Let's Talk Medical Assistance In Dying

medical-assistance-in-dying Let's be real. Medical assistance in dying is a highly divisive, extremely sensitive, and deeply personal issue to contemplate personally and discuss openly.

For these reasons and for the simple fact that I always hesitate to consider myself an authority on a subject who knows unquestionably that I am right (I never feel that I am right; it's all about personal perspective and how one's unique life experiences have shaped that perspective, isn't it?), it makes me very nervous to voice my own thoughts on the matter. It's especially nerve-wracking coming from a highly conservative, Roman Catholic upbringing where I personally know people who would judge me for not immediately forbidding medical assistance in dying.

However, it's an issue that I've debated in my mind many times over the past six years of this full-time chronic illness journey and now seems like the right time to finally put thoughts to digital paper. Currently, until January 27, 2020, the Federal Government of Canada is requesting public input on Medical Assistance in Dying (MAID) with respect to its eligibility criteria, request process, and safeguards before the government begins its own review in 2020 to determine if any changes should be made.

Info from the Federal Government of Canada

(You can fill in the questionnaire prior to January 27, 2020):

"Medical assistance in dying (MAID) became legal in Canada in June 2016. During the development and implementation of MAID (Bill C-14) in 2016, many Canadians voiced their support for broader access to MAID. As a result, the Government of Canada committed to study a wider variety of medical circumstances where a person may want to access MAID.

Specifically, the Government of Canada asked the Council of Canadian Academies to study three complex issues including requests for MAID by mature minors, advance requests, and requests for people where mental illness is the only reason for requesting MAID. The reports and a summary are available on the CCA’s website.

As legalizing medical assistance in dying was a significant step for Canada, Parliament committed to reviewing the law five years after it was passed. This review will provide the opportunity to hear from Canadians about how MAID is working, and to see if any changes should be made. It is expected that this review will start in 2020.

On September 11, 2019, the Superior Court of Québec found (Truchon v. Attorney General of Canada) that it was unconstitutional to limit access to MAID to people nearing the end of life. The case was brought by two persons living with disabilities, Mr. Truchon, who has lived with cerebral palsy since birth, and Ms. Gladu, who has lived with paralysis and severe scoliosis as a result of poliomyelitis. Practitioners who assessed them were of the view that they met all eligibility criteria for MAID, with the exception of nearing the end of life. The Court declared the “reasonable foreseeability of natural death” criterion in the federal Criminal Code, as well as the “end-of-life” criterion in Quebec’s provincial law on medical assistance in dying, to be unconstitutional.

The Court’s ruling will come into effect on March 11, 2020, unless an extension is granted by the Court. While this ruling only applies in the province of Quebec, the Government of Canada has accepted the ruling and has committed to changing the MAID law for the whole country.

Since MAID has been legalized, more than 6,700 Canadians who were suffering unbearably chose to die peacefully with the help of a physician or nurse practitioner. Over the past four years, our health care systems have become more familiar and comfortable with providing MAID, and Canadians have also learned a lot about circumstances where MAID is not allowed.

As we prepare to launch the full review of the MAID law this summer, the Government of Canada is moving quickly in the shorter term to help inform our response to the recent Quebec court ruling. Updating Canada’s MAID law will expand eligibility for MAID beyond people who are nearing the end of life, and could possibly result in other changes once the review is complete. This questionnaire offers Canadians the opportunity to share their views with the Government of Canada on this deeply personal and very important issue."

Some context to my thoughts

Some of you have asked what my own view on MAID is but before I share that, I think it's important for you to have context. There is so much that goes into my personal debate on this issue, more than I have the energy to fully elaborate on. However, in brief, my own views on MAID have been especially influenced by:

  • my own personal experience with debilitating chronic disease
  • my own personal experience with mental illness and suicide ideation
  • immersing myself in and exposing myself to (on a daily basis) the real-life experiences of other people who are suffering more than the average person could ever imagine or possibly understand because of chronic illness in combination with the lack of adequate, proper, and/or compassionate medical care in our broken health care system
  • knowing what it is like to lose a relative to suicide and the widespread, traumatic impact suicide has on the community of people around that deceased person
  • watching another relative be condemned to an existence that no reasonable human being would want for themselves following a stroke that left this person paralyzed on one side of the body, requiring full-time care in a hospice, and essentially having to wait out the years of progressive decline with minimal quality of life and zero independence until they finally died

If you're going to voice an opinion

While I very much continue to debate the pros and cons of MAID, this is what I firmly believe when it comes to people voicing their opinion in such a way that it has a tangible impact on the outcome of another human being's life (ie. affecting the laws that will determine a person's access to medical assistance in dying):

  • Employing fear-mongering tactics to sway public opinion is unacceptable, disgraceful, and should be discredited as a valid argument
  • Defaulting to religious views (and imposing those views) should not supersede the full employment of critical thinking skills that take into consideration a full analysis of facts, evidence, studies, the multitude of variables that come into play, and consideration of what actual human beings are having to endure
  • If you're going to assert an opinion such that it affects a country's law and the lives of actual people, make sure that it is a well-rounded, researched, educated opinion and that you've gone outside your own bubble of limited experience to see what other people are having to experience

So what do I think?

I do not take this issue of electing to die via MAID lightly. Even though I have wanted to end my own suffering in the past, I am currently someone who is fully committed to life. I am someone who wants a person to fully consider every possibility of remaining alive before considering the option of elected death.

And I firmly believe that just because I wouldn't consider MAID for myself at this point in time, it does not mean that my personal decision should eliminate MAID as an option for another person. The agency I assert over my own life should not restrict the agency that another person has over their own life, especially when it comes to having to endure unending, irreversible, and extreme suffering.

Those against MAID say...

These are some common opinions or arguments that I've seen that stand in opposition to permitting the legalization of MAID and some thoughts I have with respect to them (they're not necessarily my counter-arguments but additional facets to consider):

"If you let this happen, everyone will choose to commit suicide!"

This is literally a comment I've seen over and over again on social media or in the comment section of news articles and, quite frankly, I call bullshit. This is fear-mongering. This is catastrophizing and hyperbolic. This is an ignorant claim that is based on no evidence.

I also think this discredits the fact that our instinct to survive is one of humankind's most powerful and hardwired drives. Just because the option is there, does not mean that everyone will make use of it.

I have spoken to and heard the thoughts of a lot of sick people who have debilitating illnesses. Many of these illnesses currently have no effective treatment because the research isn't there. Many put the person on a trajectory of deterioration in terms of functional capacity and quality of life. Many lead to the irreversible damage of organs, nerves, muscles, etc. It's not that these people want to die. If they could have it their way, they would want to LIVE, live the lives that others are getting to live with the ability to have careers, social lives, families, and vacations. But that is not the reality that is available to them. They don't want to die, they want the unbearable suffering to end.

"People shouldn't need MAID when there are hospices and palliative care."

Yes, I agree that our society has both. But this simplistic argument fails to consider actual availability (such as limited space), the quality of life and the quality of care that is actually given at some of these facilities, whether a person or their family can afford these facilities, and the fact that there are barriers to entry that would make this inaccessible to many. For instance, depending where you live, eligibility criteria requires a prognosis that a patient is facing imminent death within six months.

This argument doesn't take into consideration that there are people who aren't necessarily at end-of-life but are facing chronic, irreversible, untreatable suffering and such a life to them isn't one worth living.

"It's a slippery slope."

The argument here is that legalizing MAID in the first place for the terminally ill will lead to lower and lower standards and more lax criteria to the point where anyone can be euthanized, including children and anyone that society views as useless or a waste of space.

In this case, I can't profess to know the future outcome of any decision that is made today. Instinctively, this feels like an extreme viewpoint when taking into consideration that our society here in Canada is also comprised of intelligent citizens who, I would hope, would ensure that this doesn't happen. There are many safeguards to this process of applying for MAID for a reason. There is also a reason why governments commit to reviewing policies and processes.

I'm not sure that fear of the unknown in a future that may never happen is enough of a reason to sentence people today to unending suffering and deny them compassion, dignity, and the right to make the most important decision regarding their own life.

"It violates every doctor's obligation to do no harm as stated in the Hippocratic Oath."

Yes, doctors are there to help, reduce suffering, and preserve life to the best of their ability. And I know there are many good doctors out there who do this. However, if you've never been seriously ill, then you may not be aware of this harsh reality: there are doctors who cause harm anyway today in their practice. If you spend enough time listening to the real experiences of severely or chronically ill patients with the health care system and specific doctors, you will be exposed to an alarming volume of incidents where doctors have been negligent and abusive in the patient's care, mismanaged cases that result in life-altering symptoms and disabilities for patients, and engaged in gaslighting their patients. So this Hippocratic Oath is being violated anyway.

In some cases, I feel like it is doing more harm to the person to force them to live with their suffering than assist them in a dignified death if that is what they have decided is best for them. Granting them a peaceful, compassionate death seems like one of the most caring things that a physician can do for a patient in certain situations.

I think each physician should get to exercise their right to choose whether or not they are willing to perform MAID. There are doctors who absolutely believe in MAID. And there are those who don't. Those that believe in it are the ones that can perform it.

"People will be pressured into choosing MAID by loved ones."

Part of this argument is that by making MAID legal and accessible, more people will be pressured into feeling like they are a burden by family, friends, and society at large and will decide to proceed with MAID even when they really don't want to.

I won't deny that this is possible. And what reprehensible human beings those people are, the ones that would make a patient feel like they are a burden and pressure them into electing death.

However, here are some additional perspectives to consider:

Many people who are chronically or terminally ill already feel like a burden, without any external pressure /input from people in their network. This is reality; it does us no good to be in denial about the harsher realities of life. And in some cases, without access to MAID, people end their own lives by suicide because they feel like they are such a burden and that their loved ones would be better off without them. Now in this regard, if I had to choose between a person having to die by medically assisted death versus face the terrifying and isolating option of killing themselves in secret, I would 100% prefer them to have access to MAID.

There are safeguards for a reason and this is where the public can use their voice to ensure that there are many safeguards in place to protect people from this situation, including multiple, one-on-one, private interviews with just the patient that are in-depth enough that in most cases, it would be possible to discern whether MAID is the person's true wish or not.

Some final thoughts

This discussion can go on forever but this blog post needs to come to an end at some point. I want to leave you with two final thoughts.

The first, we cannot deny that suicide happens. So many people are driven to ending their own lives by suicide because they are suffering and do not have access to the help that they need.

The harsh reality is that our society is a broken one in many ways. We do not have enough systems in place to provide the true support that is needed to alleviate suffering. There are not enough people who care to help. Even people who are in the profession of helping are not providing proper help. And that's not always because it's their fault. We have systems that are overwhelmed, overtaxed, but also lack funding and resources.

The ever-frustrating red tape of bureaucracy gets in the way of helping too. This one person articulated it well: "...my greater wish is that our society and our government took far more seriously our right to a life in which individuals' basic needs for food, shelter, healthcare, and education were reliably met wihtout forcing people to bend and twist through bureaucratic mazes and beg for compassion from often ill-informed strangers at the end of a telephone line or paper trail". I couldn't agree more, especially given that what she has described is what I have personally experienced.

Thus, people die gruesome deaths when they feel forced into taking matters into their own hands, in acts of desperation, in acts of hopelessness, and we need to face that reality. Compared to suicide, which is extremely traumatic for the suicide victim AND for all the people in their network that are left behind, medical assistance in dying is unquestionably, to me, the far more compassionate option.

The second thought has to do with a comment that one woman made directly to me in her vehement opposition to MAID (based on her religious beliefs) after telling me to go give my head a very hard shake. She said, "It is not the right of mankind to end life, but to save it in all circumstances. Illnesses (of all magnitudes) are part of life and where and how mankind learns about empathy, sympathy and most of all GRACE. It is immoral to kill, PERIOD. End of discussion." (You've got to love people who are so closed-minded that it's their way or the highway, they leave no room for constructive dialogue. How progressive and helpful).

I don't disagree that meaning and purpose can be found in pain and suffering. I don't disagree that the existence of darkness is what allows us to experience light. I don't disagree that suffering can provide the opportunity (don't forget, opportunities are not always taken) for us to learn empathy, sympathy, and compassion. But I do not believe that this is enough to deny showing compassion when it is within our power to do so, especially in this situation that we've been discussing.

If I knew someone who was suffering in excruciating pain every second of every day, for years on end, with no end in sight because there were no available treatments that worked, and every day they were robbed of any enjoyment, any quality of life, any function, any companionship (this is a whole other topic – the sad truth behind healthy people being unable to handle a severely, chronically ill friend), any hope of a better future, and they begged for escape from their suffering through death, I think it would be cruel and evil of me to deny them the one thing they can control to alleviate suffering by fighting against access to a legal, safeguarded option.

I also want you to understand that I am just talking about their physical suffering. Volumes could be written on the widespread impact that this physical suffering from chronic or terminal illness has on EVERY aspect of that person's life. To elaborate on that would paint an even more overwhelmingly depressing picture.

As for this woman who expressed that opinion, I would also like to say that no reasonable, rational human being would choose that kind of life of suffering. If she had to switch places with someone who wanted access to MAID because of how dire their life situation had become, and she were being completely honest and could put her religion and ego aside, I think she'd sing a different tune. Of course, that's purely my opinion and conjecture.

If you know nothing of true suffering, then perhaps it would be more wise, compassionate, and kind to spend a lot more time listening to those who do know true suffering before you cast judgement.

Thank you for hearing me out, friends.

With love & light,

Christina

PS. Please feel free to share this if you think it could be helpful to someone you know who is contemplating their own stance on MAID.