Monday, November 9, 2009

Dignified Goodbyes

We all have to die when our time comes, that much we know. What’s unknown is the ‘when’ and ‘how’ of it, especially the ‘how long’ of dying, until it actually happens. Unless of course we decide to take matters into our own hands and effect our own end, which we’re allowed to do.

Some lucky people get to die in their sleep, something most of us hope for. I had an aunt who’s said to have sighed gently and slipped away while sleeping. I much prefer that to the image of my mother’s last weeks in a hospital bed, ravaged by a terminal cancer that wouldn’t stop tormenting her poor body. Hers was an end that wasn’t kind and might have been spared.

If to be unaware of passing away is deemed by most a good death, next best would be choosing the moment in a manner that mimicked, so far as possible, a gentle way of passing. That’s a scenario not currently available to most of us, a situation many feel we need to change.

Choosing the moment of our own dying is a right under Canadian law, if only in the sense that taking your own life is not a criminal act. Counselling or trying to convince someone to commit suicide is a crime, and so it should be in my view. Death isn’t a choice to be urged or forced upon anyone.

However, assisting someone who wishes to end life is also currently a crime, in every circumstance, for doctors or anyone else. That’s where significant change is long overdue.

Individuals today have a right to take their own life, but no right to a gentle way of doing it. Society, via controlled substances legislation and the prohibition on doctors assisting, has put a lock on all the gentle ways of dying. Individuals are left with an array of ugly methods of ending their lives.
It’s perhaps not surprising that in the USA, where hand-guns abound, this is the principal way that people take themselves out. What a repulsive option for humane, caring individuals who only wish to end their suffering!

Here in less-well-armed Canada, males opt for hanging first by far, with firearms a distant second. Females overwhelmingly opt to poison themselves. Women it seems are less able to marshal the aggression to pull a trigger or risk the agony of hanging. No one should have to.

Clearly, restricting people to ugly, uncertain choices deters some, which is what the law seems to intend. Some may see this as good because they'd like the right of suicide removed entirely. I'm not one of them, and chances are you aren't either. We want to see the right to a dignified exit enshrined in law.

For many people, current law removes the option of choosing to end life without inflicting terrible distress on loved ones. For those with terminal illness, who may be forced to endure horrific pain, loss of control, and no quality of life, the prohibition on a compassionate end seems a form of violence itself - a death sentence preceeded by indefinite torment.

Victorians know this scenario intimately through the life of Saanich's Sue Rodriguez, victim of an incurable disease known as amyotrophic lateral sclerosis (ALS). As her muscles failed and she lost control of body functions, including swallowing and speech, she petitioned the courts to allow a doctor to help her die with dignity. Clearly she was unable to exercise her right to commit suicide because she was physically incapable of doing it herself.

While the Supreme Court of Canada came close to saying yes (a five-four decision) sadly the status quo prevailed. That was fifteen years ago and nothing has changed, except public opinion. Canadians overwhelmingly support physician-assisted suicide in defined circumstances, like terminal illness, with appropriate safeguards.

During B.C.'s 2007 Conversation on Health, physician-assisted dying was "a frequent topic of discussion related to end-of-life care". "Many participants are in favour of instituting a process to allow euthanasia or assisted suicide, suggesting this would allow people to die with dignity". The Legislature has so far taken no public position on assisted dying, despite the wishes of its citizens.

Some still believe it would be morally wrong to allow any access to a gentle, dignified way of dying. They feel any provision to enable people to die at a time of their own choosing would somehow see the elderly, the infirm and the disabled pressured into agreeing to take their own lives. Just how one leads to the other isn't stated, only that it's a 'slippery slope'. And this intense belief has tended to stymie any initiative to change the status quo.

But I think we're coming to a time of decision with regard to personal choice for a dignified ending of life. There are signs of an emerging resolve on the public's part to see the issue addressed, especially in defined situations like terminal illness. Here on the west coast, where Sue Rodriguez was a public figure, where neighouring Oregon's Dying with Dignity Law demonstrates how safeguards can work, there's strong sentiment in favour of change.

Many believe it's ethically wrong to force someone dying slowly in great pain to simply tough it out. Yes palliative care should always be available and still isn't, as should hospice, to enable those who can to hang on until disease runs its full course. But we must face what most doctors recognize: palliation of suffering may be ineffectual at the higher reaches of pain, and the agony of lost autonomy and dignity can lead people to want to go.

It's time we recognized individual choice in the matter and ensured a humane and compassionate way to exercise it.

Ask yourself, why shouldn't someone be allowed to go gently with dignity? Quelling suffering is a principal motivation of all medicine, all nursing, all palliative care. When care is no longer restorative and pain reaches unbearable levels, quelling suffering may actually mean ending life. Why shouldn't someone be allowed to make that choice without abandoning dignity?

Since 1997, Oregon has allowed individuals with a terminal illness and less than six months to live to choose their time of dying. The sky hasn't fallen, elders and the infirm aren't being set adrift on ice flows. Last year 88 people obtained a doctor's prescription for pento- or secobarbital sufficient to carry them off. A quarter didn't ever use the drug, the comfort of knowing they had an emergency exit being enough to see it through.

Eighty percent of those making the choice of assisted dying had terminal cancer. The reasons given for choosing to end their own life aren't surprising: loss of personal autonomy (95%), inability to participate in life (92%), and loss of personal dignity (92%).

Here's what Canadian ALS sufferer Virginie Bijon says of living with her terminal illness: "I keep track of the disease's progress by what I can no longer do - walk, feed myself, speak. My body is a prison." And: "I feel in prison in this useless body of mine, and the silence isolates me from those I love. I am scared for this last leg and I pray it will be short...I long for the end for my spirit will be free at last."

Virginie Bijon shouldn't be forced to dwell in prison. She isn't petitioning for the right to end her own life, but the suffering, fear and indignity of her situation argue strongly that she should have it. Anyone in her situation should have the right to a dignified ending. She may choose not to exercise it, but she should have it.

It matters to us as individuals, majoritarily, to have the right to a gentler end than gun violence, hanging, or under-the-sink chemicals. It needs to matter equally to our legislators, at every level. The time is nigh to modify the criminal code to make it legal for terminally ill people (at the very least) to have a dignified exit.

A 2007 Ipsos Reid poll showed 76% of Canadians supported changing criminal law to allow for physician-assisted dying. Last month an Environics poll, commissioned by those against assisted dying and invoking the possibility of pressure on the elderly and disabled to go, showed 61% of Canadians and 75% of Quebecers still approved of assisted dying despite concerns. Recently Quebec doctors came out 75% in favour of decriminalizing assistance in terminal cases. These polls point to a strong underlying concensus in favour of change that legislators should to pay attention to.

A private member's bill - C-384 - now before the House of Commons would legalize physician-assisted dying for the terminally ill, among other things. MP Francine Lalonde's bill proposes fully establishing rights to a dignified exit for people with unrelievable suffering, so confronts the more challenging angle of allowing nearly anyone to go when they wish.

This may give parliamentarians an excuse not to take the bill seriously, because it raises the stakes so high all at once. Legislators reluctant to discuss any right to die publicly may not rise easily to this debate.

However, there are recent signs of openness to getting this discussion out in the open at last. Conservative MP Stephen Fletcher, a C-4 quadriplegic who suffered traumatically after his disabling accident, wrote a National Post editorial entitled "Make life the first choice, but not the only choice." While he personally found a way through his living nightmare, he emerged with a strong belief that people should not be "forced to live in pain that is truly intolerable".

His key criterion is whether the prospect of a quality of life and level of dignity sufficient to sustain the will to live is attainable. If not, people should have a compassionate choice.

Stephen Fletcher's life is now bearable, yet he has a living will that directs euthanasia in certain circumstances. "Unfortunately, the euthanasia provisions in my living will may not be binding or enforceable, which is why I agree that changes should be considered to our current law".

"I do not want to be forced to live in a hell because the law does not take into account my 'unique' circumstances or because someone imposed their values on the meaning of life on me. Given the choice of existence without living or death, I would rather choose the latter and take my chances on the other side."

He concludes by saying he will abstain on Bill C-384 rather than vote against it, because while it "is flawed...I cannot vote against empowering Canadians to make deeply personal choices for themselves". Here is a brave and compassionate person advocating for personal choice in dying when pain becomes intolerable.

Another omen of change, from within the historically conservative ranks of medicine, is the recent position taken by the Quebec College of Physicians and Surgeons. The CMQ became the first medical body to urge that the criminal code be changed to allow doctors to take the lives of patients "facing imminent death".

The CMQ "embraces the point of view of the patient confronting imminent and inevitable death", who it believes should have the right to die without "undue suffering and with dignity". It clearly acknowledges that palliation cannot quell all suffering.

"We're saying death can be an appropriate type of care in certain circumstances".

Many believe it's time we had this debate in the open and feel that Francine Lalonde's Bill C-384 can be a catalyst for change. Canadians may not be ready yet to go the whole distance it proposes, but a progressive majority in the House could amend it to provide the option to the terminally ill forthwith. There's no coherent argument against enshrining this right.

The remaining provisions could be referred to an all-party parliamentary committee charged with consulting Canadians, reviewing provisions, and making recommendations to a future sitting of the House.

Canadians are, I believe, very interested in having this discussion. Bringing it out from under the blanket of silence thrown over assisted dying is long overdue. My own generation, the baby boomers, are having direct experience of protracted suffering with parents and friends. We want to see change, now, beginning with rights for the terminally ill.

Strange things can happen in a minority Parliament. Wouldn't it be a boon if something the public clearly wants done could be achieved by the majority in the House of Commons?

If you want to let your legislators know your views on physician-assisted dying, click on the attached finders and drop them a line.

Your Members of Parliament:

Your Members of the Legislative Assembly of British Columbia: