How my husband and I documented our end-of-life wishes – and why it’s so important

Donna and Ian McArthur married in 1975. They both had fulfilling careers as high school teachers and have been strong advocates for advance care planning. Their story highlights the importance of documenting your end-of-life wishes, and reinforces the need to lift the ban on advance requests for medical assistance in dying (MAID) in Canada.  

Update from Donna: 

Ian passed away after 3 months in hospital on January 3, 2021, with myself and our son by his side. Due to the archaic legislation, Ian experienced an horrific struggle with the cruel and ‘irremediable disease’ Alzheimer’s, and my family and I suffered from emotional, mental and physical distress. It was a terrible experience and I don’t want others to have to endure the same thing.

Whatever the term(s) may be – advanced consent, advanced request, personal directive, a video or audio with one’s wishes expressed when they have capacity – those instructions must be honoured; not in two years but immediately.

With much sadness,

Donna McArthur and Family

Eight years ago, our daughter in-law lost her father to Alzheimer’s. He had been living for many years in a secured unit, and the family was deeply affected by this cruel and fatal disease. Ian and I couldn’t help but wonder, “What if this happens to one of us?”

Having previously watched as both of our grandparents and parents wasted away until death, unable to communicate, we wanted to avoid the same fate for ourselves. As a result, we made a point throughout our marriage to openly discuss our wishes with family and friends.

Over time, we learned more and more about planning and documenting our wishes. We wrote our own wills and learned terms like Power of Attorney and Personal Directives.* We had everything in place, our documents signed by our witnesses, when the moment of truth arrived.

My husband Ian was taken to the Emergency Room with an Abdominal Aortic Aneurysm (AAA) and required emergency surgery. He was found to be high risk for heart failure and suffered a massive heart attack after the operation. For over a year, we saw specialist after specialist and underwent numerous tests, to learn that Ian had the onset of dementia.

At that time, very few of our family members and friends had ever thought about writing a Personal Directive. While difficult, we continued to have these important discussions with our loved ones and Substitute Decision-Makers.

In 2016, we made the decision to consult a lawyer for assistance in writing our wills and Personal Directives while Ian still had capacity. I handed in my resignation at work in order to spend time with my beloved. Eventually, Ian was diagnosed with Alzheimer’s.

In October 2019, he was admitted to a secured facility, but after having experienced a highly-reactive episode, he was sent to the Emergency Room at a hospital in Calgary. I need to honour his wishes within his Personal Directive, but we are facing barriers due to limitations in Canada’s assisted dying law.**

I speak constantly with friends and family. I advocate on behalf of dying with dignity and the necessary changes in legislation. We need to address the ban on advance requests for Canadians living with Alzheimer’s and dementia. People are suffering, and their loved ones are deeply affected emotionally, psychologically, and physically.

Within our Personal Directives, Ian and I wrote: “If we do not have the mental capacity to communicate with our loved ones, everything meaningful in our life has passed and we request not to prolong life.” I very sincerely hope I can honour my husband’s wishes soon.

– Donna McArthur

Notes from Dying With Dignity Canada:

* The name for an Advance Directive and the term used for a Substitute Decision-Maker are different depending on the province or territory in which you live. Personal Directive is the term used in Alberta, where Donna and Ian reside.

** The current laws of Canada do not allow people to make an advance request for MAID in their Advance Directive. Learn more.