Good afternoon.
Thank you to the justice and human rights committee for inviting Dying With Dignity Canada to this hearing today.
We have been on the assisted dying file for well over 30 years. If anyone recognizes the historic moment that our country is now in, we certainly do. However, we are very concerned about Bill C-14 and its unjustified deviation from many of the core recommendations of the special joint parliamentary committee.
We are concerned that the government's definition of “grievous and irremediable” does not meet the minimum standards of Carter. If Carter is the floor for assisted dying, we're now in the basement. We are also particularly concerned that there is not a provision for advanced consent for people who have a diagnosis of a “grievous and irremediable” condition such as dementia or Huntington's.
While Dying With Dignity Canada's policies are informed by our physicians' advisory council, we're not doctors and we're not lawyers. We represent the 85% of Canadians who support the Carter decision and the 80% of Canadians who support advanced consent with a diagnosis. As such, our organization has a responsibility to discuss the vulnerable groups of people who will be left behind if Bill C-14 is not substantively amended. The people I will mention today are but a snapshot representation of the thousands of Canadians who will not be able to find comfort in Bill C-14 and who may have to go to court to establish their charter right to die.
The following is not an exhaustive list of concerns, but it does highlight some key exclusions.
The government's legislation redefines “grievous and irremediable” and introduces new terms, such as “incurable”, “advanced state of irreversible decline”, and “reasonably foreseeable”. These new terms will exclude people who have serious chronic medical conditions and will exclude people who are not imminently dying.
So who are we talking about? Who's going to be excluded?
This is Linda Jarrett. Linda was diagnosed at the age of 50 with secondary progressive multiple sclerosis. At 68, she can no longer walk, and the years ahead are deeply troubling for her. She does not want to stay in a 24/7 long-term care facility for what could be years on end. She wants choice and the comfort of knowing that she will be able to make a choice, if her condition and her suffering becomes too much to bear.
This is Ronald Phelps with his daughter Laura. He had a debilitating stroke that left him bedridden and losing his ability to speak. Further complications meant doctors were going to have to amputate both of his arms and both of his legs. Instead, he chose to starve and dehydrate himself to death, which, as his daughter Laura said seemed really to be piling torture onto torture. Others like Ronald Phelps deserve compassion and choice, not more suffering to find peace.
Here is Drew Sperry, who died painfully from ALS and whose greatest fear was not dying, but living, in his own words, “trapped inside my body gasping like a fish on the wharf”.
Let's not forget about Jean Brault, a Quebec man who had a blood clot in his brain and over a period of years suffered from a series of debilitating strokes. Mr. Brault thought, when the legislation came into effect in Quebec, that it meant release from his torment. He was told by his doctors that he met the criteria: he couldn't walk, he was losing his ability to speak, and he was in an incredible amount of pain. But he was also told he wasn't dying fast enough, so he starved himself for 53 days and dehydrated himself for eight days before he was able to qualify for an assisted death. He told the media that he had to self-mutilate to be liberated from suffering.
The government needs to ask whether these are the only choices available to people like Linda, Ronald, Drew, and Jean: to suffer horribly for years or even decades before dying a protracted, painful death or to starve and dehydrate themselves to death, and now, with this narrow and restrictive legislation, to show courage in the face of their suffering and to go to court to fight for their right to die.
We ask that proposed section 241.2 be amended to use the court's language in Carter and to strike “incurable”, “advanced state of irreversible decline”, and “natural death has become reasonably foreseeable”.
Now I will turn to the issue of advance consent. Without advance consent people with a diagnosis for a “grievous and irremediable medical condition” such as dementia, Huntington's, or Parkinson's will face a cruel choice.
This is the one the courts sought to avoid in Carter, to try and take their own lives far too early while they may still have months, or even years left ahead, but while they are still physically and mentally able to do so, or to die in a manner they would describe as horrific.
This is Gillian Bennett, a B.C. woman who was diagnosed with dementia. In the summer of 2014 she took her own life while she was able to, and in her words “I, Gillian, will no longer be here. What is to be done with my carcass? It will be physically alive, but there will be no one inside”.
Here's Margot Bentley, a former dementia nurse who in a cruel twist of fate said she wanted to be allowed to die if she ever developed dementia. She has now been living and dying with dementia for 17 years. As her daughter Katherine says, she is indeed terminally ill, she and people like her. In 2011, in Canada, over 740,000 Canadians are living with dementia. That's 15% of the population over the age of 65. They are completely excluded from this legislation. They cannot ask for an assisted death in advance under this legislation, and they can't ask for it while they are still competent. They will not qualify.
In the summer of 2015 Lee-Anne Peters, who was 30 years old, took her own life after a number of attempts. She was in the mid stages of Huntington's disease, and she knew what was coming for her. Her mother Lisa said Lee-Anne prayed every day to be allowed to choose her own time where she could no longer enjoy life, but because there was no legislation, she was forced to end her life early, alone, and without friends or family, while she was still able to.
Gillian, Margot, and Lee-Anne represent hundreds of thousands of Canadians who have already been given a life sentence. By excluding advance consent, the federal government has acknowledged their Charter of Rights will be violated. The legislation must be amended immediately to include advance consent, or the federal government must provide a sincere commitment to ensure whole groups of people based solely on their medical condition are not discriminated against, and add a statutory mandatory mandate requiring an independent expert study of the issues with a prescribed deadline of 18 months to report back to Parliament with possible amendments to the Criminal Code. This remedy may also be applied for the inclusion of mental illness and competent minors.
In conclusion, if this legislation is not significantly amended then we can expect to see more seriously ill, chronically ill, sick, and dying Canadians who will have to go back to court to access what we believe will be their charter rights. Haven't enough sick and dying people already sacrificed so much for us, and haven't they already gone to court to establish the Charter of Rights for people who are grievous and irremediable ill?
Thank you.