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 ..

I’M NOT VULNERABLE!


BY DR. RON POSNO – A PERSON WITH DEMENTIA

 – 01.01.2019 –

The right to choose an assisted death was deemed a Canadian Right under the Charter of Rights and Freedoms  by the Supreme Court of Canada (Carter, February, 2015).   In June, 2016, the Federal Legislature created MAID – laws specifying the use of Medical Assistance in Dying in such a manner as to effectively deny persons with dementia access to their right because …the lawmakers wanted “to protect the vulnerable.”

I am not vulnerable!

Continue reading I’M NOT VULNERABLE!

PLEASE: DON’T PITY ME

BY RON POSNO

05/01/2019

There are three four-letter words:   pity, care, love.   Which one is completely unacceptable?   Of course, it’s pity, and unfortunately it creeps into the basis of far too many so-called support programmes for people with dementia … just like programmes for people with other disabling conditions.

Continue reading PLEASE: DON’T PITY ME

GET REAL ..

Frequently, the most difficult time for people with dementia are the hours and days immediately following their assessment.   This is when they first have to grapple with the fears, stigma and bias associated with dementia.   Unfortunately, if they can’t get past this, they’ll never be able to move on to a new life when they can live well with a better understanding and acceptance of themselves.

In my workshops I call this .. Get Real.

Here are two papers which I offer for reading and discussion.   The first is entitled, “I’m Not Vulnerable.”   The second is, “ Please No Pity.”

THE HOT CHOCOLATE AND DECADENT CAKE SOCIETY

Jule Briese and husband Wayne from Qualicum Beach, B.C. are working their way through dementia.   Like everyone, their way is unique.   Their story is told in the following.   Try their book – it’s good for you and good for anyone willing to share your progress.

Click the picture to read the article

Your Turn: Do Something

Sooke woman wants House of Commons to debate allowing MAID for people with Alzheimer’s disease

WATCH: A Sooke woman is petitioning the federal government to allow people diagnosed with Alzheimer’s disease to give advanced consent for a medically-assisted death. She began her fight after watching her mom, a vibrant artist, battle the disease. Luisa Alvarez has the story. (click picture)

This is just in…   February 1, 2019

Dana has won a big one for all of us.   The petition closed on January 30.   The results can be read at .. Petition e-1854 – E-petitions.

So many wanting access to Medical Assistance in Dying.   So many “not vulnerable;” so many not crying “for protection;”   so many “wanting their rights;” and so many wanting MAID corrected and their Advance Request(AR) respected and honoured.

Thank you Dana and all those who responded.   This is a big step forward!

What If … ?

Written by Ron Posno – a person with dementia

Everyone asks this question of themselves, their parents, friends, spouse … anyone who’s close enough to care.   Sometimes it’s frivolous;   sometimes it’s speculative;   and, sometimes it’s just plain, absolutely necessary.   For people with dementia – like everyone – it can be all those things and … painful, sad, and unavoidable.

Continue reading What If … ?