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!
I was assessed, more than three years ago, with MCI – Mild Cognitive Impairments – a precursor to one of several forms of dementia. Alzheimer’s is one of those forms and it alone accounts for more than 70% of all cases of dementia. So, as I progress, I’ll likely move into the early stage of Alzheimer’s – the first through a series of increasingly degenerative stages – mild to moderate to severe. By the time the severe stage is reached(could be 15 years from first diagnosis), I will be incapacitated to the point where thinking and personal care are impossible. At that stage, I will be vulnerable – entirely subject to the kind and quality of care that can be provided for me. But that’s possibly fifteen years down the road of life.
There is no fixed time-line. Everybody progresses at their own rate. Some take 10 years or less, some take 20 years of more, but the progression is always down … down to the severe stage – complete incapacitation. Part way through the moderate stage, a person with dementia will be unable to drive a vehicle or unable to properly attend to financial matters like banking or shopping. Without care or support, that person might be adjudged as vulnerable. Maybe with the right kind of care, s/he could add a few more years before reaching the completely dependent or vulnerable state. But that could be ten years or more from time of original diagnosis.
I’ve already had 3+ years and have some time yet before the early stage .. let alone the moderate stage. I’m not vulnerable … and I’m not alone. Most of the people(3 thousand +) first assessed with dementia this year will be (mostly)independent and not vulnerable for 10+ years. (see following note)
Like me, they’re not vulnerable and they are rational. They can foresee and understand the progressive stages of decline in the remaining portions of their lives. The final and severe stage is most feared because the life as they may have experienced will be reduced to mere existence. Their minds will be destroyed – incapable of memory, thinking, feeling – reacting only to exigencies of the moment. Their physical beings are entirely dependent upon others – often frequently exhausted caregivers.
Let’s consider a person without dementia who contracts some form of cancer. Her/his physician will carefully explain the progressive nature of the disease and the respective treatments. Stage four – the terminal stage – is something to fear. Effective treatments are rare, and if administered, are fraught with diminished function(mental and physical) and pain. Usually there is no cure – just a long, painful period of suffering experienced by the patient and her/his caregivers. Knowing this, and if a natural death is reasonably foreseeable, the patient may choose to apply for MAID. Two medical practitioners, upon assurances by the applicant of rational capability and free will, may accept the request. After a compulsory minimum waiting period of ten days, medically assisted death may be provided – if the administering medical practitioner is assured by the patient that she/he is still rational and freely giving assent to the procedure(last-stage assurance).
What is the difference? Are the final stages for dementia people really different from those of the non-demented? Possibly in terms of specific detail, but in terms of anticipatory fears – no. The person with an early diagnosis of dementia can be sufficiently rational to anticipate the future agonies of her/his caregivers and the indignities of irrational behaviours and personal care requirements.
Let’s suppose the non-demented person diagnosed with cancer – and fearful of the agonies of the final stage(just like a person with dementia) – requested MAID … not for the immediacy of his/her existence, but at a subsequent time of his/her choice. Would the request likely be accepted? Yes!
Let’s suppose a person diagnosed with some form of dementia – and similarly fearful of his/her forthcoming final stage – requested MAID … not for the immediacy of his/her existence, but at a subsequent time of choice. Would the request likely be accepted? No!
The person with dementia, for 5-10 years following diagnosis, may be as cogent and rational as the patient with cancer. Why are they excluded from MAID considerations?
In their proffered wish “to protect the vulnerable,” the legislators built-in two MAID exclusions: “foreseeable future” and “last-stage assurance.” The medical practitioners reviewing any request must determine that death must be in the “foreseeable future.” And upon the actual moment of medical assistance, the medical practitioner must be reassured by the rational, freely provided word of the patient that assistance in dying is still desired.
No problem for the cancer patient, but two big major ‘stops’ for the person with dementia. The person with dementia may be rational at the time of request, but death is too far away to be considered as “foreseeable.” And even if “foreseeable’ was stretched 10+ years, by the time the person with dementia wants MAID, he/she will neither be cogent, nor rational, nor capable of responding adequately for a “last stage assurance.”
The government says that’s good for people with dementia. They need “protection.” Other people don’t.
Well, the Supreme Court of Canada made no such distinction. In their Carter Decision of 2015, they stated quite plainly, “patients (should not) endure intolerable suffering against their wishes … assistance in dying is a right for all Canadians.”
This ‘protection’ by the government is just plain discrimination. MAID is a failure! People with dementia don’t need a bad law: they need better support and programmes. They need help in understanding dementia and how they can maximize their use of time between diagnosis and end-of-life considerations. They need the support of care-givers and programmes designed to activate their interests and declining abilities. And many will need the assurances driven by access to a choice of death with dignity.
MAID can be fixed. First, let’s drop this consideration of so-called “foreseeable future.” Death is everybody’s future. Dementia, like cancer, adds a degree of certainty to the measure of time … and it doesn’t really matter whether it’s ten months or ten years. Whether it’s cancer caused or dementia caused, the patient becomes most interested in the manner and timing of his/her death. The Supreme Court says an assisted death can be provided to avoid prolonged agony … and the timing becomes entirely a matter of personal choice.
Secondly: Legal precedents are in place and have been applied for more than thirty years and tested in all provincial and territorial courts. We simply need to ‘clean-up’ existing legislation.
End-of-life considerations begin with the preparation of a “Will” preferably in consultation with a lawyer. A Will has three basic components: a General notation of intent, a POA(Finance), and a POA(Health). POA is short for Power of Attorney and it begins with the name of your declared attorney, executor, or substitute decision maker(SDM) who will make all the necessary decisions for you in case of your inability.
With respect to health, your designated attorney has the lawful requirement to follow your stated wishes and must be consulted by health care providers with respect to any matter of your care. They(the providers) must keep your SDM informed and follow the directions as you specified in your POA(Health) – providing they are medically and legally sound. Obviously, you cannot predict every medical or health eventuality, so you must choose an attorney whom you trust absolutely to follow your stated intentions and provide instruction to the providers as you may do if you were actually consulted.
One established means to assist this process is recognized as a “Do Not Resuscitate” order. A serialized DNR form can be obtained from your physician and included in your POA(Health). In case of your incapacity, your SDM and all attending medical providers are legally required to follow the DNR absolutely.
Why can’t the legislators modify MAID to include an AR(Advanced Request) for medical assistance in dying in the same manner as a DNR? A person with dementia,while still cogent and rational …and not vulnerable, could obtain the AR form from the government, stipulate his/her SDM and the conditions for the administration of medical assistance in dying. The completed AR should (just like a DNR) be included as part of her/his POA(Health). An AR should have the same legal entitlements and requirements as a DNR.
Now what about this matter of “being protected” because I am “vulnerable.” According to the dictionary, vulnerable means “being susceptible to attack or wounding.” As previously acknowledged, as my dementia progresses, my mind and abilities shall diminish. Eventually, I shall become completely incapacitated and vulnerable. Fortunately, I have a significant period of time(maybe 10+ years) during which I am still able, cogent and capable of rational determination. I won’t need protection, I’ll need counsel, information and the necessary personal support to sustain my basic capabilities as long as possible.
Unfortunately, the misguided “protections” built into MAID erode both my confidence and capability. If I could be assured of a dignified death of my own choosing; if I could be assured my final days could be shared as good moments with my family and friends; if I could be assured that my final days would not be spent in a mindless ignominy of tears and hurt … then I would not waste my remaining capabilities with worry and fretting alone in the long hours of the night or in the corner of my room during the day. In reality, the unwarranted protections in MAID effectively accelerate the progression of dementia into vulnerability.
Fix MAID; remove the so-called protections, and allow me as person with dementia my full rights as a Canadian as defined by the Charter of Rights and the Supreme Court of Canada.
I am not vulnerable .. yet.
NOTA BENE: The number of people with dementia is significant – at the present time more than a half million in Canada and each year another 25,000 will be diagnosed. Dementia is one of the top ten diseases in Canada(more than breast/prostrate cancer combined).