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Alzheimer Society supports advance MAID requests in cases of dementia

But advocates say option should not come at the expense of high-quality palliative care
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Dr. William Burke goes over a PET brain scan at Banner Alzheimer91裸聊视频檚 Institute in Phoenix, Aug. 14, 2018. THE CANADIAN PRESS/AP-Matt York

Andr茅e McGrath is living 91裸聊视频渁 really wonderful life.91裸聊视频

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 Alzheimer91裸聊视频檚 disease about a year ago, she cried.

91裸聊视频淎 lot, a lot, a lot 91裸聊视频 I cried,91裸聊视频 McGrath said in a phone interview, choking up.

91裸聊视频淚 have a wonderful marriage and I frankly wish I had, you know, 20 years of good health, 20 more years to enjoy it,91裸聊视频 she said.

McGrath is determined to keep doing the things she loves. When the time comes that she can91裸聊视频檛, she said, she wants a medically assisted death.

91裸聊视频滻 am so in favour of MAID. We91裸聊视频檝e already talked to our family doctor about it and he said, 91裸聊视频榳ell, we91裸聊视频檙e not there yet.91裸聊视频 So he knows that his hands are tied,91裸聊视频 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.

91裸聊视频淚f we could do that in Ontario, I91裸聊视频檒l probably be one of the first ones to line up and sign it,91裸聊视频 McGrath said.

After caring for her mother and grandparents in the late stages of Alzheimer91裸聊视频檚 disease years ago and watching them forget who she was, McGrath is determined not to let her own dementia progress that far.

91裸聊视频淭hat91裸聊视频檚 really heartbreaking,91裸聊视频 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 91裸聊视频 but it must not be a replacement for high-quality palliative care.

91裸聊视频淧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,91裸聊视频 said Cathy Barrick, CEO of the Alzheimer Society of Ontario, in an interview.

But it91裸聊视频檚 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.

91裸聊视频滺aving a choice between sort of feeling like you91裸聊视频檙e going to languish and be neglected (in a long-term care home) 91裸聊视频 it91裸聊视频檚 really no choice at all,91裸聊视频 Barrick said.

91裸聊视频淲e wouldn91裸聊视频檛 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.91裸聊视频

The challenge with Alzheimer91裸聊视频檚 disease and other forms of dementia is that it91裸聊视频檚 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.

91裸聊视频漈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,91裸聊视频 said Barrick.

91裸聊视频淚t needs to be extremely specific, you know, not something vague of like, 91裸聊视频榳ell, if it seems like I91裸聊视频檓 suffering, you know, do it then,91裸聊视频91裸聊视频 she said.

Dr. Samir Sinha, geriatrician and clinician scientist with Sinai Health System and University Health Network in Toronto, said it91裸聊视频檚 critical to have a family member or friend to serve as an advocate to ensure their loved one91裸聊视频檚 wishes are carried out in the spirit they were intended.

91裸聊视频漎ou might say, 91裸聊视频榠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,91裸聊视频 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 don91裸聊视频檛 recognize their family members, yet 91裸聊视频測ou go in to see the person and, you know, there they are smiling and happy to see you. They don91裸聊视频檛 know who you are, but they seem to be content. They seem to be happy,91裸聊视频 he said.

91裸聊视频淎nd then the question is, what do you do then?91裸聊视频

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 91裸聊视频渆xhibiting, on a recurring basis, the clinical manifestations related to their illness and described in their request,91裸聊视频 and that a physician or specialized nurse practitioner has cause to believe 91裸聊视频渢he person is experiencing enduring and unbearable physical or psychological suffering,91裸聊视频 the province91裸聊视频檚 website says.

It91裸聊视频檚 also important that advance requests for MAID 91裸聊视频渁re not considered kind of a 91裸聊视频榦ne and done91裸聊视频 thing,91裸聊视频 Sinha said.

When people are first diagnosed, it91裸聊视频檚 91裸聊视频渁bsolutely devastating,91裸聊视频 he said, and they may have very specific ideas of what circumstances they don91裸聊视频檛 want to live with down the road.

But 91裸聊视频渄ementia is a journey that can carry on for years,91裸聊视频 Sinha said.

91裸聊视频淐are needs and preferences will evolve with time,91裸聊视频 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 Alzheimer91裸聊视频檚 disease or other forms of dementia 91裸聊视频渋s not the end,91裸聊视频 noting that although everyone is different, people generally live five to seven years after learning they have it.

91裸聊视频淔or most people, most of that time can be quite positive,91裸聊视频 she said.

91裸聊视频淧eople go on to continue on with their life. Some people can continue to work, travel, socialize 91裸聊视频 all the things (that)have meaningful engagement in their life.91裸聊视频

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.





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