Ernest’s story: Why MAID needs to be expanded

Content warning: This article contains mention of suicide. 

Imagine being pricked with a needle every second, in different places, all over your body. Imagine it happening for an hour. Now try and imagine that happening for a week. For most people, the idea is horrifying. Now try to imagine that that’s what a good day feels like.

Not just a good day, but the best of days. Try to imagine that you wish every day was like that, instead of what it usually feels like. Now try and imagine that going on for weeks. For months. For years. For a decade. For the rest of your life. How long would it be before you wished to be dead? For me, it took six years. Six years and more doctors’ visits than I can count. I tried everything every doctor I saw suggested, from medication, to special diets, to meditation and more. I tried more than two dozen treatments, none of which worked well enough for me to continue working. When I finally quit my job, which I loved, it was because I could no longer put a smile on my face every day and pretend I was okay, when every second I was in excruciating pain. By then, it had been several months since I had decided to apply for MAID. I quit my job in June of 2015, and waited for MAID to become legal so I could die. To say I was dismayed when the suspension of the Carter decision was extended by four months is an understatement. When Bill C-14 was passed and I was denied my right to MAID in June of 2016, I attempted suicide. I remember how scared I was that I would wake up again. Scared of waking up and being forced to live with the pain. I wasn’t scared of dying, I was scared of living.

• Related Post: Ernest’s story: I live in constant excruciating pain. But I don’t qualify for an assisted death.

It’s been four years since then, and the pain has only gotten worse. I’ve been hospitalized twice because of it, and have become more and more isolated to my house due to the increase in pain that going out brings. Even being driven to and from a city half an hour from home takes days to recover from. My world has shrunk drastically to the point that even before the pandemic I only made the ten minute trip to the nearest town once or twice a week. It has also become harder to focus on or remember things, both because of the pain and the numerous medications I’m on. Outwardly, I appear fine to most people, but on the inside I feel as if I’m only a husk of my former self. I no longer have hopes or dreams, save one: to end the pain. I used to have a great memory, and now, when the pain is really bad, I can’t remember what I had for breakfast, or if I ate breakfast at all. I’ve gone from reading one or two books a week to not having read any in years. It’s simply too hard to focus through the pain. To feel my mind slipping away bit by bit is far worse than the physical deterioration of my body. I’m still more than capable of making informed decisions regarding my health. None of the many doctors I’ve seen have questioned that, or even brought it up. It’s just that it takes an enormous amount of mental energy to function anywhere near the level I used to be at. It’s not so obvious to my family or friends, but I think that it’s because I’ve become so good at pretending to be okay, so used to hiding the pain so I don’t make them worry about me more than they already do. It’s getting harder and harder to hide the pain though, since it just keeps slowly getting worse.

When politicians talk about MAID legislation they talk about groups, or categories of people. They talk of those seeking a medically assisted death as “vulnerable”, and needing to be “protected.” They argue that more safeguards are needed. I have read countless personal stories of individuals who have been going through the process of accessing MAID, or who have been fighting to access it. While facing their own death, without exception, every one of them has shown far more strength and courage than I thought was possible. Every account and experience is different, but none of them seem vulnerable, or in need of protection. That, above all else, is what politicians have failed to grasp. MAID isn’t about groups of people. It’s about individuals. Individuals who are going through the most horrendous pain, and are forced to choose between prolonged suffering and ending their life. MAID isn’t a matter of whether or not we die; it’s a matter of how we die. Some people may choose to stay alive as long as possible based upon their beliefs and values. I respect that point of view. Others, like myself, feel we have suffered enough, and wish to end the suffering we feel, even at the cost of our lives. Deciding to request MAID can be an extremely difficult decision, particularly for those like myself who are in intolerable pain, but who could live for many years or decades before dying of natural causes. MAID, at its core, is about choice, and the ability to exert control over your own life and death.

• Poem: “A Glimpse of My Hell”: A DWDC supporter shares a poem about not being able to access MAID

Many arguments have been made against allowing MAID, some of which are born of valid concerns. I’ve listened to the arguments, and tried to see things from others point of view. However, I’ve yet to read an argument that proposes a solution to the reason why those like me have fought so hard to be able to die: unbearable pain. The vast majority (75%) of people who have accessed MAID in Canada also had palliative care. No one who requests MAID does so before first exhausting every available course of treatment. Personally, I’ve seen more than fifteen different doctors, including those from three pain clinics, whose specialties include rheumatism, neurology and psychiatry. I’ve tried more than two dozen treatments, from subcutaneous injections to medications; from acupuncture to exercise. I currently take forty pills a day, and nothing has come close to making my life livable. MAID isn’t a good option, it’s simply the only one left when all else fails. Some groups argue that life is sacred, and that it’s up to god who lives and dies. That argument has no merit, since the Canadian Charter of Rights and Freedoms grants everyone freedom of religion, which also means freedom from religion. If a person objects to the idea of MAID, no one is forcing them to choose it. They simply don’t have the right to impose their religious beliefs on those of us who do choose it.

Many were, and are, concerned that making MAID legal could result in “vulnerable” people being pressured into choosing to die. That concern, however, was addressed in Bill C-14, which stipulates that a person requesting MAID must be assessed by two different physicians or nurses, who must agree that the person is capable of giving “informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care” and “they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure”. For every argument against MAID, there is already a safeguard in place. As a country, we have trusted doctors and nurses to properly assess patients before administering treatments and surgeries. Discerning whether a patient can give informed consent has been left up to doctors and nurses for decades, and I see no reasons why we should abandon a system that has for decades safeguarded against people being coerced into medical treatments they don’t want. We trust medical professionals with our lives. Why can’t we trust them with our deaths?

In Bill C-7, the government has proposed additional safeguards for those whose death is not “reasonably foreseeable”. As in Bill C-14, they have failed to define what “reasonably foreseeable” means. The proposed safeguards place an additional burden upon those who are, by definition, “enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable.” The proposed legislation requires those like me, whose deaths are not reasonably foreseeable, to continue suffering for ninety days after the first assessment before accessing their constitutional right to an assisted death.

• Poem: “One Hundred Twenty Nine Thousand Six Hundred Minutes”: A poem about MAID eligibility under the proposed Bill C-7

No one applies for MAID on a whim. It’s a last option that is only sought-after long days and nights of agony, after spending weeks of deliberation. By the time you reach the point where you have submitted a written and witnessed application for MAID, you have already suffered long enough. Requiring an additional three months of waiting is cruel. Requiring that a person is assessed by a specialist* makes a difficult process even harder, particularly if the person applying lives in a remote area. It can already be difficult to find doctors who are willing to perform assessments, let alone one who is a specialist, particularly if, as in my case, there is no such specialist. Choosing to die is an incredibly difficult and personal decision. It doesn’t need to be made any harder. It’s never the first choice, or the second. It’s a last choice that’s made when all else has failed. The government has failed by condemning those of us who are suffering with no end in sight to continue suffering, still without an end in sight. They failed when they passed Bill C-14, and are continuing to fail by not amending it. Passing a law allowing medical assistance in dying is hard. Living in constant, ever increasing pain for over a decade is harder. It’s my life. Let me choose to end it. In the words of Sue Rodriguez, “If I cannot give consent to my own death, whose body is this? Who owns my life? Whose life is it, anyway?” –

– Ernest Frederiksen

*Note from DWDC: During the CBC MAID Town Hall in July 2020, Justice Minister David Lametti clarified that the expert assessment for MAID no longer requires a specialist, but rather a practitioner with “some level of expertise in the condition.”