Choosing Medical Assistance in Dying
Content warning: death, dying, medical assistance in dying
Today, the full film “In My Own Time” was released. I have wanted to attend an in-person screening but never made it to one.
This film “follows the emotional stories of people across Canada who chose to end their suffering through medical assistance in dying (MAID). Navigating this decision leads to life-affirming realizations with family and friends. Internationally recognized medical and legal experts explain why access to MAID is worth protecting.”
I watched it today and also heard from a dear friend struggling with grief for someone they knew accessing MAID. I feel such empathy. There is no one right answer here. No one right way. We have to each decide what is right for us each day and in the end. I respect those who feel it’s a moral issue they can’t support because of their beliefs or values.
Because of the timing of all of this today, I decided to write about what I learned and why I came to seek knowledge about MAID and how the idea that I can choose to end intolerable suffering actually brings me a sense of peace and allows me to live in the present moment with renewed joy instead of worrying about the future. I can’t speak for anyone else but me. I support the right to choose this option based on my own desire to do so, should I be faced with a serious incurable condition causing intolerable suffering.
In November 2023, I was suddenly and unexpectedly faced with contemplating my likely imminent death much sooner than I would have ever imagined, though after navigating my husband’s stage IV metastatic cancer diagnosis, treatments and palliative care with him as a caregiver in 2009, I was not surprised. It can happen to anyone, any time. We never know.
This post is to share and explain my thought process that resulted in seeking information on Medical Assistance in Dying in Canada, which is legal here but not everywhere. It has different names and qualifications in other parts of the world. Here is it not called assisted suicide or euthanasia.
I respect other people’s choices and values even if they may differ from mine on this topic. I ask that you do the same if you choose to read this. My values and choices are not up for debate.
In November 2023, I received results from an MRI that were “highly concerning for metastasis.” The nurse that delivered the news sounded sad and said she was sorry she didn’t have good news.
I pushed through Christmas shopping for my Hubby and Bestie that night and called work the next morning to say I wouldn’t be in until I had more understanding from the oncologist. While I waited for my appointment, I got to work learning more about Melanoma that has spread to the brain.
The first hit I found was from this article with a dismal prognosis of 4 month median overall survial:
“Brain metastases (BMs) occur in almost 50% of patients with cutaneous melanoma (CM) and are the third most common metastatic site [1,2,3,4]. These patients commonly experience a dismal prognosis with a 4 month median overall survival (mOS).” source: Internò V, Sergi MC, Metta ME, Guida M, Trerotoli P, Strippoli S, Circelli S, Porta C, Tucci M. Melanoma Brain Metastases: A Retrospective Analysis of Prognostic Factors and Efficacy of Multimodal Therapies. Cancers (Basel). 2023 Feb 28;15(5):1542. doi: 10.3390/cancers15051542. PMID: 36900333; PMCID: PMC10001111.
I had to prepare for the worst (an awful death in 4 months) and hope for the best (a mistake, a fluff on the image, a benign spot that had always been there?) and everything in-between. I had already been living since 2020 as if I only had a short time to live, making the most of every day since receiving my cancer diagnosis at the beginning of lockdown. It has been surreal at times.
The next three months off work were a whirlwind of full-time hours every day learning about Melanoma brain mets, getting my legal affairs in order, seeing a therapist purging, gifting and donating my belongings and crossing off some bucket list items like going to the Banff Hotsprings again. I stepped down from all my volunteer roles, deleted online accounts no longer needed, and pulled back from being social to focus on making meaning of my life. I attended patient support groups for other Melanoma patients, many of whom had advanced cancer. I also attended workshops on returning to work, financial planning, and some stress management workshops.
Exhausted from the mental anguish and existential grief, I slept a lot every afternoon and woke up multiple times every night, trying to plan for the worst and hope for the best.
Don’t get me wrong. I do have a healthy respect for life, and very much enjoy mine when times are good. I also experienced multiple adverse childhood events, and trauma from multiple forms of abuse from a former partner. I have read multiple medical studies showing that Autistic people and Queer people are more likely to die from choosing to unalive themselves than average. Depression and anxiety plagued me my whole life and were dismissed as trivial by family and doctors in my teens, 20’s and 30’s but are now medically managed and under control, but I lost my will to live during a time when I discontinued that medication while simultaneously becoming estranged from my birth family. I’m grateful for the support I received from my Hubby and Bestie, my extended family, my in-laws, my online Queer and Autistic friends who are like family and for trauma therapy (EMDR, ART, FJTTT and DBT skills). I learned that I am definitely not alone in these struggles and found others willing to share their stories, seek the perspectives of others who came through on the other side, and to give and receive peer support. I want to be very clear that I am not suicidal, nor was I when I started seeking information on MAID.
I was afraid of suffering in pain, of leaving ‘stuff’ for my loved ones to ‘deal with,’ of dying in my home and of leaving triggering memories for them. I wanted to be able to choose when I had endured enough and not spend my final days like the people I have already seen in the hospital crying out with nobody there for them, drugged on morphine to reduce their pain and suffering. The sight of skeletal bodies so thin and pale and bruised laying in bed mouth breathing laboriously with sunken cheeks and eye sockets. I don’t want that. I want to escape when I have had enough and there seems to be no way out. I want to be able to just turn off the light.
I’m not afraid of heaven or hell, judgement, angels or devils or god. I did try to believe in God and read the Bible and study other religions from A to Z. There were just too many arbitrary rules. Any time one man disagreed with a rule, he just started his own new religion. Women were rarely in positions of power, let alone treated with basic human decency. I’m agnostic. I’m in awe of the miracles in nature: the seed that grows into a tree, the random collision of two cells that grow into a sentient being and I don’t see how this much organized life can be random. So I suppose I believe in a higher power. But not one that watches me and judges me. My my it must be too busy for that. I think that’s just a way patriarchy and church control people like the Elf on the Shelf or Santa Claus that ‘watches’ and ‘knows’ if you are good or bad. I’m neither. I’m just doing the best I can with the knowledge, skills and life experience I have and so is everyone else I know, even those who use substances to numb the disconnect they feel. One thing that keeps me going is learning. I love learning about psychology, justice, minority rights, and finding one’s true authentic voice. So I turned toward that and focussed on that while waiting for results.
I wanted to know that there was a way out. An exit sign in case of fire in a movie theater. To know that I wouldn’t be trapped like the slaves in the bakery in Vesuvius with bars to prevent them leaving and that doubled as a prison.
A google search on MAID (medical assistance in dying) yielded the first bit of information but I wanted to know more so I asked my family doctor to refer me to a social worker. By the time I got that appointment, I had already learned everything I wanted to know from my own online searches, discussions with a cancer counsellor, and from the Dying with Dignity Site.
The most informational local resource I found was this webinar called “Regional spotlight: Death and Dying in Alberta.” It answered all my questions and allowed me to find peace in knowing that I could opt out of a prolonged painful awful inevitable death as long as I qualified. Having a terminal illness that doesn’t respond to medical treatment would qualify.
To qualify for MAID in Canada, you have to be an adult (18+), capable of making decisions, have a grievous and irremedial medical condition, have been informed of all means to relieve suffering including palliative care, and have voluntarily requested MAID. Grievous and irremedial means their condition is serious and incurable, in an advanced state of decline, causes intolerable physical or mental suffering that can’t be relieved in a way they consider acceptable. Source. The eligibility date for people suffering solely from a mental illness is March 17, 2027.
I have been living between worlds for months, having made peace with facing death some time between November and January, and also having inconclusive test results that needed to be repeated in January and April. Right now, I’m waiting for the next MRI at the end of April. If the results are good (and I hope they will be), aka if there is no change, I will begin a gradual return to work. I am mentally ready, but struggling with additional physical pain that I won’t go into here as I have had those symptoms dismissed most of my life and am awaiting additional testing to see where I’m at with it.
I’m so very grateful for the accumulated paid time off work (sick days) I had that allowed me time off to face mortality, research, learn, prioritize, organize, process and heal trauma and get to understand who I really am when I am no longer fawning and people-pleasing. I really like her and wish she had felt safer to come forward at any point in the past 50 years. Better late than never.
One life lesson I am learning from talking to the nurses, physiotherapists, home care workers, and occupational therapists supporting my in-laws in their 80’s and 90’s is that MY discomfort with them taking risks and possibly falling are not important. What is important is to honour and respect THEIR autonomy and their right to make THEIR own decisions as they are sound of mind. It has been a process over the past few years moving away from MY own fear and anxiety and protective feelings for THEM stemming from my own lack of access to medical care at times, and from watching my Hubby suffer and feeling so helpless when he was dealing with his own cancer. No amount of superstition or worry on my part will keep anyone else safe from potentially getting sick or hurt while living their lives the way they want. All it will do is make me burn out.I have to ask myself if I would want anyone making me stay home out of fear for my safety. No. Definitely not. Not now. Not ever. I need to afford them the same respect for their personal choices as I would others to respect my own decisions.
MAID Learning Resources
Here are some additional resources I found helpful that are specific to Canada and to Alberta where I live. You can see the differences from other countries in the Legislative Background: Bill C-7: Government of Canada’s Legislative Response to the Superior Court of Québec Truchon Decision.
Canada:
Medical assistance in dying: Support and resources
Navigating a request for Medical Assistance in Dying
Alberta:
Medical Assistance in Dying and other end-of-life options
How Do I Access MAID Services in Alberta?
How do I make a formal request for Medical Assistance in Dying in Alberta?
Other Important End of Life Considerations
Patients or Family Members MAID
Palliative and End-of-Life Care (What is it, Is it right for me, How do I get it?)
Palliative and End-of-Life Care for Albertans
Calgary
Documents
Personal Directive to name someone to make personal decisions for you in case you become incapable
Personal Directive Information Card
Edmonton Classification System for Cancer Pain
Videos
The truth about assisted dying (TEDxSurrey Talk) by Dr. Stefanie Green. She shares what she has heard and see what she has seen; to expose the empowering, life-reflective nature of an assisted death
#MAID
#MedicalAssistanceInDying
#MAIDinCanada
#Death
#Dying
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