About a decade ago, Camosun university transfer student Joanna Webber’s uncle decided he wanted to be euthanized.
Half of Webber’s family lives in Holland, where assisted suicide is legal. When her uncle, who was suffering from Multiple Sclerosis, started considering this end-of-life decision, her entire family was involved and backed him up.
“The whole family came together and made the decision,” she says. “Everyone was really supportive.”
Webber says her uncle’s demeanour changed when he decided on a date for his death.
“When he had set the date he was so happy and just living life,” she says. “There was a brutal heat wave in Holland that summer, but he didn’t care at all.”
Before his disease progressed, Webber’s uncle was a doctor and researcher, and decided to give his body to science upon death. Part of what changed after his decision to die was that he now had some certainty in his life.
“Multiple Sclerosis is really intense because you lose different functions slowly,” she says. “You never know what’s coming next.”
Webber feels that the open discussion about her uncle’s chosen death helped the family as well.
“In Canada, we don’t have the choice to come to that conclusion; you can’t discuss it with your family members because that would just be crazy,” she says. “In Holland, you can actually talk about it. They have counselling for the family to help them come to grips with it.”
Leaving home to die
Globally, there are thousands of suicide-related organizations, both for and against, with valid arguments on both sides.
Belgium, Luxembourg, Holland, and Switzerland allow different forms of assisted suicide. As well, three US states—Oregon, Washington, and Montana—have recently allowed physician-assisted suicide for terminally ill patients only.
But in Canada all forms of euthanasia and assisted-suicide remain unlawful, although the law has been challenged in court several times. Under the current Criminal Code, a person who aids or abets suicide can be imprisoned for up to 14 years.
Currently in BC, a Vancouver woman named Gloria Taylor, the BC Civil Liberties Association, and three others are challenging the law preventing assisted suicide. Taylor, 63, suffers from ALS, or Lou Gehrig’s disease, and wants the same rights as people in Holland and other parts of the world.
ALS is a degenerative disease causing muscle waste; eventually all control of voluntary movement is lost. When internal muscles such as the diaphragm fail, patients are unable to breathe on their own. Often sufferers of ALS die from respiratory failure.
Diseases like these are often brought up when right-to-die advocates make their case in court. Degenerative diseases act slowly and are unpredictable. Some people live for years, although they are often unable to walk, eat, or take care of themselves, while the brain stays intact.
In the case of Taylor, she is physically unable to commit suicide on her own, although mentally able to make the decision. Under the current law, she would have to ask a loved one or doctor for assistance, putting them at risk for prosecution.
The three other plaintiffs in the Carter v. Canada case are Victoria doctor William Shoicet and Lee Carter and Hollis Johnson, a married couple who flew Lee’s mother, Kathleen, to die with the help of an assisted-dying group in Switzerland earlier this year.
The couple’s participation in the trip has put them at risk for criminal charges, but they have come forward because they believe these services should be available in Canada. The trip to Switzerland cost over $30,000, and had to be done under a shroud of secrecy. The mother was unable to say goodbye to her friends, and the family couldn’t tell anyone their plan, which they believe was an unnecessary cruelty.
Regulation by prohibition
Canadian Alex Schadenberg is the executive director of the Euthanasia Prevention Coalition (EPC); a group that believes all forms of euthanasia and assisted-suicide should remain unlawful. EPC was created after the highly referenced Sue Rodriguez case, which drew a lot of attention to the right-to-die movement.
Schadenberg switched his focus from pro-life advocate to the alleged dangers of euthanasia and physician-assisted suicide and formed the EPC, which is acting as an intervener in the Carter v. Canada case.
“We need a law to protect our citizens,” says Schadenberg. “We need a law sometimes to protect me. For us to have a just and fair society, we can’t have a situation that says, ‘You have the right to kill me.’ It doesn’t work.”
Russel Ogden, co-founder of the Farewell Foundation in Vancouver, got his start researching the assisted suicides of AIDS patients in the early ’90s, and has been studying self-chosen death ever since. The Farewell Foundation is also acting as an intervener in the Carter vs Canada case. He believes the Swiss approach to assisted suicide does work, and has a place in Canadian society.
In Switzerland, assisted suicide is done outside the healthcare system, with help from assisted dying groups, as well as doctors, nurses, and psychiatrists.
“It has a combination of upfront safeguards, as well as after-the-fact safeguards for every self-chosen death,” says Ogden. “In order to receive assistance with dying in Switzerland, a person must undergo a process of eligibility, an assurance that they are not operating under any misapprehension of what their suffering is, that they are making a fully informed request, and that there is no undue influence or coercion.”
Assisted deaths in Switzerland are reported to the coroner, police, and prosecutor, and an immediate investigation follows.
“The consequence of that,” says Ogden, “is it’s unlikely that anybody wishing to act in an unethical manner is going to choose this approach.”
Schadenberg, on the other hand, believes that coercion is impossible to prove, and feels that the Swiss model, too, is flawed.
“The fact is, in Switzerland we’ve had the whole action of assisted suicide… change very quickly. It’s not about terminal illness,” he says. “For instance, now you have assisted suicide for couples. You have one member in a couple who is just an elderly person, and the other one who has a terminal condition, and they’re doing assisted suicide for that. So, you know, as time goes along, people say there isn’t really any abuse. If you allow everything, then I guess there’s nothing that you can do which is wrong.”
Ogden feels that keeping the conversation about assisted suicide open and transparent leads to safe and responsible practices. Prohibition, on the other hand, just drives it underground.
“People still find appropriate medications and plastic bags to die,” says Ogden. “The prohibition is not stopping people. It doesn’t work.”
Right, wrong, or choice
The exact guidelines and protocol around assisted suicide vary between countries and states. In Switzerland, anyone can choose assisted suicide, no illness required, but in Oregon a person must have less than six months to live as diagnosed by a doctor. Ogden maintains that the issue needs to be about choice.
“This is about choosing the manner, the time, and the location of one’s death,” says Ogden. “At the moment, most people are dying in the hospital setting, and they don’t get to make a decision about when that happens.”
Often, palliative care patients are receiving so much morphine or other medication for their pain that they aren’t fully conscious at the end of their lives.
“The ability to say goodbye, at the time of your choosing, is enhanced if you’re picking the day that you’re going to die,” says Ogden. “You can gather the people that you want to say goodbye to, send the postcards, make the phone calls… If you’re in the typical dying process of most Canadians, you will go very slowly, in a prolonged way, in an institution.”
Ogden points out that neither he nor the Farewell Foundation are opposed to the current situation, but that some people would rather pick their final event with greater precision.
“There are different ways of organizing one’s dying process,” says Ogden, “and we believe that people should be able to have whichever option they would like.”
End-of-life care
The normal procedure when a doctor decides that no more effort should be put into sustaining life is to have palliative care take over. Palliative care can provide relief from pain and other distressing symptoms at the end of life, but is inconsistent throughout Canada.
In fact, there’s evidence to suggest that abuse of sedatives and painkillers is already happening during palliative care, both intentionally and unintentionally.
In his sworn affidavit as a witness for the Attorney General of Canada in the Carter v. Canada case, Dr. Jose Pereira discloses several ways in which palliative sedation is abused today. The abuses range from use of sedation to hasten death, use of sedation in inappropriate circumstances, inadequate patient assessment, and a number of other situations that arise due to clinician or physician fatigue or highly complex cases.
At the palliative care stage, medical staff turns its focus to the patient’s comfort without considering the side effects of, for example, morphine, which can cause respiratory depression or death.
Dr. Will Johnston, a general practitioner in Vancouver and chair of the Euthanasia Prevention Coalition of BC, highlights the difference between the use of morphine in palliative care and euthanasia.
“I’ve had people say, ‘You will give me a pill if it gets really bad, won’t you?’“ he says. “And I’ve been able to honestly assure them that it is considered completely valid and ethical palliative care to give a person as much pain relief as they want, as much sedation as they want, with the eye being on the pain and sedation, not the intent to kill.”
Johnston defends the state of palliative care in Canada, although a recent report released by the Royal Society of Canada, called End-of-Life Decision Making, as well as Pereira’s testimony, reveals the need for extensive improvements.
“At the moment, palliative care in Canada is not wonderful,” says Udo Schuklenk, chair of the expert panel that researched and co-authored the report.
But even if palliative care was improved across the board, the report points out the need for individuals to have end-of-life options.
“Surely the better the quality of your life is, and the better your palliative care is, the less likely it is that you would request assistance in dying,” says Schuklenk. “Having said that, for many people there is an existential suffering involved knowing that they have a few months or a year left, and they’re not prepared to wait for that. In the view of the panel members at least, that is a very reasonable response and it should be respected.”
Does decriminalization lead to criminals?
Johnston contends that society would be at risk should assisted suicide be legalized.
“The increment in suffering between, say, Gloria Taylor’s death in my care, using legal, ethical palliative care, and her death her way… will be small enough that it’s simply not worth the danger to society of changing the law,” says Johnston. “I can see how easily people are improperly influenced, and how the next stop could easily be… a suicide prescription. The proposal that we could control this stuff is, to me, unrealistic and naive.”
The End-of-Life Decision Making report looked at data from countries where assisted suicide is decriminalized, and conceded that there had been abuse of the system, as Johnston predicts.
To determine whether these abuses were happening only in societies where assisted suicide was legal, the panel also looked at countries where it’s unlawful: Canada, Britain, Germany, and Australia.
What they have found is that involuntary euthanasia is happening in those places as well. According to the report, there doesn’t seem to be any evidence at all that decriminalization leads to more abuse or more involuntary deaths.
“Our suspicion is that abuse is just taking place in any system,” says Schuklenk. “What we need to ensure is that the abuse is limited to the maximum possible extent. This is true in both societies where it is criminalized, and societies where it is decriminalized.”