Letter to David Lametti – Remove the Failures of MAID

On the week of July 12, 2020,  CBC National TV broadcast of their previously taped (March 5) Town Hall on MAID of which I was part.  Minister Lametti reiterated over-and-over that he understood each plaintiff and that the espoused needs would be studied in a forthcoming consultation and review of MAID.   So, I sent the following letter to Minister Lametti and relevant others.   If you didn’t see the broadcast, you may access it through the reference at the bottom of the letter.

DATE: 23.07.2020

TO: THE HONOURABLE DAVID LAMETTI, MINISTER OF JUSTICE AND ATTORNEY GENERAL
    THE HONOURABLE PATTI HADJU, MINISTER OF HEALTH
    THE HONOURABLE CARLA QUALTROUGH, MINISTER OF DISABILITY INCLUSION

CC: KATE YOUNG, MEMBER - LONDON WEST
    PETER FRAGISKATOS, MEMBER - LONDON NORTH

RE: FORTHCOMING REVIEW/CONSULTATIONS RE MAiD
________________________________________________________________


Dear Hon. David Lametti

It was a pleasure to meet you on the recent CBC broadcast of a Town Hall on Medical Assistance in Dying (MAiD).   I have written you on four previous occasions about the necessity of revising MAiD - particularly with respect to the needs and wishes of people living with dementia.

Your proposal of C-7 is good, but in terms of the overall needs of a suffering population, it is only a part solution.   Some of these needs were explained and exemplified on the Town Hall ... and in every case, you said their needs were understood and would be considered in your anticipated forthcoming consultations and review of MAiD.

I presume such consultation and review will take place shortly after anticipated passage of C-7 in November.

We have had MAiD in practice for almost five years, so we don’t need to be entirely dependent upon the hypothetical and conjectured problems of the Canadian Academy of Academies (CAA).   We have real Canadian data and the experiences of Canadian practitioners and volunteers in providing MAiD.   We also have the experiences of many deserving Canadians who are experiencing difficulties in obtaining MAiD (many like the people in the Town Hall).   These practitioners and participants should form the basic and essential elements of your consultation and review.

The Canadian Association of MAiD Assessors and Providers (CAMAP) is able to suggest participants and Dying With Dignity Canada (DWDC) can similarly suggest participants and volunteers - much like those in the Town Hall.   Hopefully, as requested before, I would like to be part of this review. (Complete resume material can be provided upon request.)

This could be the time to remove the failures of MAID and bring it forward to meet the promise and requirements of the Supreme Court of Canada.


Respectfully submitted

Dr. Ron Posno  B.A., M.Ed., Ed.D.
519-473-3479
1101-940 Springbank Drive
LONDON, ON   N6K 0E3


ATTACHMENT:    https://www.cbc.ca/news/health/town-hall-assisted-dying-maid-legislation-1.5491824

MAID anytime – with or without medical considerations.

In June I set out “Where We Were With MAID” largely as a consequence of a virtual presentation I had made to a men’s Probus Club in Mississauga (see post).   Toby Stewart, one of our supporters, caught it and submitted the following for consideration.  He’s positing an extension of my proposal:   he wants to request MAID anytime – with or without medical considerations.   Just when he’s ready and he’s willing to leave the final responsibility with his ‘Substitute Decision Maker’ as specified in his request and Will (Power-of-Attorney – Health).   He is not alone.   An increasing number of people have spoken to me about this kind of consideration.   This would mean a lot – particularly with those with mental health problems or those who are completely exhausted from fighting serious, painful medical conditions.

Think about it.   A number of us would like to know what you think.  (Please use my email address .. rnsposno@gmail.com)

Toby’s position:

I advocate farther than you do to completely ‘liberalizing’ Self-Euthanasia via MAID. My sole caveat (the same as is legally required with anyone’s Will & Testament) is that I be of ‘sound mind’ at the time I communicate my choice to die via MAID. (This can be communicated via an Advance Care Directive should one later become incompetent mentally… and that again parallels one’s only legal requisite when one creates one’s Will… and I have no problems with needing two witnesses for either of these two legal EOL-end-of-life documents.)

I believe that my right to die shouldn’t require some terminal diagnosis to qualify for MAID (nevermind all the other current legal hurdles) … after all, we each begin to die from the moment we’re born. Therefore, it follows that I (and anyone else who so chooses) should be able to die peacefully at the time of my own choosing — ideally before any severe pre-requisite medical condition otherwise requires me to consume limited healthcare resources over a potentially long duration (while displacing others more needing those same resources to survive). I will know when it is my own time to die – based upon much sound assessment and forethought, coupled with a communicated list of threshold criteria.

IF our laws prevent me from accessing this EOL — by my own choice when I’m still of sound mind — via a simple inexpensive injection, then I’ll choose a more violent means — which will be more traumatic to all concerned — my surviving family first (even though I’ve had ‘the talk’ with them), and secondarily any witnesses or first responders… plus potentially the person(s) driving the truck, train, bus or whatever.

Unrestricted access to MAID is eventually what I’d like to see in place… ideally removing assisted suicide from our Criminal Code altogether… and allowing anyone who chooses MAID as their right to die method, to proceed as one would with other any other ‘elective’ medical procedures… at the time of their choosing.

Thank you for facilitating this discussion for us, and for allowing me to contribute my hoped-for future MAID vision to you and to your other followers.

I am one of the many who submitted such points to the federal ‘CONsultation’… and I also comment similarly in other forums eg. Healthy Debate… and the old (pre-Ford) Health Quality Ontario… but without much effect – at least not so far. I will continue to advocate for ‘liberalizing’ EOL MAID!

I am also a DWDC member and contributor.

BE PREPARED – NOT SCARED

Good words!   This was set up as a webinar for our local chapter of the Alzheimers Society (ASLM).   It is designed to help people with dementia and their respective caregivers to better prepare for their coming years.

It details major considerations and takes people through three major stages:  Get Real – Get Ready – Get a Plan.   Sometimes amusing but always definitive, it’s proving to be a good resource for the best use of the remaining years.

Ron Posno

WALK WITH ME

Ever wonder .. do I have dementia?   Does your family wonder or are you concerned about a friend?

Common questions and they all need an answer.   This presentation was established for a Senior Women’s Probus Club in London.   Almost 100 attended and almost all reported that they had some answers and knew where to go for help.   Try it out.   I designed it to educate but also to show that people with dementia can live better in a dementia-friendly community.

Ron Posno

WHERE ARE WE WITH MAID? JUNE 2020

Good question … in February the Minister of Justice drafted Bill – C7, took it through the House of Commons, sent it to the Senate and announced he was hoping to clear it through the Legislative Assembly by June in order to meet the demands of the Quebec Superior Court.

And then nothing (presumably due to the COVID pandemic) … until two weeks ago when the Minister advised the press (Parliament isn’t working), that he had requested a five-month extension of terms from the Quebec Court.

Well, in mid-May, I made a Zoom presentation to a Senior Men’s Probus Club in Mississauga. Given the current hiatus, the club wanted to know where we’re at with MAID. You may be interested, too.

Ron Posno

WHERE WE’RE AT AND WHAT WE WANT WITH MAID

We haven’t communicated directly for some time, so I thought I’d try to bring you up to date. You know I’m most interested in meeting with Minister Lametti and his panel for the scheduled review of MAID legislation. On March 5, I was honoured to be part of a CBC TV National review panel on MAID in company with David Lametti et al. About eight persons representing various needs for MAID were also present. Susan Desjardin of the DWDC Board very ably assisted Lametti in questioning and responding to the panel. It took a whole hour, and I was pleased. Each panellist was able to present at least one concern to Lametti.

Unfortunately, the pandemic has intervened. The show was planned for broadcast on March 11 when Lametti and the government were expected to respond to the Superior Court of Quebec. Well, Lametti got a four-month extension, and the pandemic happened. Our panel review has been postponed indefinitely. I’ll advise when I know more.

Since we have to wait for governmental attention to return to MAID, I wrote the following plea to itemize the issues which I’d like to discuss with the planned and scheduled Review of MAID in June.

I’m not sending this to the media or Lametti yet. We need to get the door open again, but the world will move on. When I have the right moment, I’ll send it. However, if anything in my plea can serve you in any way, please go ahead and use it. And I’ll be glad to talk/email with anyone.

Attachments: In PDF and Word (docx) formats. Choose which works better for you.

https://www.posno.ca/wp-content/uploads/2020/03/PLEASE-COME-WALK-WITH-ME.pdf

https://www.posno.ca/wp-content/uploads/2020/03/PLEASE-COME-WALK-WITH-ME.docx

DEMENTIA SAFE

This week I spoke with the local ladies’ Probus Club about dementia   My emphasis was on ‘opening the door’ by eliminating fear and prejudice.   By all reports, I succeeded: the ladies want a better, dementia-friendly community.   They now know how.   They said ‘so.’   Try it on… 

WE ARE NOT ALONE

From deep in the heart of Mexico comes an American voice (Loretta Downs) speaking of “How To Die When You’re Ready.”  Loretta is sincere, personable and extremely well-informed.    She knows more about MAID than most Canadians – right up to the recent survey on the subject by the Federal Government.    Enjoy her video below

Not only will you gain perspective, but you may also find it useful in engaging others “in the conversation.”   I’ve already had people tell me they’re sharing it with ‘dad’ or ‘mom’ or their siblings.

Thanks .. Ron

REVISIONS TO MAID

On January 13, the Minister of Justice, David Lametti announced the beginning of a review to revise MAID.   It’s really in two parts – the first is a questionnaire to be included with the study of the  Should be  Should be Quebec Superior Court’s Ruling (Gladu and Truchon – September 2019).   The Prime Minister has already announced the Federal Government will not appeal the Quebec Court’s decision and will look at ways to remove ‘other restrictions.’   The second part will begin in June and anything can happen.   The study will encompass the Canadian College of Academies(CCA) report of last December.   CCA had been commissioned to present problems(no suggestions nor solutions) respecting MAID’s exclusion of minors(under 18), those with mental health problems, and people with dementia. 

I don’t expect a quick review (I may not live long enough).
As you might expect, I have prepared my recommendations based upon the need for MAID to be simpler, more caring, and administered with the dignity and privacy it deserves.   My submission follows.

A Brief to Professor Lemmens

DATE: 29/10/2019 

TO: Trudo Lemmens 

CC: Jule Briese 

FROM: Ron Posno 

RE: RESPONSE TO MS BRIESE RE MAID FOR ALZHEIMER PATIENTS


Dear Professor Lemmens: 

Please feel free to share any or all aspects of this response with whomever you deem appropriate. 

I appreciate your willingness to share your remarks to Jule Briese regarding MAID for Alzheimer’s patients with me for purposes of sharing discussion. Having been similarly employed as a professor, I can respect the limitations of your time and will understand if you cannot become engaged in some lengthy analysis. Jule and I simply want you to be aware of our thoughts and feelings respecting the limitations of MAID as it is currently legislated and practised. 

Continue reading A Brief to Professor Lemmens

As promised, Pauline Tardif has provided me with reference to the new ASC Position regarding MAID

While MAID is not to be regarded as obligatory .. it is a personal, informed choice and considered as a part of Advanced Care Planning.   Persons with dementia can say either “no” or “yes,” but they should be informed and counselled about all their choices with respect to the provisions of care – both living and palliative.

https://alzheimer.ca/en/Home/News-and-Events/Media-centre/Statements

I am elated!   It provides for everything we need: support for information about MAID;  counselling support for those considering a choice for MAID;  and acknowledgement of the shortfalls of the current legislation and the need for support for Advanced Requests (ARs).

We have a way to go, but this new ASC position clears the way for advocates for better legislation and professional practices.

Thank you to the ASC Board, Pauline and all the others who contributed to this new enlightened position.

Ron Posno

University can be hard. It’s even harder when you’re 81 and have Alzheimer’s

And just to illustrate that there is life after a diagnosis of dementia, here’s a friend of mine – Ron Robert – who at the age of 80 years took on the challenges of a university degree.   From grade ten years ago, he’s now an A+ student.   He’s also studied his own life and he doesn’t want to be “warehoused”:   he wants MAID.   Check his story …https://www.thestar.com/news/insight/2019/04/17/university-can-be-hard-its-even-harder-when-youre-81-and-have-alzheimers.html

For people with dementia, a fight for the right to die

Just this month (May 3), Maclean’s magazine posted a story on MAID by Shannon Proudfoot – a frequent contributor of articles featuring common problems of MAID and people with dementia.   You can check some of the current issues right here.

https://www.macleans.ca/society/for-people-with-dementia-a-fight-for-the-right-to-die/  

“Dad’s Done It”

People living with dementia are currently being denied their “Rights” as Canadians by not allowing access to MAID.   Here’s a story about Gus who died without the hope and chances MAID could have provided. 

Gus is not alone.   There are many people with dementia who could possibly benefit from having the opportunity to choose MAID.   They don’t have to choose – that’s very much a personal decision – but for many, MAID will provide a beacon of hope and the security of mind that comes from not having to endure the typical end-of-life issues that come with dementia.

Continue reading “Dad’s Done It”

Glenda’s story .. Bartosh: Assisted-dying law needs to change to allow advance directives | Vancouver Sun

Here we go again .. Glenda Bartosh, a strong supporter of the needs of people with dementia, just had her article published in the Vancouver Sun. I hope the Alzheimer Society for Canada is watching. David Lametti is in for a big one.

People with dementia want access to MAID.

Check Glenda’s story .. Bartosh: Assisted-dying law needs to change to allow advance directives | Vancouver Sun

Where Are We Now? (Feb 2019)

Let’s Keep Sue Rodriguez’s Fight Alive

Here on the 25thanniversary of the death of Sue Rodrigues and just past the hallmark death of Audrey Parker, we sit with MAID – which in spite of the Supreme Court’s direction(Carter, 2015) – was deliberately designed to deny Canadian Rights for people with dementia.   And to the bitter irony of all that has transpired to date, neither Sue Rodrigues nor Lee Carter would qualify for MAID today.

Svend Robinson ably supported Sue throughout her ordeal and reminds us all of her struggles in an article published in the Globe and Mail on 9 February, 2019.

On the 25th anniversary of her death, let’s keep Sue Rodriguez’s fight alive

– Globe and Mail, Feb 9, 2019

Dying with Dignity Leadership Renews Appeal for MAID

Dying With Dignity Canada(DWDC) as also renewed its appeal for MAID revision based upon the sacrifices of Audrey Parker.   Carefully read Dr. David Amies blog from the DWDC website.   He’s very clear and definitive:   MAID must be changed.   And then, sign the petition.   Remember Dana Livingstone’s petition from BC (on this website).   She collected more than 2600 signees from across Canada.  Just think what could happen when both petitions get the Ministers of Justice and Health.

There are two Canadian writers of some note:

Sandra Martin has written extensively on the subject.   Three years ago, she penned an extensive referral base entitled “A Good Death” and in January she contributed the following column to the Globe and Mail.

Shannon Proudfoot came to my attention with a wonderful story about “Jo” published in Maclean’s (Sept. 18/2018).   In addition to “Jo,” she embedded several reference to previous works.   All are excellent and do much to inform and encourage us all to search and to create solutions for the many of us afflicted with dementia.   Try this:

www.macleans.ca/news/canada/i-am-mine-this-is-what-alzheimers-is-like-at-41

MAID – Failure By Design

WARNING:   THE AUTHOR IS GOING TO DISCUSS ASSISTED SUICIDE IN TERMS THAT SOME MAY FIND OFFENSIVE

BACKGROUND:*   Some key points of the Carter vs Canada  Decision of February 6, 2015 by the Supreme Court of Canada are:

…  In striking down the old law respecting assisted suicide, the justices clearly explained why the ban contravenes our Charter of Rights and Freedoms. The prohibition, the court wrote, forces patients to endure intolerable suffering against their wishes and denies them autonomy over their bodies.

…  The judgment does more than just outline why the old law, which expired on June 6, 2016, is inhumane. It serves to establish choice in dying as a right for all Canadians.

…  The Supreme Court ruled the old law infringes on Canadians’ right to “life, liberty and security of the person” outlined in the Charter. Their reasoning takes into account binders of evidence-based research from countries and states where assisted dying is legal. And it addresses the heartbreaking personal stories of Canadians who were denied choice.

*   As explained by DWDC(Dying With Dignity in Canada)

Consequently, on June 17, 2016, the Federal Government created and passed C-14 —  legislation permitting Medical Assistance In Dying(MAID)   A real first for Canada and a beginning for Canadians to legitimately consider “end-of-life” factors as parts of their lives .. and as guaranteed by the Canadian Charter of Rights and Freedoms.   Unfortunately, MAID is a failure by design.

MAID excludes many people facing an overly long, prolonged process of dying because our legislators feared the reaction of some religious organizations and the protective cautions provided by Canadian and Provincial Physician Associations.   Our legislators set aside the wishes and voices of more than seventy percent of our population and our right to choose death as defined by the Supreme Court in its now famous, unanimous ruling in the Carter vs Canada  Decision of February 6, 2015.

There are many examples of those being denied MAID and their weary supporters are scrambling to get their cases before the Courts in the battle to get justice.   They are being fought by lawyers employed by various levels of government – at tax payer expense – and lawyers employed by church groups and physician associations.   It will take a lot of time and a lot of money – neither of which the patients and their supporters can afford.

Let’s take one case as an example.   It’s my own since I know it best.

Almost three years ago, I was assessed with MCI – Minor Cognitive Impairments – the precursor to one of thirteen forms of dementia.   They are all defined as non-treatable, progressive declines in mental ability leading eventually to a prolonged, difficult process of dying.   As of Dec 16, 2016:

  • dementia is one of the top ten diseases in Canada(more than breast/prostrate cancer combined);
  • 564,000 Canadians are currently living with dementia;
  • in 15 years, 937,000 Canadians will be living with dementia;
  • currently, 1.1 million Canadians are affected directly or indirectly by dementia;
  • 25,000 new cases of dementia are diagnosed every year;
  • 16,000 Canadians under the age of 65 are living with dementia;
  • 65% of those diagnosed with dementia over the age of 65 are women;  and
  • $10.4 billion is the annual cost to Canadians to care for those living with dementia.

Of all forms of dementia, Alzheimer’s is the most common – claiming seventy percent of all cases.   After three years of my MCI and feeling and experiencing a steady decline of my mental abilities, I have accepted the strong likelihood of eventually being classified as having Alzheimer’s(and if it’s not Alzheimer’s, then the end result will be the same – a long, difficult process of dying).

So I’ve begun preparing:   moving from house to apartment;   revising wills and powers-of-attorney as needed;   reviewing/revising investment plans;   meeting with family, friends and neighbours to discuss needs and possibilities.   The list goes on as my abilities decrease — driven by the desire and the necessity to make it as easy as possible for my wife to provide the care I undoubtably will require.

There are three major stages of progressive decline:   mild – moderate – severe(or terminal if we can disregard political correctness).   I’m at the beginning of the mild stage – four to six more years of easy life.   The moderate stage might last for another three or four years.   It’s the severe stage that creates the problem.   It may last for three years and it might end after one year.   But however long it may last .. it is too long.

Here’s the first design flaw:   the use of MAID requires a “death in the foreseeable future”.   What is foreseeable?   In some cases, some physicians believe it is a week or two .. or maybe a month in cases of a physical disease like cancer.   Some more enlightened are stretching foreseeable to a year.   Mental impairments are disallowed and degenerative nerve/muscle diseases just take too long. 

Now, Alzheimer’s doesn’t fit the bill:   it’s not physical and not a nerve nor a muscle disease.   My brain is simply shrinking — hardening and solidifying – and destroying nerve connections which control all thinking and feeling as well as bodily functions.  By the time I progress to the severe stage, complete dysfunction – sufficient to stop my beating heart or breathing – may take a year or more.   And I won’t qualify for MAID.

Here’s what I see in my foreseeable future.   I want my death to occur at the beginning of the severe stage of Alzheimer’s and not the end.   The following, common conditions of Alzheimer’s are the beginning of severe and when any one of them occurs, I want MAID:

  1. When I am unable to recognize and/or cognitively and adequately respond — with appropriate emotion and thought – to family members, care providers or friends;
  2. When I become persistently abusive – either verbally and/or physically;
  3. When I become frequently lost or wander without awareness or knowledge of my whereabouts;
  4. When I require physical restraints and/or a locked door facility;
  5. When I present the symptoms of acute depression or paranoia or melancholia or elective muteness;
  6. When I frequently experience visual, auditory, olfactory or tactile hallucinations;
  7. When I become frequently incontinent and require assisted personal cleaning;   or
  8. When I am unable to eat, clean or dress myself without assistance,

I believe I am stating, clearly and without any coercion or pressure, exactly the conditions under which I cannot tolerate living and I wish to die – easily and comfortably — with such assistance as may be provided by medical practitioners.   But MAID, as it’s being practiced won’t allow my assisted death and will condemn me to a remaining existence(not life) which I consider to be absolutely abhorrent.

Now, let’s consider the second major failing of MAID.   Consent to provide assisted death is contingent upon the patient being sufficiently mentally competent – at the time of such a request.   In my case, I am presently able and willing to make a request but it will be denied .. because it is requested too soon.   Why .. because of that old boon, my death does not fit the parameters of “foreseeable death.”   My natural and abhorrent death is years away.

Mental competence is also required and it must be so ascertained at the moment the practitioner is ready to provide assisted death becauseI have the right to change my mind.   If, at the time of asking, I am adjudged to be mentally incompetent, I can neither affirm nor decline my request for assisted death and any such assistance will be denied.

Without question or uncertainty, it’s a complete failing:   I cannot access MAID with an ‘Advance Care Request or Directive’ while I’m still mentally competent because it’s too soon.   And if we wait until conditions of the end stage are presented, I will be judged as mentally incompetent.

The framers of C-14 – those who established lawful access to MAID — with all their conscientious concerns, have consequently denied me – and thousands of other Alzheimer’s patients – a denial of our “right to life, liberty and security of the person” as defined by the Supreme Court of Canada.

MAID is a design failure.

Prepared by ..
(Dr.) Ron Posno, B.A., M.Ed., Ed.D.
London, Ontario, Canada

POST SCRIPT …

Is MAID a complete failure?   No, it’s not!   It’s likely the most significant and compelling health related legislation since the introduction of universal health care.   However, it’s not perfect and this paper was prepared to draw attention to a major failing in its implementation.   Since we’ve experienced more than two years of MAID and more than 3,000 assisted deaths, date has been collected and an analysis has been promised by the end of December, 2018.  (Unfortunately, no suggestions nor revisions have been requested.)  Without any evidence of untoward practice, more physicians are ready to consider MAID and maybe the fears of our legislators have lessened.   Nurses, with their more ‘hands-on’ provision of patient care have always been ready for MAID with more than eighty percent of their members voting in favour.

Let’s see if our legislators can reach further ..