Advance requests essential in assisted dying

Canadians understand the legislation is about choices, says Pamela Wallin.

During the debate four years ago on Bill C-14, the federal government’s legislative response to the Supreme Court of Canada ruling allowing for medical assistance in dying, senators and MPS debated late into the night, showing just how complex and deeply emotional the issue is.

I had come to my own views on the subject watching my parents die in two very different but equally horrific ways: my father to painful cancers, my mother to Alzheimer’s.

Their suffering was unnecessary and preventable. It was the only kindness they asked for when their minds were clear — to be spared that inevitable fate. But it was not to be. The laws denied them the right to be heard and the right to have their lifelong wishes respected.

These painful journeys are taken by families every day in this country. Canadians with incurable or irreversible medical conditions suffer needlessly in hospital beds and care homes. And far too many are home alone, even though they have lost physical or intellectual function, because their families are miles or countries away and funds may be limited. This is just wrong.

Without the possibility of advance requests for medical assistance in dying (MAID), we have seen Canadians with terminal illnesses end their lives earlier than they would like or, worse, spend their last moments confused and fearful that they will lose consciousness before receiving assistance — living on without awareness, faculties or resources, either financial or human.

If a MAID candidate loses the capacity to consent, if they do not have an illness that is deemed terminal or a death that is deemed reasonably foreseeable, they must accept an unknown fate.

The truly brutal catch-22 is that a diagnosis of dementia and Alzheimer’s almost always means a loss of capacity to consent. But even when they are symptom-free and able to make a sound decision to request medical assistance, they cannot.

Last fall a Quebec Superior Court ruling struck down the “reasonably foreseeable” requirement and the section of Quebec law that says people must be at the “end of life.” The court declared that “the reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at a time and in the manner desired, which must, however, remain an entirely personal decision.”

The court agrees that no one can prevent our charter right to make choices relating to our own right to life, liberty and security of person. Our federal laws must reflect this.

The government has until March 11 to amend the current law and I am assured that the justice and health ministers are using this opportunity to improve the legislation. But it is still unclear if this will include advance requests. It must.

Canadians understand that MAID legislation is about choices. It’s not about forcing anyone to die or treating it as some “affordable” option to deal with “too many” aging seniors. We all agree there must be protections in the law for the vulnerable, people with disabilities or those suffering from mental illness. And we need to make sure that doctors and care practitioners never recommend MAID as a first choice when someone with a physical or mental disability seeks medical help or advice. And we must continue to help the provinces increase palliative care services.

I believe a balance can be struck in future legislation. The existing laws have created serious gaps in accessibility, and they are not administered fairly, consistently or in a timely manner.

It is particularly difficult in rural communities, often hours from a city hospital and with limited access to doctors and lawyers. We see this disparity in Saskatchewan, where in 2018 only 67 of the 172 approved requests for MAID were performed.

Legislators owe it to our families, our seniors, our most vulnerable, our medical practitioners and, most importantly, ourselves to secure that right to a quality of life — and a quality of death — when possible.

It is said that it is not the length of life, but the depth of life that matters. When we have carved out a good life, worked hard to do and be our best, there is no reason a dignified life needs to meet an undignified end.