Readers of this blog should be aware that the government is conducting a “conversation” — not a consultation — about advance directives for MAID. This exercise opened in mid-December 2024 and will close on February 14th. Sorry for being so late alerting you! You should consider participating — just click on the link below and work your way through 12 questions. It’s mostly “multiple choice”. Only a couple of the questions are open-ended — they provide boxes limited to 250 words, where you can express your short thoughts.
You don’t need to read what I have to say about it, but if you choose to, be aware that these comments represent my personal opinion, formed as I did the survey.
Question 1 telegraphed what might become of my input. I was asked to state whether I was generally pro or anti MAID. I chose the only option I felt would keep my response out of their trash bin: “Prefer not to say”.
Question 2 states that the criminal code in Canada right now requires that a person be capable of “consenting to receive MAID” immediately before it is “provided”. What if the person changes their mind and refuses MAID? Is that their “real” wish or is their prior expressed wish considered more “real”? These questions are not part of this “conversation”.
Questions 3 and 4 must be answerable, since I didn’t make notes about them.
Questions 5 and 6 attempt to address “concerns” that respondents might have. I answered their skewey questions with “Prefer not to Say,” but then was afforded a box into which I put my actual concerns, as follows:
– A health care provider proceeding to execute an advance request despite the person being content with their current circumstances.
– A health care provider over-riding the objections of loving, caring family members who were not allowed to input on the advance directive.
– A health care provider caving to pressure from impatient family members who just want to get things over with.
Question 7 telegraphs the actual two-step process which they intend to put in place. Step 1 is for the person to anticipate their “intolerable suffering” and put their intent to die by MAID into a formal document. Step 2 is when the person is incapacitated and has met the conditions they anticipated as being intolerable, then MAID can (should?) be provided. They then ask respondents to weigh in on whether or not the person should be euthanized if they seem to be content with their current circumstances even though they thought in advance that they would not be.
No notes on Question 8. As I recall, this may have been the question about my “values”. I was given three or four choices, as well as “I don’t know” or “Prefer not to say”. I have a lot more values than that, don’t you?! Only one of theirs was remotely acceptable to me: Protecting vulnerable people. My check mark looked lonely and sad.
But Question 9 prompted me, and gave me space to write about what I thought should be other potential conditions or safeguards. Here’s what I said:
The questionnaire assumes that “health care professionals” are objective experts and morally flawless, whereas we know that some health care professionals are extremely enthusiastic about MAID are are oriented to “getting around” — and helping applicants get around — any safeguards that might be spelled out. It would, objectively, be SAFER not to pass laws allowing advance requests. However, the questionnaire clearly telegraphs the government’s intention to allow this practice. It seems to me that all of the “safeguards” are aimed at safeguarding the health care professionals from criminal exposure when they “provide” MAID in questionable circumstances. They don’t seem geared to actually protecting the lives of vulnerable people.
Finally, in Question 12, they got around to anticipating my main concern:
Consider a person who no longer has the capacity to make decisions and meets all of the conditions outlined in their advance request that describe enduring and intolerable suffering and advance decline in capability, and yet they appear to be content. Select the statement that best describes what you think should happen next:
- The person should receive MAID because all of the conditions set out in their advance request have been met as this is in keeping with their express wishes.
- The person should not receive MAID despite meeting all of the conditions in their advance request but should be reassessed at a later time when they no longer appear to be content.
- Don’t know
- Prefer not to say
Obviously, the answer is the second option, since obviously the person is not suffering at all, much less intolerably, even though, in advance, they thought such a state would be intolerable. Should they be reassessed at a later time when they no longer appear to be content? Maybe, or maybe they should be offered a new pillow, a different dessert, a new music device or a pet kitty to stroke. Maybe it’s okay to occupy a brand new personality or set of preferences. Maybe it’s okay to have dementia. Maybe it’s NOT okay to watch them, waiting for them to be discontent because their simple human needs aren’t being recognized or responded to. But there was not room in the “conversation” to express these thoughts. No input box for question 12.
This was neither a “conversation” nor a “consultation”. It was an exercise conducted to justify a predetermined course of action. I suspect the only people who will participate in this exercise are MAID enthusiasts, the “worried well” — and us! Let’s make our voices heard. Let’s aim for a society that actually treasures and values our elders and other incapacitated folks throughout their entire course of life.
Please input as you see fit before the Valentine’s Day deadline. We do not all have to fall into line and consent to the introduction of this questionable practice!!
KATHY KELLS wrote to me offline with the following comment. I thought she made an excellent point, so I included it here (with her permission) for folks to read, think about and possibly respond to.
“I read your blog. Personally, I have to say that I would most certainly make an advanced request if I was ever diagnosed with dementia given that I have no one on hand and currently in my life to be an advocate for me if I had a condition like that. There are far too many instances of elderly people with dementia wandering off and dying in freezing cold weather, etc. I don’t want to be one of them, thank you very much. You seem to assume that the elderly always have someone to look out for them. That’s simply not true. Many of us live on our own without anyone to keep an eye out for us. I’m lucky to be housed and have sufficient income for now to meet my needs. Many do not like the poor soul who froze to death last December in the parking lot of Shoppers just up the street. She had many community contacts and even volunteered at a local food bank, but no one was there for her to offer her shelter from our harsh winter. She had a makeshift shelter in that parking lot. I’m fortunate enough to have Kevin and Shannon next door, but they have their own elderly parents to be concerned about and I can’t burden them with my welfare. Therefore, an advanced directive would make good sense to me should I ever become cognitively impaired to the extent I no longer know who I am or what I’m doing.”
For purposes of making this a public conversation, I will reply to KK’s comment here:
You are pointing out a very important problem that we have addressed before in this blog: offering a quick and easy death vs offering real quality care in secure facilities with adequate funding that would allow enjoyment of life to continue until its natural end. There are a lot of us getting elderly and an enormous lack of investment in care arrangements that will force many, many people to fall through gaping socio-economic cracks. But I just can’t get my head around offering DEATH as the solution to these problems.
In your particular situation, the problem is not economic, per se, fortunately. But perceiving oneself as a burden or potential burden, for whom an early death beckons as an acceptable (or even desirable) solution seems all wrong. I wonder if advanced planning, for a person in your situation, might not move towards a solution that is more socially connected — for example, purpose-built congregate housing in which mutual care might play an important role. What do you think?
Perhaps but I prefer to age at home independently. I’m a very private person. I have difficulty with shared space: my pets. my piano, etc. I’ve read newspaper articles about women getting together in Golden Girls style living. That’s not as easy as one might think. Expenses and household tasks and maintenance must be shared and quarrels can easily arise. Retirement homes have their own set of issues due to set meal times, bed times, menus, staffing, etc. For fiercely independent minded people like me that’s not an option for now. It may well be in the future.
Meanwhile, the city must do better keeping the sidewalks walkable.
And therein lies the problem. No matter how dire the poverty, homelessness and deprivation that afflict society, we mean to protect ourselves and our cushion of wealth “for now”. And if disability comes along in our future, we want to protect the privilege provided by MAID law to end our lives, regardless of the impact this might have on the broader disability community. This is deeply discouraging to me.
I am closing this thread for now. Thanks for participating …
Thanks Patricia for sending that and providing your helpful comments which I referred to throughout the process of going through it. A truly awful questionnaire as you said. Sometimes giving the best possible answer meant you still had to give a deplorable answer.