Why Bill C-14 must include the ‘reasonably foreseeable death’ clause

I was asked to speak in a national forum to oppose proposed Senate amendments to Bill C-14, which outlines legislation for Medical Aid In Dying (MAID) in Canada. I presented the text below as one of nine speakers on the panel, which included James Hicks, National Coordinator, Council of Canadians with Disabilities; Michael Bach, Executive Vice-President, Canadian Association for Community Living; Catherine Frazee, Professor Emeritus Ryerson University School of Disability Studies; Ellen Cohen, National Coordinator, National Network for Mental Health; Bonnie Brayton, National Executive Director, DAWN-RAFH Canada; Keenan Wellar, Co-Founder, LiveWorkPlay Ottawa; Amy Hasbrouk, Toujours Vivant-Not Dead Yet; and Dr. Harvey Chochinov, Canada Research Chair in Palliative Care.

The forum was attended by The Honourable Carla Qualtrough, Minister of Sport and Persons with Disabilities.

Share Your Voice: Community Forum for Robust Safeguards in Bill C-14, Ottawa, June 14 2016, hosted by the National Disability Rights Community.

My name is Jennifer Johannesen – I am the parent of a child who had multiple severe disabilities all his life. My son Owen died of unknown causes 5 years ago, at the age of 12. He was deaf and non-verbal. He could not walk, stand or hold up his head, and he required full support for all aspects of daily living. So I speak to you today as someone with extensive experience caring for a child who was exceptionally dependent, and therefore exceptionally vulnerable.

I am also a bioethicist with a focus on health policy. I have a strong interest in end of life issues, especially physician assisted suicide. In fact, my thesis, which I researched for a year and completed last month, focused on the exact topic we’re discussing today: the use of safeguards to protect vulnerable people – these are people who are at risk for not only abuse and mistake, but also the more subtle influences of societal coercion, imposed judgements of quality of life, and health care rationing practices that result in gross inequities and place undue burdens on Canadians with disabilities. So I also speak to you today as a policy analyst and bioethicist, who is strongly informed by my family’s experience in the health care system.

With this as my background, let me be clear on where I stand: we must keep the ‘reasonably foreseeable death’ clause in Bill C14 because none of the other proposed safeguards go far enough to protect Canadians with disabilities. Nor do they protect other vulnerable people. I would go so far as to say, they protect no one.

The removal of the ‘reasonably foreseeable death’ clause means that medical assistance in dying would become a purely demand-driven service. It means that objective clinical assessment by the health care provider would be completely removed from the approval process. The removal of the clause means that an individual could keep shopping around until they find two agreeable providers. It means that there would be no objective grounds for a request to be denied.

Let me say that again: it means that, other than in cases of clear incapacity, there would be no objective grounds for a request to be denied. I think the proposed safeguards function only as speed bumps – slowing things down but not capable of obstructing the path, even when needed.

Keeping the clause, however, does a number of things:

It provides clarity to health care providers and the public alike, as it removes a requirement to somehow evaluate and verify a person’s suffering – we know from the literature in multiple disciplines that this is an impossible task.

Keeping the clause allows health care providers to perform the work they have been trained to do – which is to make clinical judgements based on observable, objective, evidence-based criteria.

And keeping the clause ensures that we do not remove the only effective safeguard in the entire bill that protects Canadians with disabilities. I will elaborate: Bill C14, with or without the clause, may indeed provide relief to someone who is suffering terribly – but it provides no means by which to understand or address the source or the nature of the suffering.

As a society we have miserably failed Canadians with disabilities – people who live on the margins and in intersectional spaces – we have failed to provide opportunity, safety or community.  We have failed to effectively address or protect their concerns and interests and priorities.  Yes, many people are indeed suffering – from poverty, from disenfranchisement, from exclusion, from poor health care, from poor palliative care.

Do we really believe that the proposed safeguards will truly ferret out these conditions, help providers identify why someone is suffering, or protect those whose suffering is due to long standing injustice and inequity?  Senate amendment to include mandatory palliative care consultation is a step in the right direction, but time will tell if this isn’t also just another speed bump.

As we have heard, Canadians with disabilities are deeply, and rightfully, concerned about Bill C14. The ‘reasonably foreseeable death’ clause must remain in the Bill to function as a safety net. It is the DO NOT ENTER sign – not just a speed bump – to ensure that we do not fail Canadians with disabilities yet again.

Keeping this clause will no doubt make some people unhappy.  But this cannot be the deciding factor. Minimizing risk of undue harm must outweigh the demands of those who feel this clause excludes them. Good policy balances individual freedoms with protecting vulnerable people. Good policy provides clarity and consistency.

Without this clause, proposed safeguards are not enough. Keeping the ‘reasonably foreseeable death’ clause is the only option for maintaining any sort of safeguard to protect not just Canadians with disabilities, but all of Canada’s citizens.