In this blog post, Liana Brittain outlines why she believes advance requests must be permitted under Canada's assisted dying legislation. She writes about what it was like caring for her mother, who had dementia, and reflects on how her husband, Paul, had to access assisted dying early before he could lose capacity and be deemed ineligible under the law.
Recently, I was one of two guests on the CBC radio call-in show, Maritime Noon, hosted by Norma Lee MacLeod. We were discussing the topic of advance requests and their use when people are making end-of-life choices. It was one of several opportunities I’ve had since my husband chose medical assistance in dying (MAID) at the end of his life, five months ago. Whether it’s television, radio or the press, afterward there are always so many things I wish I had said! So, I’m going to attempt to address some of those unspoken thoughts that I didn’t have the opportunity to share on other occasions.
- More from Liana: DWDC was the lifeline I needed after my husband's assisted death
- More from Liana: How assisted dying has changed the way Canadians experience death
Let me start by saying that I genuinely appreciate the opportunity to publicly discuss end-of-life issues. It is both a privilege and responsibility to represent the patients who, like my husband Paul, chose MAID at the end of their life, and their families who have both respected and supported their wishes. These are not easy decisions that are made lightly. They require days and weeks, perhaps even months or years, of discussion about quality of life and ultimately our deaths. Each person is unique and views these issues from their own perspective based on their cultural norms, spiritual beliefs and life experiences. As loving members of a family or friends from their community, it is our role to respect the individual’s right to choose, whether it is something with which we’re personally comfortable or not. It’s all about them, their quality of life and their death. It’s not about what we would want for ourselves when the time comes. We cannot possibly know what physical and mental pain they have had to suffer through to come to the decision they have made. This is their life, their body, their choice. We must respect that. It is their legal right.
Arguments and counterarguments
It has been suggested by some experts that an individual suffering from one of the many diseases that impairs the brain’s ability to function and thereby reduces their mental acuity and cognizance, should not be allowed to state in advance that they wish to access the MAID procedure later by making an advance request, medical power of attorney, or medical proxy. The rationale behind this opinion seems to be that the patient cannot know what their life will be like when they reach that stage of their illness. However, in my opinion, medical science has clearly defined the symptoms and progressions of well-known diseases. With personal research and the guidance of a physician, nurse practitioner or social worker, the patient can understand, from the onset of the disease, the probable journey they are facing. Armed with this information, I believe that a patient can reasonably project what their future will hold and how they wish to approach that reality. At that point, I think the patient should be allowed to state their end-of-life wishes in writing for future reference.
- Related: 8 in 10 Canadians support advance requests for assisted dying
- Related: An employee at a long-term care facility shares why she supports advance requests
Another argument put forward is that the patient’s values may change and they will no longer be who they once were. I think this argument misses the point. Of course, they’re not who they once were. The physical body and brain function changes because it is diseased. It becomes damaged to the point where it no longer functions normally. If you define who a person is by what they think, feel and believe, then the issue is altered dramatically. When the physical body, including the brain, is ravaged by illness to the point where it is unable to function as it did when the person was healthy, then all the patient is left with is a shell – a body that reacts on a very instinctual level
If you have lived with and cared for a person with a disease such as ALS, advanced multiple sclerosis, dementia, Alzheimer’s or Huntington’s to name but a few examples, you have experienced the heartbreaking transition your loved one goes through as their mind is destroyed. They slip farther from you each day until eventually, they no longer exist. Yes, the body is still there, but the person you knew and loved is gone and can never return. I lived this as I cared for my mother over several years until her death at home. She suffered from stroke-related dementia and Alzheimer’s disease. My mother became simply the husk of the former vibrant, dynamic, intelligent, social individual she once was. Her body was alive, but her mind and spirit had been sucked out of her. She was not my mother any more. In her place was a fearful, compliant, smiling person who could not grasp her own reality. This was certainly not what she had wanted as evidenced by the fact she had a Do-Not-Resuscitate order in place and had refused to ever be transported to the hospital again for any reason. There was no MAID for her to consider three years ago, but she often expressed the desire for her life to be over. She felt like a burden and was horrified that she could no longer do the things she had once loved. No matter how far she slipped away from me, I knew it was not her wish to be exposed to the indignities she was when she could no longer care for herself. We must respect the wishes of the informed individual who is still cognizant at the time they state in advance their end-of-life choices. It is hubris to do anything else.
- More from Liana: Will I have access to assisted dying?
- More from Liana: What I learned about MAID and myself at an end-of-life conference
In addition, I have heard it said that some patients appear happy and content in advanced stages of diseases that impact cognizance, so why would they be allowed to end their lives because of an advance request that states their wishes to do so? Again, I must disagree. In my opinion, we cannot know what another person is thinking or even if they are capable of rational thought. Outward impressions can be very deceiving. Take me for example. I live with chronic pain. There is not one minute of one day in the last 20 years I have not suffered from some degree of pain. I am unable to take standard medications to control the pain because of other medical issues, so when you meet me, you don’t know that I’m suffering or to what degree. You can’t see my pain. It’s invisible.
People often say to me, “You look wonderful!” When you meet me and I smile pleasantly and greet you politely, when I laugh at your jokes perhaps because it’s the socially acceptable thing to do and I don’t want to appear unsociable, when I listen attentively and react compliantly because you oversee my life or my job, do you really see the pain I’m in? Do you have any idea what’s really motivating me to appear to be happy and enjoying the experience? Do you honestly think you can judge the quality of my life by the outward signals I’m giving you? I think not. So how is this any different from the patient who appears to be happy, compliant and accepting of their life when they are no longer cognizant? Isn’t it more reasonable to accept that when the individual was cognizant and could make informed choices, they knew this was not quality of life for them and they wanted to die with dignity?
Join the conversation
Today, I have stated my thoughts and opinions about one facet of the advance request conversation. It’s a very complex issue with many angles and curves. Having said that, I do believe that Canada has become an intricate, sophisticated society, and as a result, we can resolve this issue successfully and find ways forward that will meet the needs and wishes of the vast majority of the population.
In mid-September, at the Second International Conference on End-of-Life in Halifax, I learned that 20 years of research from countries like the Netherlands, Belgium and the state of Oregon, where medically assisted deaths have been legal for many years, have shown us that there is no slippery slope for vulnerable populations in our society. Let us respect the wishes of those informed patients who wish to make advance requests while they are still cognizant. Relieve the stress and mental anguish created by the fear that they will have to end their lives early to be compliant with the law, as my husband did. Let these patients enjoy what time they have left with peace of mind knowing their lives will unfold as they would have wished. Please join the conversation. Express your opinion on whether or not advance requests, medical powers of attorney or medical proxies should be allowed to guide the family and medical community in the patient’s end-of-life choices. Let it be their legal right.
Liana Brittain provides dual advocacy for chronic pain and medical assistance in dying. She is also the architect of the Living in Pain Successfully program. She has written about her chronic pain in her book, A Gentle Warrior.