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.
Shortly after being assessed with MCI(Minor Cognitive Impairments) – a likely precursor to Alzheimer’s – I wrote a paper entitled “MAID – A Failure By Design.” Although the direction of the Supreme Court Ruling(Carter, 2015) respecting what we now know as MAID heralded the possibility of the most compelling bit of health legislation since the introduction of universal health care in 1963, our legislators failed us by restricting access* to MAID for people with dementia including Alzheimer’s. They did so from fears of “mental incapacity” and “the need to protect the vulnerable.”
* access was also restricted for minors and persons with psychiatric problems, but my remarks will be limited to those experiencing any form of dementia including Alzheimer’s
Such fears are expressions of the general ignorance and stigma associated with dementia. There is no doubt that people with dementia(PWD) can experience periods of mental incapacity and/or vulnerability, but such conditions are at the worst only temporary and certainly do not prevail over the entire ten + years of living post assessment. PWD may experience some vulnerability around the time of initial assessment and most certainly during the later stages of their progressive decline when their mental functioning is severely limited. But as noted, that happens some number of years after assessment. For possibly ten years or more they need not be vulnerable nor will they require extreme forms of personal assistance. PWD need understanding, counselling and supportive services – not bad law.
I want to write about my concerns about MAID and address some of the issues proffered by supposed, common solutions – many of which you addressed in your communications with Jule. I will not be writing as an objective ‘academic.’ My remarks will be intensely subjective and entirely personal. In other words .. I am the case study.
The ruling of the Quebec Supreme Court of two months ago has reinforced our collective POV(Point Of View) that MAID has at least several failures. Fundamentally, as legislated it fails to provide for rights we are guaranteed as Canadians under the Charter of Rights and Freedoms.* The restrictive clause dealing with death in the foreseeable future and prolonged suffering due to pain and agony was struck down. The plaintiff was permitted to immediately seek MAID and the Federal Government was given one year to amend C-14 – the original Act defining the provision of MAID.
*See also “Charter of Rights For People With Dementia” by the Alzheimer’s Society of Canada – www.alzheimer.ca).
The Quebec Court decision opened the door for legislative change. However, Justin Trudeau – when questioned by the press – asserted that not only would the Federal Government accept the Court’s direction, the Government would examine C-14 with the possibility of removing other “restrictions.”
Now the door is wide open. Dying With Dignity Canada(DWDC) is ready. They’ve been waiting for the opportunity to advance “Audrey’s Law” – primarily direction to permit Advance Requests(ARs) in MAID. Others suggest Advance Consents(ACs) or Advance Directives(ADs). They are all good and moves in the right direction, but they also fail – in greater or lessor degree – in removing another major restriction – affirming consent for MAID at the final moment before administration (late-stage protection). You might ask in class, “..whose protection?” And you’d be right: is it the patient’s or the practitioner’s? I don’t really care. My recommendation is to remove late-stage protection. It would be a rare PWD in the final stages of progressive decline who would have the mental capacity or even the physical ability to answer such a question. Either remove late stage protection or force PWD to request and assent to MAID far earlier(even years) before they might so desire.
I am not opposed to ARs or ACs or ADs. Anyone of which is better than now, but the best solution is to get out of all the contrived, protective boxes in MAID and take a fresh look. Assistance in Dying is a medical treatment and it should be considered as such. In any other provision of medical treatment, the medical practitioners provide a diagnosis and suggest a variety of treatments/procedures/alternatives. The patient may(or not) consult with others then chooses(or not) a treatment/procedure/alternative. Fundamentally, the choice is entirely a decision matter for the patient. The practitioner’s response varies from compliance to seeking/obtaining assistance from another practitioner.
This is entirely how it should be. The patient has a problem; the practitioner has possible solutions; the patient and the practitioner agree(and may sign); the practitioner provides the care and service. The medical matter is entirely a confidential matter between the patient and the practitioner. Additional consultations with family members, care providers, and legal advisors are entirely a patient’s responsibility. The medical practitioner may assist, but only upon request and agreement of the patient.
Now compare that to MAID. In addition to all of the above, there must be at least two medical practitioners(sometimes more), two independent witnesses, and likely some family and/or care providers. Substitute decision makers with POA(Power of Attorney) and MAID Coordinators/Facilitators(paid by health care dollars) are frequently brought into the matrix of MAID support as well.
In another sphere of medical activity entirely, we consider and provide a DNR(Do Not Resuscitate order)* which has been in accepted use with all kinds of legal precedents in place. It’s simple to use. The medical practitioner obtains the serialized form from the government. The practitioner and the patient meet, discuss its meaning and intents, and co-sign the form. From that date, all medical practitioners, EMTs(Emergency Medical Technicians) are bound to follow the DNR. Simple; directly between patient and medical practitioner; and must be complied with until the patient so wishes an alternative treatment.
Why can’t access to MAID be established like a DNR?
* DNRs exist in Ontario. They may have different names and forms in different Provinces and Territories, but the practices are essentially the same.
In your response to Jule, you make a strong point of not trusting nor even expecting medical practitioners to be knowledgeable, professional nor consistent in their practices. Personal feeling and belief frequently prevail. I would not argue: certainly there are many instances of your fears. But, thank goodness, there are many more instances of just the opposite. Doctors like Ellen Wiebe and Stephanie Green from BC are just two examples of physicians who conscientiously take their ethics and concerns to mind when trying to deal with the overly complex requirements of MAID and their care for the patient. Every Province has leading physicians who test and push the legislated boundaries to do what is right and good for their patients. We should be revising MAID requirements to make it easier for PWD and their physicians to find the best way.
I have no solutions for those who fail professional standards other than to support the Colleges and professional associations to which they are obligated to belong. I am a firm believer in relying upon professional practitioners to set the standards and the means for enforcement. I do know that bad law only makes the situation worse for conscientious practitioners and their patients. MAID as it is, is a bad law. We can fix it.
Furthermore, I am pleased you are so familiar with assisted dying procedures in the Netherlands and Belgium. They are truly leaders but because they were first, does not necessarily mean they’re currently doing everything the best way. For example, Jocelyn Downie, Chair of Public Policy and Law – Dalhousie University, asks (in a shared communication of 18/10/2019) .. “I think it is important to note that the Netherlands law requires that the physician be of the opinion that the person is suffering (an objective standard) which explains why there are so few cases of MAiD for advanced dementia.” I interpret that to mean that the “objective standard” used by the physician was likely established by governmental or professional authority and I seriously question an objective standard(usually tests) can possibly match the subjective concerns of the patient, particularly when ..
People with Alzheimer’s disease can experience an advanced state of irreversible decline in capability before they lose decision-making capacity. An immigrant might lose the ability to speak the language of his adopted home after having spoken it for decades. A professional pianist might lose the ability to play the piano. An English Professor might lose the ability to read. A hiker might lose the ability to walk more than a block at a time. They might all still be fully capable of making decisions about their health. Alzheimer’s can significantly impair our ability to perform everyday tasks that involve physical coordination, memory, or planning, before we have lost the capacity to make decisions with respect to our health.
People with Alzheimer’s disease can also experience enduring, intolerable and irremediable physical or psychological suffering before they lose decision-making capacity. (Downie: Dalhousie Law Journal Blog, 18.10.2019)
In Canada now, we have an increasing number of MAID providers leading the way by undertaking a very subjective assessment of the patient’s decision-making capability and not depending nor waiting for some arbitrary, objective standards set by someone far removed from the patient. Nothing illustrates this better than this real case written and described by Kelly Grant of the Globe and Mail.
We can learn from the Netherlands’ and Belgium’s forays because we don’t have to make the same mistakes. Canada can (and is) doing better. We keep our focus on the patient.
I agree entirely that PWD are entitled to the best possible counselling and support – particularly when MAID is in consideration. MAID is an option, but it should be a real choice for a patient expressing distress and it shouldn’t be restricted by laws or requirements contrived to protect the vulnerable nor unprofessional medical practitioners. Please consider the following two examples, one is a new friend and the other is me.
Case One: Thirteen months ago, CBC Radio featured me in a broadcast about MAID. One week later, I received an email from Terri thanking me for my advocacy. She explained that she and her dad listened to the show and her dad immediately brightened. Apparently he was diagnosed with Alzheimer’s five years previously and since that time he had retreated from the world by hiding in his kitchen. He was a retired auto-worker and upon retirement, he became the neighbourhood fix-it man and indulged himself in his hobby of reconstructing classic motorcycles. He met frequently with his buddies at Timmies and the Legion. Life was good and he was enjoying and participating. His dementia diagnosis changed him.
He was frightened and hid in the kitchen. When he heard my words; he brightened. He went to his garage to work on his bike. He went back to Timmies and offered to help a friend replace his roof. He told Terri that MAID was what he was going to do. Terri told me it was like a “beacon of hope.”
Unfortunately, I had to reply to Terri, that she had to tell her dad that MAID was not available(yet) for PWD.
She told her dad and three days later, I got another email titled, “Dad’s Done It.” Apparently upon hearing that MAID was not available, he returned to his previous state of mind and late at night, he rode his motorcycle to the Detroit River and jumped in.
After almost two months of fruitless searching, her dad washed up away downstream – just before New Year’s.
Terri’s dad is not unique. There are many across Canada. Just think of what we could do if we could offer MAID as a real ‘Beacon of Hope.’ Upon diagnosis, we could ease their vulnerability by offering real years of living with counselling and support. Some may find life so good that they could choose to discard their ‘Beacon.’
Case Two: I’m not unique nor am I vulnerable nor incapable. I’m different: PWD with dementia are all different only because as people we’re blessed with differences that cause us to seek and live lives as meaningful as possible. We’re the same because we have developed a neurodegenerative disease that slowly destroys our brains and everything we’ve learned, experienced, and felt over the first part of our existence. Right from conception, I’ve learned; my body has learned and now with dementia, I am unlearning. It took me 75 years to reach the top of my learning curve, and now I’m on swift slide down as my brain and neurologic functions are reduced to that of an enfant. The slide may take five years and it may take fifteen years – ten likely. But I am dying and my life is being eradicated.
I do have possibly ten years of living – albeit somewhat reduced. I can live it well or I can be like Terri’s dad. The choice is mine because I have the security(maybe) of knowing I can access MAID when life becomes intolerable. I choose to live well. I wake in the morning and ask my wife, “what’s up?” We want to do something for fun and we want to help someone every day. That’s our plan.
I love to ask, “What’s your plan?” MAID can be in anyone’s plan. MAID can be a real “Beacon of Hope.” We just have to have the courage to do it right and to keep it simple. “It’s your choice.”
Dr. Ron Posno, B.A., M.Ed., Ed.D.