It’s been one of the hottest topics in the death industry- doctor assisted death.

On April 14th 2016, the Canadian government announced the official guidelines of the highly anticipated doctor-assisted death legislation. As it stands, the law is limited to those aged 18 or older, mentally competent, suffering intolerably, and for whom death is reasonably foreseeable. However, these guidelines have already received an influx of criticism because the proposed law is not as permissive as recommended by the special joint parliamentary committee assigned to the case.

As we’ve reached the brink of legalizing doctor-assisted death, it’s important to understand the journey behind the legislation. Earlier in our research we interviewed chair of the End of Life Planning Society, Francoise Hebert to gain some insight on the evolution of the assisted death in Canada. Her original interest in the movement began with the death of her mother. After watching her suffer an exceptionally painful death of starvation from a rare form of MS, Hebert wanted more options for dying patients. At the time, the high profile Carter case was going through courts in British Columbia and caught her interest.

The Carter V Canada case significantly influenced the current assisted death guidelines. The unanimous decision of the court on February 6, 2015 struck down the Criminal Code of Canada, giving mentally competent and suffering adults the right to seek doctor assistance in dying.  The courts suspended its ruling for 12 months to give the government enough time to amend laws, later extended to June 6, 2016. As she followed the Carter story, it became clear the law would empower dying patients.

 “I just became interested in the thought that if the law could be changed, then this would give people options and I’ve always felt like people should be able to decide what to do with their lives,” explained Hebert.

Hebert began to actively seek volunteer positions related to the cause. She called Dying With Dignity Toronto and soon began volunteering with the organization, eventually becoming a board member.

 “Dying with dignity did two things, advocacy in the sense that it was trying to change the law. I believe that the criminal code should make exceptions for assisted dying for people who are terribly, terribly ill and who didn’t want to suffer anymore. It also had programs, information, education and personal counseling,” said Hebert.

After three years on the board, she stepped down to chair the End of Life Planning Society (EOLPS) in Toronto. As doctor assisted death gained significant attention in Canadian politics, the charitable status of Dying With Dignity was brought into question. The EOLPS was created when revenue Canada annulled the charitable status of Dying With Dignity due to the fact charities cannot oppose government law. The organization strives to help Canadians navigate end-of-life care through information and education. However, with the election of the Trudeau government she hopes Dying With Dignity will re-emerge.

“I always thought it was so stupid that it was perfectly legal to kill yourself by suicide, it’s perfectly legal to slit your wrists and to hang yourself and to jump off the 20th floor of a building. People do that because they’re desperate to not live anymore because living has become such a torture. And I thought, to be able to die gently would be so much better,” said Hebert.

Although she doubts her mother would have opted for doctor-assisted death, her brother’s fate may look different with the new legislation. As he faces the same rare diagnosis as his mother, Hebert hopes the option alone will bring comfort to patients.

“I don’t want to die in great pain, I saw my mother die a horrible death and brother has this disease now and he’s going to die a horrible death. I always wanted them and also me to have options at the end of life. Everybody wants to die gently at home, nobody wants to die horribly in pain in a hospital tethered to tubes and machines,” said Hebert, “but know when you’re sick and when you’re old and you know that death is going to come, knowing that you could end your life when you wanted brings comfort to people. It takes some of the fear away.”

Of the 260,000 deaths in Canada last year, Hebert estimates only three to five thousand would opt for doctor-assisted death. She mentioned current models of death legislation in the states emphasize the small amount of people the law would impact. Oregon passed the Death With Dignity Act in 1998 and about 70 people per year go through with it. This means that out of the 4 million people living in Oregon, only one out of every 100,000 people choose assisted death.

“This is not going to be the preferred way of dying, people want to live. I mean people who are old and sick they still have kids, they’ve got grandchildren, they still want to live so it’s only when they’re suffering becomes so terrible that they will ask for an assisted death, and then of course they’ll need to meet all the criteria,” said Hebert.

The guidelines for assisted death currently proposed by the Canadian government have already raised concern. Critics of the law say it won’t apply for those under 18 and will likely exclude many Canadians suffering solely from mental illness, since the law requires natural death to be “reasonably foreseeable”. The new guidelines may also raise concerns for those in the palliative care community.

Earlier in our research we met with Cheryl Moore, the executive director of the Stedman Community Hospice in Brantford. With the recent buzz of assisted death, the palliative care community is also preparing for some potential policy change.

“For any of us who do hospice palliative care, [assisted death] goes against everything we believe in. What we’re saying is if people were given good hospice palliative care through that life limiting illness…we would not be having this conversation- that’s my personal opinion,” said Moore. “So right now in Canada this is the whole focus and we do need to address it but, […] we’re saying, look at the supports that people need to get good quality hospice palliative care, and let’s get better at that. Then maybe this wouldn’t be such a focus.”

Moore explained that palliative care would need to have the resources to provide patients information about assisted death if requested. As for the future of the legalization of doctor assisted dying, Hebert predicts there’s a long road ahead. Once the law is proposed and evaluated each provincial government will come up with regulations for institutions able to perform assisted death, which may vary from the federal regulations. The 13 colleges of physicians in Canada are currently coming up with additional guidelines in preparation.