By: Lee Anne Davies
The world of Alzheimer's disease continues to experience a great deal of changes, ranging from social mores to legislation. Not only are people under the age of 65 living with the disease due to early diagnosis, but a more demanding generation, the baby boomers, are aging into their greater health-risk years.
Care for Alzheimer's is increasingly patient-centric. Fortunately, well-informed and caring people are challenging health and social care organizations to reconsider their approaches to behaviours, adult day programs, facility living and much more in order to protect the rights and dignity of those living with Alzheimer's.
Some of this change is taking place due to the increasing voice of those people who have received a diagnosis of Alzheimer's and who are instrumental in reshaping our approach to this disease. Over the next few years there will be no greater area of change in Canada than in our social conscience and our legal frameworks regarding end of life care and decision-making. You need to be aware of the current challenges and planned changes.
British Columbia courts and Alzheimer's
Putting your wishes in writing and communicating them to professionals and family is the current gold standard for protecting your wishes. However, it is not without problems, and this is best demonstrated through the Bentley case in British Columbia.
This is an extremely complex situation involving an 83-year-old retired nurse, her family and the health authority. A brief overview of this situation indicates that several challenges by Mrs. Bentley's family to the provincial health authority have taken place over the right to stop feeding her, respecting her wishes to not live with extreme mental or physical disability.
Regardless of your point of view, this is a disturbing situation because of the difficulty in interpreting Mrs. Bentley's wishes, even though as an informed health care professional she stated her wishes. This demonstrates how woefully unprepared our country is for severe health situations that arise and that you must be vigilant in sharing your thoughts on your end of life wishes with as many people as is possible to help protect your plans.
The changing Canadian legal landscape
With the federal election out of the way and the one-year deadline looming, there will be a greater focus on physician assisted suicide. The Supreme Court ruling set a legalization date of Feb. 6, 2016 (unless an extension is requested) in order to undertake more consultation and analysis. Andre Picard's article in the Globe and Mail provides an update on our country's process discussing many of the challenges surrounding the implementation of assisted suicide legislation, including the rights of physicians versus the rights of patients.
Quebec has already passed their Respecting End of Life Care bill (to take effect in December 2015), but it is unclear on how the assessment of a person's competency to choose will be undertaken in Quebec. At this point in time clarity on assessment is an important and missing key piece of information for people with a diagnosis of probable Alzheimer's or related dementias.
End of life decision-making cannot ignore money and estates
Money adds another dimension to decision making about end of life. Money can be viewed as a motive -- at least in some people's eyes. This means that someone who may be a beneficiary of an estate needs to be clear and transparent about their involvement in any discussions regarding end-of-life decisions.
My article in the Financial Post delves into some estate scenarios on personal finances when facing these decisions and the potential for subtle financial elder abuse. You need to be aware of these issues to protect yourself but also to protect others who could be accused of some irregularity after you pass away.
How to move forward when there are so many unknowns
There is no right answer regarding end of life care. Your personal choices will be interpreted within an increasingly volatile landscape of changing laws and changing interpretations of the laws alongside changes in our society's acceptance of end of life decision-making. Finding others who share in your experience with Alzheimer's may be helpful in creating your own plan.
This blog by Kate Swaffer in Australia is worth reading. Ms. Swaffer advocates for Alzheimer's care while also managing her own diagnosis. Ultimately, it is up to you and your loved ones to remain informed about the latest news in Canada on end of life. For as long as is possible, your voice needs to be clear and constant in order to help others understand how to best honour your choices.
Brought to you by the Alzheimer Society of Ontario.
This story was originally published in the Alzheimer Society of Ontario's newsletter as well as on alzlive.com, a website for caregivers of people living with Alzheimer's and dementia.
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