Changes needed to right-to-die legislation

The increasing incidence of dementia among our aging population has opened up the debate over the possible use of advance directives and Canada’s three-year-old right-to-die legislation.

The current law only permits medical assistance in dying if the patient is clearly terminal and if she is competent to give consent immediately prior to the procedure. But in New Brunswick, a person diagnosed with earlystage Alzheimer’s disease has launched a campaign to change the legislation to allow for the use of an advance directive for the right to die in the event the patient no longer has cognitive capacity or the ability to request a dignified death.

That would mean that, perhaps even years prior to death, you could say to your family or your doctor that in the case of a drastic cognitive impairment due to disease or accident, you would want to qualify for assisted suicide. It is time to open up this debate because more and more people are going to be in this situation.

Let’s consider some numbers. According to the Alzheimer’s Society of Canada, 564,000 Canadians live with dementia in Canada, of which about 60 per cent suffer from Alzheimer’s, the most common form. There are 25,000 new cases diagnosed each year and 56,000 being cared for in our health system. Two-thirds of dementia patients are women. It costs more than $10 billion per year to care for those in Canada’s health system.

Those numbers are about to skyrocket with nearly one million Canadians expected to be living with dementia in the next 15 years. Sadly, most types of dementia are progressive and irreversible. The risk of being diagnosed with dementia doubles every five years after the age of 65. To further complicate the challenge, most people with dementia have other chronic health issues. Nova Scotia’s population is one of the oldest in the country, and by 2030, there will be 100,000 more residents 65 years or older than there were in 2015.

I have observed some of these dementia patients while visiting my mother while she was in long-term care. It was not a pretty sight to see them in wheelchairs in the public areas of our long-term-care facilities, with no awareness of their surroundings.

I have a friend whose sister is in this situation. She no longer recognizes him or anyone else and she cannot do anything for herself. Given the choice earlier in life, she might have decided to issue advance instructions for ending her life in this situation. Now, she does not have this choice.

The cost of warehousing these patients is enormous. The emotional costs to surviving family members are even higher. My friend continues to visit his sister, even though she does not recognize him and cannot communicate. That commitment takes a toll. The guilt associated with such a routine is inevitable.

Changing our right-to-die legislation requires careful consideration, especially when it comes to the conditions under which a patient with cognitive impairment could be provided a dignified death. For starters, it would have to be clear that the patient has no awareness of their surroundings or is unable to respond to basic requests. Those with power of attorney would have to agree and medical confirmation would be required that the prescribed conditions have been met.

Perhaps such advance directives could include the specific conditions under which a person would consider their life not worth living.

The public appears to support advance directives. A poll released by Narrative Research this week indicates that threequarters of Atlantic Canadians support changing the law to broadening the use of advance directive provisions. What would you want in such a situation?