Critical Times: Medical Assistance in Dying

Categories: ADVOCACY, LIVING WITH DEMENTIA, NEED TO KNOW, VOICE OF LIVED EXPERIENCE|By |Published On: June 30, 2021|

Are you considering MAiD? Do you want to consider MAiD?

Either way, there are two critical times for consideration of MAiD by people with dementia

Are you considering MAiD? Do you want to consider MAiD? Either way, there are two critical times for such consideration for people with dementia or for those not requiring immediate assistance.

Recent modifications to Medical Assistance in Dying (MAiD) legislation created by C-7(March 17, 2021) have introduced the use of a “Waiver of Final Consent.” And, if and when, the Government accepts the use of “Advance Requests”- requesters of MAiD, including people with dementia, will have a much easier, clearly defined route of consideration.

For purposes of illustration, I shall restrict further explanation for persons with dementia.

You must ask while you can still think and rationalize outcomes of choice.

– Dr. Ron Posno

Two Critical Times 

Time to Ask. Some people just wait too long. They wait too long for an original diagnosis, and then even with a firm diagnosis, they post-pone planning/decision making until it’s just too late to undertake anything effectual. Hopefully, you’re not in such a ‘denial category.’

Here is what you must know and understand. Dementia is a progressive, neurodegenerative disease. This means that all your thinking, feelings, actions, and reactions are diminishing to the point where your existence is that of a child - without the capability of any regeneration. Most dementia scholars describe this process in stages from three to fifteen. I prefer three - early, middle (transitional), and final (end-of-life).

The whole process varies from one or two years to as many as fifteen. So the timing is described in terms of behavioural or cognitive terms. You must ask while you can still think and rationalize outcomes of choice. Most people can do that through the early stage, but sometime during the middle stage - that transitional period when you change from a person with some independence to a person who is increasingly dependent upon care givers - you must make the choice. It doesn’t matter whether you’re requesting a “Final Waiver” or an “Advance Request,” you must ask for MAiD whilst you’re capable of independent judgment. At least two providers of MAiD will question you until they are satisfied that you understand your progress with dementia and that you are making this request solely on the basis of your judgment.

Time for MAID. Just because you’ve completed and signed a formal “Request for MAiD,” doesn’t mean you must undertake such assistance right away. Because the rate of dementia degeneration varies so much, you may be capable of living with pleasure and purpose for a number of years. The time for MAiD (actual administration of drugs) is a time of your choice. You may decide to choose a date and time while you’re still able and independent ... or sometime later - if you complete and sign a “Waiver of Final Consent (Final Waiver).”

Preferably, the Final Waiver will be prepared in consultation with your expected MAiD Provider and it will specify a possible date and/or a specification of conditions with which you choose as determinants of an existence with which you cannot accept as “life.” These determinants or conditions may be derived from generally accepted descriptions of dementia degression like the FAST Scale* or some other clinical description of dementia behaviours.

* FAST stands for Functional Assessment Staging Tool. This scale was developed by Dr. Barry Reisberg, who is a leading expert in Alzheimer’s disease. It’s used to help doctors, medical professionals and family members understand, talk about and follow the progression of dementias such as Alzheimer’s disease.

You are not restricted to clinical descriptions. You may derive your listing of unacceptable conditions entirely by yourself - providing this listing is understandable and accepted by your MAiD provider. And, hopefully, since the anticipated timing of MAiD administration will occur when you’re no longer independent, you will include your Substitute Decision Maker (SDM) or POA-Health* in the discussion and decisions of your conditions for MAiD.

Important clarification. A SDM has no legal authority in regards to MAiD. A Power-of-Attorney -Health (POA-Health) has the legal authority/responsibility to request treatment and to refuse/decline treatment - but not to initiate any treatment (like MAID) on your behalf. Your SDM likely lives close and is providing primary care. S/he is best positioned to provide advice and clarity to your MAiD provider (or any other treating clinician). Your SDM may also be your POA-Health, but must be so assigned in your (living) Will with your lawyer. After a loss of capacity - if a Waiver of Final Consent is in place - your MAiD provider is the only one with the authority (and must bear the responsibility) to proceed with MAiD. I recommend establishing a good working relationship - with all afore named parties - well before any need for a decision.

I am 82 years of age and I have dementia. My formal request for MAiD has been accepted by my MAiD provider.

– Dr. Ron Posno

Personal Example. I am 82 years of age and I have dementia - Minor Cognitive Impairment (diagnosed 2016) - which is currently transitioning into Alzheimer’s. My formal request for MAiD has been accepted by my MAiD provider. We have not yet discussed nor completed my Final Waiver. I have three POAs and SDMs -my spouse as primary and a younger niece/nephew as backups for my spouse.

We have discussed my dementia and MAiD at least annually since my original filing in 2019. Given the expectancy of my general decline of abilities, we established the following eight indicators as signs of that decline for which/when I will want MAiD. None of these is primary, but any of which - however brief - is a significant indication of the extent of my decline. If my SDM has not requested MAiD for me prior to such indication, it has to be accepted as my final wish and the time for MAiD.

Since there may be a significant period of time after signing my Final Waiver, communication with my MAiD provider will increasingly become a responsibility of my primary SDM. The provider and my SDM will become the person solely responsible for determining my time for MAiD. My Indicators as below are my final signs - there may be other major signs of decline (as determined by my SDM and provider) that may lead to an earlier time.

These are my wishes that I want included as advanced directives in my Final Waiver.

My Eight Indicators

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

Disclaimer - The views, thoughts, and opinions expressed in this article belong solely to the author, and do not necessarily reflect those of Dementia Connections Canada Ltd.

GET MORE INFORMATION

Learn more about MAiD in the second federal Annual Report on Medical Assistance in Dying in Canada (2020) released  June 30, 2021.

Watch Seven Obstacles Thwart Patients with Dementia from Accessing MAiD made by Professor Thaddeus Mason Pope, JD, PhD, HEC-C, Mitchell Hamline School of Law at the Canadian Bioethics Society.

ABOUT THE AUTHOR

Dr. Ron Posno has dementia — he was formally assessed with minor cognitive impairment in August 2016. Born, raised and living in London, Ontario, Ron has also resided in Quebec, Germany and Calgary. Nationally recognized for curriculum innovation in special education, Ron was a teacher, consultant and school superintendent. As a tireless advocate for people with exceptional needs, Ron has lectured in 13 universities and colleges throughout Canada and the United States. Before retirement, he became a popular motivational speaker addressing change in business and public institutions. Now, he speaks for people with dementia and their care partners.

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