The importance of picking a vocabulary for dying

Posted on June 19, 2012 in Health Debates

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TheGlobeandMail.com – news/politics
Published Monday, Jun. 18 2012. Last updated Tuesday, Jun. 19 2012.   André Picard

In matters of life and death, words matter.

That is an important message that emerges from Friday’s B.C. Supreme Court decision that struck down the ban on …Well, on what exactly?

Gloria Taylor, who suffers from amyotrophic lateral sclerosis, won the right to end her life at the time of her choosing. Because of the physical limitations caused by ALS, the 64-year-old can get a physician to help by administering a death-hastening drug – the nuance that landed the case in court and on the front pages.

What do you call the right she won?

Physician-assisted suicide? Physician-enabled death? Physician-hastened death? Euthanasia? Voluntary euthanasia? Rational suicide? Suicide? Mercy killing? State-sanctioned murder? Death with dignity? And there are many more variations, each loaded with legal and moral baggage.

The language we choose tends to reflect where we stand on the underlying question of whether grievously and irremediably ill people should have the right to choose to end their lives rather than let an illness take its course.

Ultimately, the fundamental legal issue is choice: Do individuals have control over their bodies in death as in life?

There are obvious parallels with the abortion debate. The battle lines are similar, with civil libertarians at one end of the spectrum, religious fundamentalists at the other, and most people uncomfortably pragmatic in the middle, meaning they want choice to exist but hope they never have to exercise the choice themselves.

Those who are pro-choice use neutral language like consensual physician-assisted dying and describe their quest as ensuring death with dignity. Those who are anti-choice use more loaded terms like assisted suicide and euthanasia.

Suicide is an act of self-harm that is almost always a byproduct of mental illness like schizophrenia or severe depression. This is in no way comparable to hastening death via a methodical, sober process with a number of legal safeguards.

Calling medically assisted dying suicide is a lot like calling surgery a knife attack.

Euthanasia is similarly rife with negative implications. The word’s origin is found in the Greek eu, meaning good, and thanatos, meaning death, so it means a “quiet and easy death.” But the term was forever perverted by the Nazis who used euthanasia to describe some of their murderous atrocities.

This provides a good segue into discussing the greatest fear about legalizing (or more precisely, decriminalizing) physician-assisted dying – that it will throw open the door to abuse, to euthanasia of the frail, sick elderly and those with disabilities.

We already have a word for the practice: murder.

Physician-assisted death has to be consensual, and it is only appropriate in a limited number of cases, those of patients who are “grievously and irremediably ill.” (In everyday language we would say “terminally ill,” but that term is imprecise.)

In her ruling, Madam Justice Lynn Smith said Criminal Code provisions that prohibit assisted death violated Ms. Taylor’s constitutional right to “life, liberty and security of person.” Just as importantly, the judge noted that a complete prohibition is not the only way to ensure that grievously ill adults can make a decision to end their lives that is “fully informed, non-ambivalent and free of coercion or duress” – namely a carefully monitored system with established practices.

Currently, it is difficult for those who choose to end their lives to do so in a dignified manner. The political and legal climate encourages secrecy, isolation and underground practices. There are many families who harbour painful secrets because they fulfilled the final wish of a loved one.

The reality, too, is that there are plenty of physician-assisted deaths already. There is “withdrawing of potentially life-sustaining treatment” – also crudely called “unplugging a patient” – when patients with no hope of recovery are mercifully removed from respirators that are keeping them alive artificially.

Another common practice is “palliative sedation,” gradually jacking up the dose of pain medication to ease suffering, which usually leads to respiratory failure. Not to mention that many terminally ill patients refuse food and drink, essentially starving themselves to death, with the compassionate complicity of their care providers.

These practices are not wrong: quite the opposite. Optimal medical care, especially at end of life, is about relieving pain and suffering, not keeping someone nominally alive at all costs. Caring physicians should not be reduced to doing so in a nudge-nudge-wink-wink fashion.

Access to palliative care is abysmal. Fewer than one-third of Canadians who could benefit actually receive palliative or hospice care. Consensual physician-assisted death can, in some cases, be the ultimate act of palliation, but it is not a substitute.

On the contrary, the jurisdictions with the most liberal right-to-die laws have the best palliative care. That is because, in places like the Netherlands, Switzerland and Oregon, there has been a full and fruitful public discussion about the importance of a good death.

Too often, we see death as a failure of medicine and inflict all manner of so-called heroic interventions on patients who really need humane, palliative care and, in some instances, a helping hand in bringing an end to their suffering.

Death is part of the cycle of life. We should not fear it, but plan for it. That includes making our personal wishes explicit, with living wills and in frank discussions with our loved ones. We need legislation that facilitates this not only so some of us can die more hastily but so all of us can have the choice to die with dignity.

We need to give life to the language of death.

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