Andr茅e McGrath is living B次元官网网址渁 really wonderful life.B次元官网网址
She and her husband of 49 years, Rick McGrath, live in Kanata, Ont., where they golf, take walks and laugh loudly and often. They travel south for the winter and adore their two grown-up sons.
After the 68-year-old was diagnosed with AlzheimerB次元官网网址檚 disease about a year ago, she cried.
B次元官网网址淎 lot, a lot, a lot B次元官网网址 I cried,B次元官网网址 McGrath said in a phone interview, choking up.
B次元官网网址淚 have a wonderful marriage and I frankly wish I had, you know, 20 years of good health, 20 more years to enjoy it,B次元官网网址 she said.
McGrath is determined to keep doing the things she loves. When the time comes that she canB次元官网网址檛, she said, she wants a medically assisted death.
B次元官网网址滻 am so in favour of MAID. WeB次元官网网址檝e already talked to our family doctor about it and he said, B次元官网网址榳ell, weB次元官网网址檙e not there yet.B次元官网网址 So he knows that his hands are tied,B次元官网网址 she said.
As of Wednesday, people with dementia in Quebec are allowed to make advance requests for MAID, before they lose the capacity to provide informed consent. But such requests are still illegal under the Criminal Code.
B次元官网网址淚f we could do that in Ontario, IB次元官网网址檒l probably be one of the first ones to line up and sign it,B次元官网网址 McGrath said.
After caring for her mother and grandparents in the late stages of AlzheimerB次元官网网址檚 disease years ago and watching them forget who she was, McGrath is determined not to let her own dementia progress that far.
B次元官网网址淭hatB次元官网网址檚 really heartbreaking,B次元官网网址 she said.
The federal government has said it still needs to do more consultations, which will start in November, before making a decision about advance MAID requests in the rest of the country.
The Alzheimer Society says people with dementia should have the right to request medical assistance in dying in advance B次元官网网址 but it must not be a replacement for high-quality palliative care.
B次元官网网址淧eople with a diagnosis of dementia deserve the same rights as everyone else. So if MAID is a legal end of life option for people, then we believe that it should be accessible to people with dementia,B次元官网网址 said Cathy Barrick, CEO of the Alzheimer Society of Ontario, in an interview.
But itB次元官网网址檚 important to make sure patients also have the option to receive dementia-specific, comprehensive palliative care that would provide the best quality of life possible, she said.
B次元官网网址滺aving a choice between sort of feeling like youB次元官网网址檙e going to languish and be neglected (in a long-term care home) B次元官网网址 itB次元官网网址檚 really no choice at all,B次元官网网址 Barrick said.
B次元官网网址淲e wouldnB次元官网网址檛 want people to make a decision to end their life prematurely out of fear of what might happen. So obviously a lot of our advocacy is around making sure that people have options available to them at end of life.B次元官网网址
The challenge with AlzheimerB次元官网网址檚 disease and other forms of dementia is that itB次元官网网址檚 hard for someone to predict how they will feel at a later point in time as their disease progresses, Barrick said.
In signing an advance request for MAID, patients would need to communicate multiple specific circumstances that would have to happen in order for them to have MAID in the future, such as not being able to recognize family members and being unable to communicate.
B次元官网网址漈he first and the most important thing is for them to make their wishes known and they need to be abundantly clear about what those wishes are,B次元官网网址 said Barrick.
B次元官网网址淚t needs to be extremely specific, you know, not something vague of like, B次元官网网址榳ell, if it seems like IB次元官网网址檓 suffering, you know, do it then,B次元官网网址橞次元官网网址 she said.
Dr. Samir Sinha, geriatrician and clinician scientist with Sinai Health System and University Health Network in Toronto, said itB次元官网网址檚 critical to have a family member or friend to serve as an advocate to ensure their loved oneB次元官网网址檚 wishes are carried out in the spirit they were intended.
B次元官网网址漎ou might say, B次元官网网址榠f I end up in a state where I cannot recognize my own family members, I would consider that intolerable suffering. So I would want someone to end my life at that point,B次元官网网址 said Sinha, who served on a federal subcommittee looking at the issue of advance requests for MAID.
But three or four years later, the patient might be at the point where they donB次元官网网址檛 recognize their family members, yet B次元官网网址測ou go in to see the person and, you know, there they are smiling and happy to see you. They donB次元官网网址檛 know who you are, but they seem to be content. They seem to be happy,B次元官网网址 he said.
B次元官网网址淎nd then the question is, what do you do then?B次元官网网址
Among the several conditions that have to be met in order for a person to obtain medical assistance in dying following an advance request in Quebec is that the person is B次元官网网址渆xhibiting, on a recurring basis, the clinical manifestations related to their illness and described in their request,B次元官网网址 and that a physician or specialized nurse practitioner has cause to believe B次元官网网址渢he person is experiencing enduring and unbearable physical or psychological suffering,B次元官网网址 the provinceB次元官网网址檚 website says.
ItB次元官网网址檚 also important that advance requests for MAID B次元官网网址渁re not considered kind of a B次元官网网址榦ne and doneB次元官网网址 thing,B次元官网网址 Sinha said.
When people are first diagnosed, itB次元官网网址檚 B次元官网网址渁bsolutely devastating,B次元官网网址 he said, and they may have very specific ideas of what circumstances they donB次元官网网址檛 want to live with down the road.
But B次元官网网址渄ementia is a journey that can carry on for years,B次元官网网址 Sinha said.
B次元官网网址淐are needs and preferences will evolve with time,B次元官网网址 and patients should regularly revisit their advance requests with their caregivers to ensure the condition under which they would want MAID are still the same, he added.
Barrick emphasized that a diagnosis of AlzheimerB次元官网网址檚 disease or other forms of dementia B次元官网网址渋s not the end,B次元官网网址 noting that although everyone is different, people generally live five to seven years after learning they have it.
B次元官网网址淔or most people, most of that time can be quite positive,B次元官网网址 she said.
B次元官网网址淧eople go on to continue on with their life. Some people can continue to work, travel, socialize B次元官网网址 all the things (that)have meaningful engagement in their life.B次元官网网址
Having MAID as an option for when they deteriorate can actually provide reassurance and removes a worry that allows some people with dementia to live their lives as well as possible, Barrick said.