More humane laws needed now

Having watched their father suffer terribly at his end of life despite his clear wishes to die with dignity, Catherine Marshall and her siblings are now at a race with the clock as their mother declines with Vascular Dementia. She has also declared her end-of-life wishes and desperately wants the option for advance requests for MAID.

When he was an older man, my stepfather was always pragmatic and downright humorous about his inevitable demise. For his 85th birthday gift, my husband created an outrageous gift certificate for a “peaceful death” of his choice at “Dr. Kevorkian’s clinic”, complete with many tongue-in-cheek offers. Dad (and the whole family) received this with roars of laughter. He loved the gift. Perhaps its levity is not for everyone, but we all found it bonding, and tender in its silliness. You see, Dad was not complacent. He made sure that his wife (who believed the same for herself) and his progeny all understood his wishes: If he couldn’t “go out” by firing squad (who he loudly proclaimed were coming EVERY year on his birthday, from his 80th onward), he would want to die with dignity and access MAID when his time was ripe.

My dad died in early spring this year, at age 99. But his adamant wish could not be fulfilled. He had already eloquently spoken with and gotten his approval for MAID from two doctors. The papers were finally signed and witnessed (with much effort due to COVID restrictions) and his death was foreseeable. BUT – as he was on a typically burgeoning level of painkillers to cope with his system breaking down and therefore could not speak or follow happenings completely coherently – the medical authority determined that, according to the law at the time, he could not give his consent on the day that MAID would be offered and, therefore, could not access what he wanted. He was allowed to continue to suffer 10 more days of pain, disorientation, frightening hallucinations, and heartbreaking calls for help to die, before he died “naturally”. Believe me, “indignity” comes nowhere close to describing this horror.

There was NO SENSE in this cruelty. The doctors knew what he had adamantly stated – as did his wife, his family, and his friends – but the law had blocked this humane end. His death was on the cusp of a law change which has now happened. Finally, with the passing of Bill C-7, you can sign the new “waiver of final consent” that allows your MAID provision to go forward even if you no longer have capacity to consent on your chosen day. But note: eligibility criteria are still narrow for MAID. I cannot urge you enough to educate yourself, complete all the steps, and final paperwork early if you are eligible, including the waiver of final consent which must include a chosen date. Do this while you still have decision making capacity to gain peace of mind and the peaceful end that you have wished for. You can ALWAYS decline on the day.

Aside from MAID, for people who just want to make any health care choices clear to their medical team, there are decisions which can be pre-chosen now, as well as changed anytime. Dying With Dignity Canada kindly provides researched and detailed forms which can inform you, be filled in, signed, and given to your loved ones to advocate for you.

• Download an Advance Care Planning Kit

Now, as well as during the last 20 years, my mother has expressed the same wish for MAID when she wants it. Her block is that she has vascular dementia. With dementia, she can be assessed for MAID but if approved she would likely have to choose a date earlier than she would like because of the risk of losing capacity. She states that she does NOT want to live any longer when she doesn’t recognize her children, when she loses control of her bodily functions such as swallowing, her bowels and being coherent and, obviously to her, if she becomes bedridden or if she has unremitting pain. If she waits, upon any of these occurrences, she may well not have sufficient capacity under current law to consent to MAID in the initial required paperwork and so also definitely not to the waiver of final consent. She is 93, and lives on a memory floor in a care residence close by, having lived here with my family all during COVID (my dad was already wheelchair bound during COVID; but we couldn’t get appropriate extra care for her in their retirement residence). She wants to sign paperwork NOW to state her wishes, before her memory is completely gone, to ensure her wishes are followed – BUT advance requests are still not allowed in Canadian law. Their inclusion is going to be reviewed by government. Advance request with safeguards should be her right – and my generation is next.

Any person who has watched someone, especially a loved one, suffer to die – frankly, anyone with sense and a caring bone – cannot ignore these conscientious pleas coming from so many Canadians and our so appreciated advocating organization, Dying With Dignity Canada. Please, please change the law ASAP!

Most sincerely,

Catherine Marshall and siblings – for our parents, Alfred and Anne Dobell, and ourselves

• Send a letter to your MP urging them to get the Parliamentary Review of MAID – including advance requests – back on track