in turn forced the Trudeau government to try to legislate hard-right on this issue, to the dismay of virtually every relevant legal expert in the country. What does surprise is that these folks seem to think that their personal beliefs somehow trump their obligation to legislate in line with our Charter of Rights and Freedoms and in line with the criteria the Supreme Court spelled out.

How Canada's new Liberal government plans to deprive Canadians of their Charter rights

It is becoming clearer by the day that our newly elected federal government has an insatiable appetite for talking progressive while governing conservative. I suspect this will be our new normal until election time. The behaviour pattern is obvious. I doubt Mr Trudeau's feel-good activism on that frontier will carry the Liberals much longer. Canadians are catching on to them.

Anyhow, as a quick reminder, the Canadian Supreme Court declared that parts of the Criminal Code that criminalize assisted dying are unconstitutional.

Canada's Liberal government introduced its legislation on assisted dying in parliament.  It is being debated in committee today.

Here's the legislative draft proposal

A person has a grievous and irremediable medical condition if

(a) they have a serious and incurable illness, disease or disability;

(b) they are in an advanced state of irreversible decline in capability;

(c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and

(d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.

Compare that to the Supreme Court's criteria:

'‘competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.'

Ii is trivially true that 'd' in the legislative draft is too restrictive, given the criteria the Court has set. Terminal illness is not a defensible threshold condition for access. Patients do not have to be in an advanced state of irreversible decline in capability either. Excluding not terminally ill patients from access who meet the above mentioned Supreme Court criteria would clearly violate Canadians' Charter rights. 

Government released today its rationale for the proposed policy.  

Here we go,

Restricting access to only those individuals whose death is reasonably foreseeable allows them to choose a peaceful, medically assisted death where their medical circumstances are such that the dying process would otherwise be painful, distressing, frightening, prolonged or otherwise lacking dignity from their perspective. This approach respects autonomy during the passage to death, while otherwise prioritizing respect for human life and the equality of all people regardless of illness, disability or age. It also furthers the objective of suicide prevention and the protection of the vulnerable. Recognizing the complexity of the legal and social issues associated with medical assistance in dying, this approach strikes an appropriate balance between the competing rights, interests and values. 

It's plain for everyone to see that the Rationale is not actually a rationale as it does not explain at all why terminal illness is introduced as an eligibility threshold. 

The Justice department's briefing acknowledges the problem, it states,

This could impact the section 7 Charter rights of those who are suffering intolerably as a result of a serious and incurable condition, but whose natural death is not reasonably foreseeable. This could include individuals suffering only from a mental illness, and individuals with physical disabilities who lack the physical capacity to end their own lives. Persons with mental illness or disabilities would only have access to medical assistance in dying if they meet all of the eligibility criteria.

And yet, our government (lacking a rationale to actually respond to this concern), pushes ahead anyway. I trust you will savour the Catholic language introduced in the rationale, where government prioritizes 'respect for human life' over our Charter right to make decisions about our continuing existence based on competent, autonomous choice and our actual quality of life. Intractable human suffering is apparently of no concern to the Liberals. Go figure. Truly, this is legislation the Harper Conservatives could have drafted. 

Health Care - Not an Issue for Major Political Parties in Canada's Federal Election Campaigns

It's a somewhat surreal election campaign that is currently in full swing in Canada. It stays clear of issues of vital importance to Canada and Canadians. There we have a rapidly ageing population and really we need a national seniors strategy that accounts for that. One can nearly feel sorry for the Canadian Medical Association here. The association tried hard during the last few months to make this issue an issue in the current election campaign. It was rightly supported by sympathetic journalists such as the Globe and Mail's Andre Picard. Yet, for all those efforts, the issue gained no traction with any of the major parties. Our federal leaders' heads remain firmly planted deep in sand, with no effort made to look ahead and address major, dramatic challenges to our health care system. Instead we were treated to a good two weeks' worth of Mike Duffy and the usual corrupt shenanigans that are a hallmark of Prime Minister Harper's political operation.

I spoke yesterday to a journalist interviewing me on the state of federal and provincial planning with regard to the implementation of our Supreme Court's decision  on assisted dying. He asked why the political parties, in my estimation, haven't taken up this issue in their respective campaigns? He was puzzled that an issue that enjoys broad support among Canadians is ignored by the major political parties. What was I to say other than 'I don't get it either'. A new poll, released today, confirms what I told the journalist yesterday, it is not only the case that the vast majority of Canadians want to see the decriminalization of assisted dying, it is also the case that the vast majority of conservative party voters supports the decriminalization. 77% of Canadians generally support decriminalization and a whopping 67% of conservative party voters and 84% of NDP voters. This does beg the question why none of the mainstream parties have leveled with their supporters and the general voting public on how they would implement the Supreme Court judgment. I do still wonder why Prime Minister Harper appointed an advisory panel stacked with discredited anti-choice activists, given that the majority of his party's supporters is in favor of decriminalization. Why on earth would he stack his panel with folks known to be opposed to decriminalization? I sometimes wonder about the credit that is given to Mr Harper who is hailed as a master political tactician. His whole election campaign seems a shambles to me.