Bureaucracy should not stand in the way of a dignified death

TheGlobeandMail.com – Opinion

The days when people had to make their final hours a gruesome public spectacle to advocate for the rights of others to die with dignity were supposed to be over.

Yet 2½ years after medical assistance in dying (MAiD) became legal in Canada, the seemingly endless legal and bureaucratic battles continue.

On Nov. 1, Audrey Parker took her final breath, surrounded by family and friends in her Halifax condo.

Living with stage-4 breast cancer since 2016 and her condition untreatable, Ms. Parker met all the criteria for an assisted death but was hoping to celebrate one last Christmas. However, cancer had spread to her brain, and she feared that might impair her ability to give consent in her final hours.

You see, under Canada’s MAiD rules, to be eligible a patient must have a “grievous and irremediable medical condition,” their death must be “reasonably foreseeable,” they must be capable of informed consent, they must have the approval of two independent physicians (or nurse-practitioners), make the request in writing in the presence of two witnesses, have an unofficial cooling-off period to be sure their decision is final and then give “late-stage consent” just prior to the injection of the drug cocktail that will hasten death.

Having checks and balances is good, but at a certain point, we have to respect a person’s choice without making them jump through another fiery hoop.

Of course, anyone who requests MAiD should have the right to opt-out at any point, and about 5 per cent do.

But progression of the illness itself should not strip people of their express wishes. When you have terminal cancer and make a reasoned decision to have hastened death, the cancer eating away at your brain should not be able to negate that decision.

That strips people like Ms. Parker of agency and exacerbates their suffering. She was right to worry.

Since assisted death became legal (December, 2015 in Quebec; June, 2016 in the rest of Canada) to the end of December, 2017, a total of 3,714 people underwent the procedure.

But data from some provinces reveal that about 8 per cent of MAiD requests are denied; the main reason is loss of competency, followed by a practitioner judging that death is not “reasonably foreseeable.”

In addition, about 14 per cent of approved MAiD requests are unfulfilled because the patient dies before they can get an assisted death, which again speaks to the ponderous nature of the process.

Speaking of bureaucracy, on Nov. 1 new federal regulations related to Bill C-14, the Medical Assistance in Dying bill, took effect. These include new reporting rules that will vastly increase the amount of data collected, as well as standardization and centralization.

This is a good development, at least in theory, especially considering that data collection is inconsistent around the country. Monitoring is critical for transparency and accountability – to know how the law is working so the government can tweak where necessary. (Which, unfortunately, Ottawa has so far refused to do.)

But MAiD practitioners worry that some of the requirements could prove onerous and create yet more impediments for patients.

Much of the data collected is reasonable – where and why an assisted death has occurred, or why a patient was refused the procedure. But MAiD providers are also asked if the patient accessed palliative care, if they had disability supports, how they ensured witnesses were independent, how they assessed the “voluntariness of the patient’s request” and more.

Some of that data is difficult to collect, and some has potential legal implications. Worse yet, practitioners could be criminally liable – with penalties of up to two years in prison – if disclosures are not done properly, which seems like overkill.

Quebec’s College of Physicians has told doctors in the province to refuse to follow the new federal reporting rules, saying they risk violating privacy rights because physicians must provide a patient’s health card number and postal code.

There are, of course, much more important issues to be resolved, notably whether patients with dementia can give advanced consent, whether people with severe mental illness and mature minors should be eligible for assisted death, and whether health care institutions with religious affiliations should be able to refuse MAiD.

But as the law evolves, we should not forget its fundamental raison d’être: To mitigate suffering.

When Canadians opt for a dignified death, we should be comforting them – not choking them and their health-care providers to death with red tape.

https://www.theglobeandmail.com/opinion/article-bureaucracy-should-not-stand-in-the-way-of-a-dignified-death/

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