Statement of Fact - Medical Assistance in Dying
This background paper is adapted from Alzheimer Society of Canada
Dementia is a progressive disease that will eventually lead to death. Because dementia is very different than other life-limiting illnesses, the needs of people with dementia at the end of life are unique and require special considerations.
Due to the progressive, degenerative nature of dementia, people with the disease will eventually become unable to make decisions about treatment and their own care. Family members and health care professionals often have to make difficult decisions on behalf of the person with dementia. People with dementia should be encouraged to make their wishes known to their family members (or a substitute decision maker in some provinces) when they are still capable. A written advance care plan can guide families when the person with dementia is no longer able to express their wishes for health and personal care decisions.
What is medical assistance in dying?
Medical assistance in dying (MAID) is the administration by health care teams (physicians, nurses, pharmacists and other health care professionals) of medications or substances to end the life of a person, at her/his request, in order to relieve suffering by hastening death. (Other terms used include physician-assisted death, physician-assisted dying, physician-assisted suicide, physician-hastened death, etc.)
What is the issue?
The significant outcome of the Supreme Court decision of February 6, 2015 is that medical assistance in dying will no longer be considered murder under the Criminal Code of Canada. It follows that a competent adult with enduring and intolerable suffering can request MAID by clearly consenting to terminate her/his life. BILL C-14; An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) passed into law May 30, 2016 with the requirement that a person be competent at the time of the act of medical assistance in dying.
Capacity and consent
While a person with dementia may not be deemed incapable to make decisions for herself/ himself immediately at the time of diagnosis, due to the progressive nature of dementia, specific skills will be lost during the course of the disease, including the capacity to consent to treatment including MAID. Therefore, a diagnosis of dementia does not necessarily render someone immediately incapable.
To consent - in this instance, to MAID - the person needs to be capable of retaining and understanding new information, analyzing the information and making an informed decision. According to current legislation, consent to MAID must be clearly expressed and voluntary, and the person’s ability to make decisions must be carefully assessed to ensure that he/she is able to understand the information provided and the consequences of making a decision to end their life. Bill C-14 passed into law with the additional requirement that, in order to consent to MAID, the person must be capable of retaining and understanding new information, analyzing the information and making an informed decision at the time that MAID is carried out.
All of these abilities (i.e. retaining, understanding and analyzing information and making informed decisions) may be impaired in people with dementia and consent will not be possible at the time of medical assistance in dying or throughout the mandated period of reflection (during which a person can withdraw her/his consent).
Given the progressive nature of dementia, wishes, values and beliefs may change, skills are lost and the ability to make decisions is often greatly reduced. As the law currently stands, MAID is only possible when a person is deemed competent at the time of MAID, therefore persons with dementia who lack decision-making capacity would not be eligible for MAID. Indeed, The Special Joint Committee On Physician-Assisted Dying (Parliament of Canada) has recommended “that the permission to use advance requests for MAID be allowed any time after one is diagnosed with a condition that is reasonably likely to cause loss of competence or after a diagnosis of a grievous or irremediable condition but before the suffering becomes intolerable”1 .
The Alzheimer Society believes that people with dementia need to be safeguarded as they will be extremely vulnerable at the end of their life. People with dementia may not have the capacity to make an informed decision and consent to end their life at the later stages of the disease, when in fact this is the very time when they would want the services of MAID.
In view of this information, the Alzheimer Society of Nova Scotia:
- Aims to reduce the stigma and stereotypes around Alzheimer’s disease and other dementias, stressing that living a satisfying life doesn’t end with a diagnosis and that is it possible to continue to live well with the disease.
- Urges people with dementia to make their wishes for their future care known, preferably through advance care planning as soon as possible after diagnosis. It's important the person with dementia have the opportunity for their individual/personal decision making and the opportunity to fully participate with sharing their "individual" plan reflective of their values, wishes and goals with their families (in particular their SDM/delegate) and care providers to ensure the best possible quality of life up to and including end of life.
- Calls for improved quality hospice palliative care that is available to all Canadians with dementia as they near the end of their life. The right to access quality palliative care will help minimize unnecessary suffering and improve the quality of dying for people with life-limiting illnesses.
- A dignified death for dementia patients: Who makes that call? André Picard, The Globe and Mail, published February 16, 2016; available at http://www.theglobeandmail.com/opinion/a-dignified-death-for-dementia-p…
- Life goes on after diagnosis of Alzheimer’s, Jim Mann, Vancouver Sun, February 12, 2016; available at http://www.vancouversun.com/opinion/letters/gravitational+waves+link+di…
For more information on advance care planning:
- Planning for the future, Alzheimer Society of Canada.
- Speak Up Campaign on advance care planning in