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Susan Eng Headshot

Canadians Want A Good Life To The Very End

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Tell me if you can tell the difference between a promise and a right. It becomes very important if you need to rely on it. In the headlong rush to meet the Supreme Court's June 6th deadline to have assisted dying legislation in place, some things have fallen by the wayside -- the most distressing is the lack of progress on helping people relieve their suffering while they are still living.

The Medical Assistance in Dying Bill is back in the House of Commons, ready for the third and final debate and vote. Some difficult issues are left for further, more measured consideration -- requests by mature minors for medical assistance in dying, advance requests, and requests where mental illness is the sole underlying medical condition.

But unless the Senate review slows the process, in less than a month from now, Canadians will have the right to ask a doctor to help them end their lives.

While palliative care was apparently discussed, the only amendment was to change the preamble of the Bill to add some fine words:

"Whereas the Government of Canada recognizes that in the living conditions of Canadians, there are diverse circumstances and that different groups have unique needs, it commits to working with provinces, territories and civil society to facilitate access to palliative and end-of-life care, care and services for individuals living with Alzheimer's and dementia, appropriate mental health supports and services and culturally and spiritually appropriate end-of-life care for Indigenous patients."

The original bill said:

"And whereas the Government of Canada has committed to develop non-legislative measures that would support the improvement of a full range of options for end-of-life care..."

You can find the promise to improve access to palliative care in that passage but did you see any right to demand it? The preamble of a Bill is just that, not the law itself which sets out enforceable rights and obligations. Compare that with Bill 52, the Quebec Act respecting end of life care which states simply: "Every person whose condition requires it has the right to receive end-of life care" - which is defined in that Act as including both palliative care and medical aid in dying. Simple, clear and enforceable.

Why is this important? It would seem that everyone acknowledges the need for palliative care, so it should be readily available but it is not. Only about 30% of people needing palliative care get it.

There has been no shortage of experts calling for better access to palliative care and even greater numbers of politicians promising it. The Parliament of Canada passed motion M-456 on May 28, 2014 to establish a Pan-Canadian Palliative and End-of-life Care Strategy. Despite all-party support for the resolution, access to palliative care has not materially improved.

And despite election promises to spend $3 billion more for home care and palliative care, the recent federal budget did not set aside any funding. Presumably, the federal and provincial health ministers will prioritize this in their deliberations on a new Health Accord but there is nothing on the table now that will ensure access to palliative care by the June 6th deadline.

This is why the right to palliative care must be legislated and the simplest way to do that is to add the same section from Quebec's Bill 52 to the bill now being debated in Parliament.

Hopes were raised when in receiving the Special Joint Committee's report on physician-assisted dying the Ministers of Justice and Health stated that "It is important that we protect people's choices and freedoms in a way that makes sure our society protects the most vulnerable."

Assured access to high quality palliative care should always be one of the choices available to all Canadians as they face avoidable suffering. Indeed, research shows that one of the reasons given by those seeking assisted death was lack of alternative treatment and care options.

The inadequacy of palliative care services was a factor in Canada's mediocre ranking among high-income peers in the Quality of Death Index 2015 published by the Economist Intelligence Unit which also found in its review of 80 countries that "National policies are vital for extending access to palliative care". Canada's overall ranking was 11th, a drop from 9th five years ago and 18th in palliative care access .

Underlying the pressure and support for the right to assisted dying is the fear that people with debilitating and painful conditions will suffer a bad death. Many would try palliative care first, but they want the final option if it doesn't work for them. And indeed, in many cases, even the very best palliative care will not relieve their suffering. But given the limited and patchwork access to palliative care across the country, we are by no means able to guarantee that everyone who needs and wants palliative care is able to get it. And we should -- as quickly as we are making assisted death available.

In his book Being Mortal, writer and surgeon Atul Gawande writes: "Our ultimate goal, after all, is not a good death but a good life to the very end".

That is the promise of quality palliative care for any Canadian who needs it regardless of circumstance or geography.

All the fine words in the Medical Assistance in Dying Bill amount to saying that we will try to provide palliative care for everyone who needs it. Try harder.

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