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Think back.
March 13, 2020.
While many of us moved our offices to our homes, scrambled to figure out how to school our children, fought for scarce toilet paper and Lysol, and started to get used to a completely different way of living, the government released its “What We Heard Report A Public Consultations on Medical Assistance in Dying.” The report resulted from a 14 day window in January when Canadians commented online about the medical assistance in dying law in Canada (called MAID).
Regular rabble.ca readers will know that I wrote a three-part series about the legalization of MAID and its implementation from my first-hand experience: my husband, Jack, died with medical assistance in November 2018.
The federal government legalized MAID in 2016. You’ll know from my account and those of many others, that the MAID law is not without its critics because of those excluded from the legislation: mature minors; those wanting to make “advance requests”; those whose only medical condition is mental illness; and those with physical illness but for whom death is not reasonably foreseeable. The Council of Canadian Academies has studied and reported on the first three of these issues.
The last issue — people living with physical disabilities suffering but not nearing the end of their lives — was addressed by the Superior Court of Quebec in the Truchon and Gladu cases. In September 2019, the court released its decision in these cases, ruling that the current law is unconstitutional by denying this group access to MAID.
Although these decisions apply only to Quebec, the federal government accepted the conclusion and agreed to change the law for the whole country.
The federal government saw Truchon and the decision to make some changes as a chance to canvass Canadians’ views not just on how to implement Truchon, but on the framework more broadly — including advance requests. Hence the consultations.
Remarkably, there were 300,140 responses. It’s clear that MAID is an important issue for many, many Canadians. And the results show overwhelming support for expanded access. Many of us want to feel we will have some choice about how we die.
On February 24, 2020, Minister of Justice and Attorney General David Lametti introduced Bill C-7 which, if passed, would remove the requirement for death to be reasonably foreseeable and create different safeguards in cases where it is not.
It would also relax the issue of the final consent, waiving it for eligible people whose natural death is reasonably foreseeable and who may lose capacity to consent before MAID can be provided. (This Bill does not address all of the outstanding issues — it continues, for example, to explicitly bar individuals suffering solely from mental illness from MAID.)
Fast forward four months — the world has turned upside down and many February priorities, including this one, have slipped down or off the agenda.
During these months, I have spent time thinking about how much more challenging the end of my husband’s life would have been in the age of COVID.
First, the illness and treatment:
Gravely ill people require a lot of medical attention. While many medical issues are now being treated online or through video conference, it’s hard for me to imagine how effective that could be for a palliative patient where personal connection is a lifeline for the patient and for their caregivers.
While many have moved leaps and bounds into the technological era during the pandemic, it has not been without its challenges, especially for the grey-haired set, precisely the group more likely to be in palliative care.
Hospital visits are always stressful affairs, rushing to meet the schedule through unrelenting traffic, crossing fingers about parking, running to try to get a good wheelchair, etc. And that’s just getting through the doors.
Like most caregivers, throughout Jack’s treatment I was able to be with him at every moment to help him navigate the hospital physically, mentally and emotionally. The pandemic adds a whole new layer intended, understandably, to prevent virus spread. I doubt very much that patient caregivers are allowed into the cancer hospital, in all but the most extreme cases.
Beyond physician attention, patients in their last weeks require other kinds of support. Jack had a steady stream of PSWs, nurses, OTs, speech pathologists, and massage therapists through our house. All required close contact, and visited multiple patients in a day.
Today, this would risk COVID spread to patients and their families. PSWs, in short supply even during my husband’s illness, are now even more stretched, stressed by the work, the risks and the heightened bad press from the long-term care crises. Not a recipe for the calming caregiving that would help a dying person.
Then, the MAID process:
Jack’s MAID assessments were intense and difficult interviews where two doctors met separately with us to build rapport and determine eligibility, including capacity. These would not have been possible by video conference. Jack was too frail with limited ability to communicate. The assessors would not have been able to get a meaningful read on Jack’s intentions through Zoom.
A requirement for MAID is that two people must witness the signing of the MAID application. We had two friends in for this important step. Social distancing complicates this. Indeed, for those who rely on voluntary witness programs, many of them are simply shut down for now.
Jack was able to set the date of his death and the doctor made himself available. COVID has diverted medical attention away from a wide range of activities, including MAID, and services are much more difficult to get. Indeed, some Ontario hospitals shut down their MAID services to allow health care staff to focus on COVID issues.
Finally, the death:
Jack died surrounded by eight close family members (but not household members) and his death was followed by a celebration of his life by some 200 family and friends. Both of these events created a sense of closure and occasion which would not be afforded for grieving families now.
COVID demand:
COVID has increased the demand for MAID. People who are suffering from social isolation or who don’t want to risk contracting the virus may wish to move their death dates up. Others have expressed a desire to have MAID rather than go on a ventilator — not likely practical given the timeline required for MAID is longer than the health deterioration of a COVID patient.
The upshot — MAID is harder to get at a time when it is more important than ever.
Next steps:
The Quebec court initially set March 11 as a deadline for changes to the laws — in February, the federal government requested and received an extension to July 11. On June 11, David Lametti, and Patty Hajdu, the minister of health, announced that they requested another extension to December 2020.
Understandably, the pandemic has made parliamentary business challenging. We get it. But I urge the government to consider those who are dying or indeed dying to die, and to redouble its efforts to move MAID back up the agenda.
