The challenges and beauty of supporting a loved one through MAID
Personal Stories | March 3, 2023 | Bonita Thompson
It was a beautiful sunny warm late August afternoon in 2018 when my husband Don died quietly and peacefully in our Ocean Park home. After years of suffering with increasingly debilitating illnesses, he chose to end his life on his own terms.
In the spring of that year when my 81-year-old husband’s health was in rapid decline (suffering from cancer and cardiovascular and respiratory illnesses), he started to talk about the end of his life. Over a decade younger, I was in full “cheerleader” mode, emphasizing how lucky we were to have the wonderful life we were living and to have access to the medical care he needed as he needed it.
One day his increasingly urgent chats about what he wanted turned into an argument. He was so frustrated with my lack of sensitivity to his preparation for death. After he retired to bed, I felt terrible. I realized I had been projecting all my fears on him and I hadn’t really been listening. I apologized—to his great relief—and started working with him to seek the result he wanted.
Don’s first attempt to get help was to ask his family doctor—always the best place to start if you have one. While his doctor was compassionate and supportive, he said he was unable to provide my husband with the advice he was seeking.
I realized I had been projecting all my fears on him and I hadn’t really been listening.
That response left us at a complete loss and feeling rudderless. We had both supported the notion of medically assisted death long before the Supreme Court of Canada clarified the legal right and had also supported the advocacy work of Dying With Dignity Canada. We called the Ontario office of the society and reached a compassionate and well-informed staff member. What a relief that was.
She answered all our questions, provided written and online documentation and information, and most importantly gave us the number of the MAID coordinator of Fraser Health Authority (FHA) in BC, our local health authority, who gave him the advice and assistance he needed to begin the application and MAID assessment process. At his request, the MAID coordinator made arrangements for the assessments to be conducted in our home.
For those considering MAID, the most worrisome and critical question is often whether they are even eligible to receive it. The legal requirements are very specific and onerous. My husband asked at the end of each assessment, “Did I pass?” His relief was audible when he received positive replies in each case.
As I had during all of his medical visits and treatments, my husband asked me to be present at both assessments and for the most part I sat quietly and just listened. I was able to provide some insight during the discussion about how my husband’s quality of life had been impacted by his health.
Late in the conversation both doctors made a point of asking me how I felt. I told them I was not ready to have him leave and wished he would wait longer but said I understood, however, that this was his personal journey—not mine. My husband, fully capable of making his own day-to-day treatment decisions, did not need my consent or agreement for his medical treatment nor should he need it then when requesting medical assistance in dying.
I have been asked whether he considered changing his mind after he had been approved for MAID. In the intervening weeks before the assigned date, I spoke to him several times about being able to change the date to a later time or changing his mind altogether.
On each of those occasions, he made it clear that he had made up his mind and that is what he wanted. When the doctors and nurse arrived at the appointed time, they asked him if he still wanted to proceed. I never had any misgivings or doubts about his intention but I was grateful he was given many clear opportunities to express doubts or to change his mind.
Don decided he wished to die at home with only me at his side. While I know of people who involved their family and friends in a special celebration of life, my husband wanted a very quiet and private time.
The engagement of family is a very individual matter, often determined by cultural or religious considerations and by the state of family relationships.
In our case my husband honoured our family by speaking to his children and my children about his decision and why he had made it. Thankfully they were fully supportive of his having this choice. His decision to give them the opportunity to prepare for his death was a gift of compassion and understanding. It allowed them the opportunity to express in words or actions what they needed or wanted to share before he was gone. And of course for those at a distance there were many loving thoughts exchanged by email. I know he was surprised by the outpourings and I am so pleased he was able to receive and appreciate them.
My husband honoured our family by speaking to his children and my children about his decision and why he had made it.
But if a person requesting MAID anticipates strong resistance from family, important end-of-life conversations may never take place —resulting in some cases of anger and disbelief at the surprising and unexpected event.
I have watched with dismay and compassion media stories of angry children, relatives or partners railing against a MAID death they did not know was coming – blaming everyone and suffering terribly. For some the pain of not being trusted to understand, of being seen as an obstacle or being excluded because the patient wants privacy must be overwhelming.
And for some close relatives who are aware of a pending MAID request it may be very difficult to accept the fact that they do not have a determining say or even voice in the final decision. It is the decision of the patient as long as they are capable of making their own health decisions; this is, in fact, one of the safeguards in the MAID process
If I may offer one piece of unsolicited advice to avoid or at least minimize some of this pain, keep the lines of communication open and encourage end-of-life discussions among family members long before a MAID decision is under active consideration. Dealing with the grief of losing a loved one is difficult enough as it is – burdening that grief with avoidable guilt or anger is so much worse.
And as for the MAID procedure in our journey, preparations were carried out quietly and efficiently in our kitchen as the nurse set up an IV in my husband’s arm in our bedroom. After confirmation again of my husband’s wishes and consent, the doctor administered a series of medications . . . one to numb the veins, one to induce sleep, and the last to stop his heart.
Focusing on Don’s face I remember how easily he just went to sleep with a slight snore and very shortly after, he was gone. As I write this, I feel my heart clutching with the recall of it.
Our much-loved poodle came round to my side, pushed her head under my elbow, and rested her chin on his arm. She knew he was gone. She kept vigil at the foot of the bed until the funeral-home people arrived, to quietly and with great tenderness, remove him from her care.
The nearly 3 weeks between the time my husband was approved for MAID and the afternoon he died were the longest and shortest I have ever experienced. I just remember being so very, very tired – I just wanted to sleep.
Although more frail, Don was not bedridden and continued to be a “take charge” kind of guy right to the end. Remarkably, a week before he died, he insisted I arrange a garage sale to clean out his stuff in the garage before he was gone.
I watched with growing despair as he purged our home of his personal belongings until the night before his death, when I was confronted with only one freshly pressed shirt and pair of pants hanging on his side of the closet. It took my breath away.
I am very grateful during those last weeks that we were able to speak often, comfortably and openly about what it would be like “after.”
He left this world with grace, dignity, and courage. I miss him.