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:

Wednesday, July 8, 2009

Prevention is the real cure

I came upon an interesting news item last week, on a day when I'd been thinking about the 'diabesity' epidemic rolling across North America and the absence of any new public health initiatives targetting this reversible 'lifestyle' disease.

"Spending on heart drugs growing fast" was the headline. A new study revealed that spending on cardiovascular drugs to prevent and treat heart attacks and strokes had jumped 200% between 1996 and 2006! Statins, a class of drug routinely prescribed to lower cholesterol, now account for 40% of the over $5-billion spent yearly on heart medications.

Prescription drug spending, by the way, is the fastest rising component of our public healthcare spending, and has been for a long time. Healthcare spending is increasingly an issue in politics, especially for parties of the right like the B.C. Liberals, who tell us we can't afford to fund the system we have today into the future.

The principal causes of high cholesterol are the same culprits behind the shocking rise in type two diabetes, which snares over 20,000 BCers every year: poor diet and physical inactivity. We just eat way too much junk food, sugar and salt, and sit too long on our butts distracted by electronics rather than moving about.

Our public policy response to date is typical - we 'medicalize' the syndrome resulting from poor lifestyle choices and absorb the impact via rising healthcare costs. But we don't intervene to increase activity levels and improve dietary choices, which would effectively reduce the amount of illness showing up and over time decrease sickness spending.

Doctors are trained to issue drug prescriptions for the syndromes that precede illness, like high cholesterol. In a well-intentioned way they're trying to prevent incidents, like strokes, that cripple people for life. But these drugs enable the poor lifestyle choices to continue and healthcare walks blindly past prevention, its natural power tool. And doctors rarely prescribe more exercise and better diet.

Meanwhile, politicians of all stripes prattle on about soaring costs - whether from the perspective that we cannot afford to keep paying, or from the perspective we must find the way to keep paying. Either way, no one proposes effective interventions that would change lives and reduce the incidence of disease.

This is a curious conundrum. Take Type Two Diabetes for example - over 220,000 in BC live with TTD and its complications; more than 20,000 are added annually, and costs rise by about $75-million a year for this preventable lifestyle disease alone. Obviously this isn't sustainable, certainly not in times when revenues to the Crown evaporate due to economic recession.

We value our public healthcare system because it's there when we need it, without regard for our ability to personally pay. That's important, because sooner or later 'events' require interventions in a life to preserve and extend it.

But our healthcare providers are focussed on sickness cure, stabilizing individual lives by heroic interventions. They rarely if ever formulate plans to intervene to prevent illness from ever happening.

And yet, almost all the advances in the life expectancy of individuals have come from well-designed public health initiatives - from clean drinking water to smoking cessation. Drugs and heroic interventions still save those not protected by preventive measures, but the big gains come from prevention.

We're seeing massive growth of lifestyle diseases due to identifiable factors: eg, industrial fast foods and sedentary living. These are reversible if society, via politics, takes steps to reshape the environmental conditions that cause them.

Americans today consume on average 300 calories per day more than they did 20 years ago. If eating one additional jellybean per day adds a pound a year (or ten in a decade!), think what 300 calories a day do to manufacture obesity and predispose inactivity!

The goal should be to return the vast majority of us to a daily balance, where calories 'in' equate to energy 'out', rather than posting a continuing surplus. How we do that means looking to underlying conditions, like how our communities and the roads linking our neighbourhoods to work, school and services are designed. Or looking at the way industrial foods are formulated, using too much sugar, salt, fats and carbs, and taking steps to reduce these ingredients.

Interventions at this scale - to make daily walking, for example, more convenient and attractive, or daily diet more nutritious and less toxic - will over time reduce the incidence of 'metabolic syndrome', which precedes lifestyle diseases.

It's absolutely true that we need a pool of money to physically rejig our living spaces to predispose more exercise - but a lot of that money is already collected and misspent on the wrong priorities. Think of all the fuel taxes collected at the pump for vehicle travel - why isn't some of that earmarked for the physical redesign of our cities? What about the feds grabbing ten cents a litre plus GST - why shouldn't that be used to improve community design, promote active transport, and reduce healthcare costs over time?

Many such public health initiatives will pay for themselves over time, because they prevent illness and debility we'd otherwise pay for under health and other social programs. They also keep people working and families whole.

My blood boils when I read about escalating healthcare costs and then hear politicians rabbiting on about whether we can or can't afford to pay. How about focussing on interventions that reduce the incidence of illness - try that tack for a while instead of indulging your political ADD.

Say, if you don't have any ideas of your own, just give me a call. I and a couple of friends can generate a half dozen effective interventions pronto. Go ahead, call my bluff!

Tuesday, June 30, 2009

Thoreau's Relevance

'None are so old as those who have outlived enthusiasm.'