Columnists

Malcolm Buchanan
The right to die with dignity

| November 13, 2012
The right to die with dignity

The debate over the right of a mentally competent adult with a terminal illness to have the choice and right to die with dignity is a growing societal issue in Canada.

Suicide was decriminalized in Canada in 1974 but counselling or assisting suicide continues to be an offence under Section 24 of the Canadian Criminal Code.

There is mounting evidence that shows the majority of Canadians support physician-assisted suicide. Recent opinion polls are one indication of that. The Congress of Union Retirees of Canada (CURC) unanimously passed a resolution at its 2011 convention supporting death with dignity.

The morally charged debate over assisted suicide was first thrust into the forefront 19 years ago when Sue Rodriguez sought help to end her suffering from the degenerative disease amyotrophic lateral sclerosis (ALS). ALS, or Lou Gehrig’s disease, is an incurable illness that gradually destroys bodily functions and causes an agonizing slow death. Rodriguez, who lived in Victoria, B.C., fought to have a legal right to assisted suicide with the help of a physician. She twice took her case to the Supreme Court of Canada but lost both battles. On September 30, 1993, the Court, in what would become a landmark decision, held 5-4 against her. According to an article in The Globe and Mail, one of the reasons given was that the Court did not want to preempt a national debate it felt belonged first in Parliament.   

In November 2005, a British Columbia court found 73-year-old Evelyn Martens not guilty of helping two seriously ill women kill themselves.

In January 2006, a Montreal court sentenced Marielle Houle to three years probation for assisting her ailing son who was struggling with multiple sclerosis to commit suicide.

In September 2010, Laurent Rouleau, who suffered with multiple sclerosis and was in rapid decline, died from two bullet wounds to his gut.

In 2009, Lee Carter and her husband escorted Lee’s mother Kathleen to Switzerland to die with the help of a doctor. Kathleen Carter was suffering from degenerative spinal stenosis.

In 2011, Gloria Taylor, a British Columbia women who suffered from ALS, and others, including Lee Carter, Hollis Johnson, Dr. William Schichet and the British Columbia Civil Liberties Association, filed a death with dignity lawsuit before the B.C. Supreme Court.

The Court ruled in June that the Criminal Court provisions that prohibit doctors from helping their patients commit suicide are unconstitutional. The Court went on to say that the Criminal Code provisions discriminate against people who are too ill to take their own lives. The Court gave Parliament a year "to take whatever steps it sees fit to draft and consider legislation." 

Gloria Taylor died in October.  

The federal government has filed an appeal to the B.C. Court of Appeal. The case is scheduled to be heard in March of next year. 

An editorial in The Globe and Mail on September 12, 2011, entitled "Autonomy in death, with safeguards," stated:

"The government should address the issue head-on, instead of leaving it to expensive, time-consuming and ultimately inconclusive legal battles. Legislators should accept assisted suicide as an option of last resort, and frame its legalization narrowly, so that safeguards are in place to prevent abuse, and to ensure that euthanasia is restricted to all but the most extreme cases."

This past spring the Quebec Dying with Dignity Commission, an all-party group drawn from the National Assembly, issued a comprehensive report that recommended that some dying patients should have the right, under strict conditions, to request medical help to die. The report also recommended that doctors who help a terminally ill patient die by suicide not be charged criminally.

Canadians can look to other countries for some guidance on how to deal with the issues around death with dignity. Belgium, Switzerland and the Netherlands have death with dignity legislation. So does the U.S. state of Oregon.

The Dutch law offers a six-part test, which must be met for a physician-assisted suicide to be legal. The patient's request must be voluntary, must demonstrate a lasting desire to die, and their suffering must be unbearable. The attending physician must assist the patient to weigh the alternatives, must consult with another doctor and ensure that there is no chance of recovery. And a report must be filed with the coroner. 

In Oregon, two physicians have to confirm that the patient is terminally ill and that judgment is unimpaired. Moreover, the patient must be aware of all of options, including pain management and palliative care. A patient must also persist in the request for at least 15 days and the voluntary nature of the patient's request must be confirmed by two individuals who are neither family nor primary caregivers. 

The Congress of Union Retirees of Canada adopted the following resolution at its 10th Constitutional Convention in October 2011:

Resolution No. 28 - Death With Dignity

CURC supports legislation to permit physician-assisted suicide for consenting adults who are terminally ill.

Because terminally ill individuals should have the right to choose how much suffering they wish to endure;

Because the major benefactors of prolonging life for the terminally ill are pharmaceutical companies; and

Because every individual deserves the dignity of choice.

The Congress of Union Retirees of Canada believes the Canadian Criminal Code should be amended to define a legal doctor-assisted death, with rigorous safeguards to prevent abuse, and that euthanasia should be restricted to all but the most extreme cases.

In Gloria Taylor's affidavit filed with the B.C. Supreme Court, she said: "As Sue Rodriguez asked before me, whose life is it anyway?"

Retiree Matters is a monthly column written by members of the Congress of Union Retirees of Canada (CURC) that explores issues relevant to retirees, senior citizens, their families and their communities. CURC acts as an advocacy organization to ensure that the concerns of union retirees and senior citizens are heard throughout Canada.

Comments

Though the commentary has internal logic and consistency, it unfortunately shows the superficial analysis and factual inaccuracies that plague this debate.

Bioethicists, lawyers, politicians and pundits who discuss assisted suicide usually have little experience and less knowledge of the issues involved.  The perspective that is never heard, but is the most fully informed, is that of people living with disabilities who work against discrimination.  Disability activists have worked actively against euthanasia and assisted suicide for 30 years.  We bring to the table in-depth knowledge of the health care and benefit systems, as well as the and independent living and civil rights models.

Not only do many disability rights activists face life-and-death situations on a regular basis, we also are the population most directly affected by assisted suicide and euthanasia.  All of the people Mr. Buchanan mentioned in his essay did not have terminal illnesses, but rather chronic disabilities.  Most people live with Multiple Sclerosis for decades, and ALS is only fatal insofar as the person refuses to use a ventilator.

This confusion between disability and terminal illness is a significant problem in the debate.  Assisted suicide and euthanasia are often presented as options “only for people with terminal illness.”  Those of us with disabilities are patted on the head and told we should not worry, it’s not about us.  However the reality is that assisted suicide and euthanasia are disability rights issues.  Virtually everyone diagnosed with a terminal illness has developed a physical or mental impairment that substantially limits one or more major life activities.  (This is the definition of disability from the Americans with Disabilities Act.).  That person with a terminal illness has also just developed a disabling condition, and is vulnerable to the negative messages about disability that pervade our society.

In addition, reports from jurisdictions where assisted suicide is legal indicate the reasons people give for wanting to die have to do with disability rather than death.  For example, in Oregon, 91% of people requesting assisted suicide cite loss of autonomy among their reasons for wanting to die; 87% say inability to do activities they enjoyed, 85% mention “loss of dignity,” and 57% say loss of control of bodily functions.  Only 22% cite pain or fear of pain as reasons for wanting to die.  These reasons have to do with disability, not imminent death.

The key to understanding assisted suicide as a disability rights issue is that society responds differently to people with and without disabilities who want to kill themselves.  If a non-disabled person says she wants to die, she has nothing to live for, her friends or family have abandoned her, she’s lost a job or a spouse or has to move out of her home, society will intercede – even to the point of placing her against her will in a psychiatric facility – to prevent her suicide.  However a person with a disability who says the exact same thing, will likely be told his desire is rational “given his condition.”   That means that he probably won’t be evaluated for psychiatric treatment and services to prevent suicide, but for competency to be eligible for assisted suicide.  If he is deemed competent (even in the presence of depression) his suicide attempt – unlike more than 90% among the general population – is nearly guaranteed to succeed.

The reason for this difference is contained in the common litany of loaded words and phrases associated with disability found in Mr. Buchanan’s commentary; “agonizing slow death,” “suffered with multiple sclerosis,” etc., etc.   Disability rights activists have worked for decades to remove such language from the vocabulary of the non-disabled public in describing our lives, but it persists because people without disabilities continue to fear what we represent.  We draw back the veil to show the illusion that is individual autonomy. 

In fact, most physical pain (“agony” “Suffering”) can be managed, and techniques for managing other symptoms associated with disability and dying are improving quickly.  The value-laden words come mostly from what is sometimes called “existential suffering” or more accurately “inability to adapt to a new situation and get on with your life.”

Disability rights activist Rhonda Wiebe puts it this way:  When a parent loses a child, the loss is devastating, life-altering.  The person faces reminders every day of the loss, and it is a hole that will never be filled.  Yet as a society we don’t encourage such parents to go ahead and commit suicide.  So why do we encourage people who have lost the ability to walk or see or hear to kill themselves?

What’s the difference between the grieving parent and the person with MS?  It’s the messages about the value of life with a disability that are reflected in public policies that isolate and limit people with disabilities.  A lack of home-care options forces people with disabilities into institutional settings where a mass-production model of care dehumanizes both residents and staff.  Lack of access in housing, businesses, infrastructure, the public sphere and transportation keep people with disabilities isolated in their homes and (perhaps more importantly) out of public view.  Lack of sensitivity and accessibility in health care settings hinders preventative care and prompt diagnosis, exacerbating illnesses and disabling conditions.   It’s these barriers, not the physical conditions we live with, that reduce our quality of life.

Mr. Buchanan cites “mounting evidence that shows the majority of Canadians support physician-assisted suicide.” as a reason to change the law.  I would just point out that there’s a reason we don’t govern by public opinion.  If we did, women’s suffrage would have been delayed by decades, and lynching might still be a public sport in the American south.

In bemoaning the lack of legislative action on the issue of assisted suicide, Mr. Buchanan fails to mention the nine separate bills that have been considered in the federal houses of Parliament since the Rodriguez case 20 years ago.  The latest, bill C. 384, was defeated in 2010 by a vote of 228 to 59.  That defeat followed the pattern in 23 states in the U.S. where such bills have been defeated more than 100 times.  A bill is introduced to broad support.  Then the disability rights community, medical and palliative care professionals and others explain the real impact of such laws, and they are defeated.  The legislative process is effective in that, though there may be die-hards on both sides, a majority of lawmakers listen to the arguments on both sides, and come to a reasoned decision.

Mr. Buchanan refers favorably to the work of Québec’s Commission on the question of dying with dignity.  It’s worth noting that a) the intent of Québec’s national assembly – to establish a means for allowing some sort of assisted death – was clear in the Commission’s mandate, and b) the Commission did everything in its power to NOT hear from disability rights advocates on the issue.

Finally the commentary lays out a somewhat inaccurate version of the safeguards that are supposed to prevent abuse under such laws.  Though official reports tend to hide or obfuscate such cases, life-ending drugs are administered without explicit request at alarming rates in the Netherlands, and media reports are the only source of information about failures in the Oregon law.  An example of this phenomenon is the fact that deaths under the Oregon program are not counted as suicides, but as caused by the underlying disease or condition.

Other problems include inaccurate diagnoses of terminal conditions, emotional and financial pressure that can precipitate a “choice” to request assisted suicide, and the fact that an heir can witness the request.  (Mr. Buchanan’s assertion that “the patient’s request must be confirmed by two individuals who are neither family nor primary caregivers” is incorrect.  See ORS 127.810 s.2.02.(2)).  In fact, an heir or interested party can accompany a person to make the request, bring a friend to co-witness the request, pick up the prescription, and administer the drug in the home with no one the wiser; if the person struggled, who would know? 

People deemed ineligible for assisted suicide by one doctor can and do find another doctor who will ask a colleague to verify his prognosis, and write the prescription.  In fact, only a small group of doctors seem to be authorizing assisted suicides, and Compassion & Choices has “helped” more than 70% of Oregonians who have used the program.  The Oregon statute does a better job of protecting doctors from liability than elders and people with disabilities from abuse and exploitation.

In the assisted suicide debate, disability rights activists are caught between our traditional progressive allies on one side, who seem unwilling to look beyond the superficial assurances of “choice” to the economic, political and sociological underpinnings of euthanasia and assisted suicide, and the religious and conservatives on the other side, who while agreeing with us on assisted suicide, are slashing services and trampling civil rights we need to have real equality and self-determination.  Both sides are well-funded and well-organized; the disability rights movement is small and bleeding from 10,000 budget cuts.

If someone dies in pain, it’s not the fault of medical science, it’s a problem with medical practice.  If someone lives in isolation and poverty, it’s not the fault of the individual, it’s the society that has failed.  What does it say about our society that we would let people sacrifice themselves on the alter of disability oppression instead of ensuring that everyone has effective palliative care and the supports they need for full equality, acceptance and integration?

 

I think most people who argue for a so-called ‘right to die’ would agree that suicide is morally permissible only when it is a fully informed, rational decision. But the question is: is a person contemplating suicide capable of making a rational decision? I don't know.

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