Untreatable. Degenerative. After days of diagnostic testing, that is what my neurologist told me. “Amyotrophic lateral sclerosis” he continued. “You probably know it from Stephen Hawking. ALS is a neurodegenerative disease, primarily affecting the motor neurons in the nervous system, as well as the muscles in your body. You will still have all your sensations, but won’t be able to react to them.”
As the doctor continued to explain, my mother sat next to me not realizing the impact this diagnosis would have on our family. I knew enough human physiology to know what ALS meant for my life moving forward. All I could think about in that moment was my father, who already worked 60 hours a week to support us, and my younger brother who was just starting his first year of university. I didn’t know how they would react when I got home. I debated telling them.
I became aware of the symptoms several weeks before the diagnosis. My handwriting began to get sloppy, I dropped things, and I stumbled while walking. These things happen to everyone, and being the clumsy person I am, I initially didn’t notice anything out of the ordinary. But these mishaps happened more frequently and with increased severity. Sometimes I would lose control in my legs. Sometimes my arms would become weak for long periods of time. Running around the River Valley, playing basketball, or even going to the gym were no longer possible. I was fearful of what would happen if I tripped down a flight of stairs, or fell while walking across a busy street.
Eventually, I consulted my family physician who referred me to the university hospital for further evaluation and diagnostic testing by a neurologist. Several anxiety-filled days later, the neurologist finally made the call. He said I needed to see him immediately and I vividly remember the tone of his voice. I knew at that moment that he had bad news.
Quietly, the doctor said, “Unfortunately, ALS is a genetic disease, and it is not curable. I am sorry to tell you, but the most optimistic prognosis I can give is that you have about five to eight years. I will give you two some time alone.”
In the last few years, with the help of media attention, physician-assisted death (PAD) has been thrust into the spotlight, particularly in Canada in recent years. Countries like Belgium and the Netherlands have used PAD as a medical procedure since 2002 while Switzerland’s legalization of PAD dates back all the way to 1940 (1). The most recent legalization of PAD was in California in October 2015, signaling the increased focus to legalize or implement PAD to keep up with the evolving nature of the medical system (1). Arguments surrounding PAD date back to the 1950s with the condemnation of euthanasia by the World Medical Association. Vehement opposition aside, why have opinions on euthanasia and physician-assisted death changed now, and why have Canada and other parts of the world followed suit in legalization?
PAD differs from euthanasia. With euthanasia, a physician is focused on involvement and intervention, while PAD is ultimately performed by the patient. The physician, after considering the patient’s capacity to provide informed consent, gives terminally ill patients the means (ie. lethal medications such as barbiturates) to die on their own terms. Whether or not PAD is acceptable in medicine depends on what people think a physician’s role should be in the context of end-of-life care (2).
One common argument against PAD deals with one of the cardinal rules in medicine, “do no harm.” Written back in the 4th century B.C., the Hippocratic Oath states, “I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan (3).” Ever since, physicians have become the symbol of healing and preservation of life in Western society. Many medical professionals see PAD as a direct violation of their medical code and completely contrary to their medical training. According to a recent poll by the Canadian Medical Association, out of 1407 responses, 63% would not provide PAD as a service, believing it to go directly against the core of medicine, or that it would label physicians as murderers (4). Furthermore, legalization of PAD could ultimately result in the breakdown of trust between physicians and patients, as well as degrade the public’s view of medicine in general. Once given the power to “kill,” the relationship between doctor and patient becomes ambiguous, as the responsibilities of a doctor – healer and killer – are no longer well-defined. Furthermore, critics point towards evidence that countries with PAD legalized (Netherlands, Belgium) have relatively poor quality in hospice-style palliative care, as caregivers have the option of assisted death instead.
In response, some physicians argue that it is critical for professionals to separate their personal beliefs from their professional duties. Even though doctors may have personal objections to certain issues like abortions or assisted dying, ultimately they act as public servants to provide legal medical services for patients. Denying patients valuable health care resources would not only be unfair, but also force patients to look for providers elsewhere, whether that would be in a different city or even a different country. Even rural communities in Canada may have lower access to PAD options; for example, if a rural physician objected to performing PAD, then rural patients would be forced to go elsewhere. This brings up an accessibility issue for Canadians. Additionally, assisted dying is ideally a choice the patient freely makes; the physician’s role, like in any kind of medical care, is to ultimately respect a patient’s autonomy and choice. Some might also argue that assisted death would lead to a decline in advancements in palliative care. However, there is no real evidence to suggest that physicians use euthanasia or assisted death as an easier option compared to palliative care. In fact, the emotional impact on the physician implies that assisted death is always the last option considered and that they focus intensively on providing medical support and healing first.
Today is my birthday, but there is nothing to celebrate.
My life has been a whirlwind since the time of my diagnosis. I still go to school and hang out with friends, but being in a wheelchair prevents me from playing basketball with them. I see my rehabilitation therapist three times a week, but the therapy never seems to work. My parents take care of me on a constant basis, but I can see their spirits and hope waiver each day. My identity as a student, as a friend, and as a daughter has slowly been replaced by my disease. I no longer feel like a functional person. My autonomy is gone, and the decisions I used to make are now made for me.
I slowly wheel myself through my bedroom doorway and eventually into the kitchen; because of my disease, my father was forced to turn his office into my bedroom on the first floor. My parents and my brother are all around the kitchen table, preparing breakfast.
What is my condition like now? Not very pleasant. Physiologically, the control of my muscles progressively decline. It has been much harder to stomach food, and my speech is more disjointed and slurred. My body takes a few moments longer to respond as compared to before, and this becomes more and more debilitating. With progressive muscle atrophy, I felt weaker and weaker every day. Psychologically, the problem is that I still have my senses to work with. If I see a child fall down in the park, I can’t do anything to help. If a dog runs and comes to me, I cannot pet it. Every time I try to interact with my environment, I can’t.
On the TV earlier, CBC reported about a case involving a terminally ill young woman looking to use physician-assisted death as means to end her life. Her name was Brittany Maynard. At the age of 29, she was given six months to live after discovering she had stage IV glioblastoma, the most deadly of brain cancers (5).
I immediately identified with her — she too had been given a limited time to live and had her life broken apart. All these feelings came back to haunt me as my eyes were transfixed to the TV. PAD became increasingly prevalent in the news, but it was something I never thought about as a patient. But here and now I thought about it differently – don’t I have the choice to do whatever I want regarding my medical condition? Do I have a choice between intolerable suffering and a quick and painless death?
My mother quickly changed the channel. It was obvious why. I washed my breakfast down with some orange juice.
Brittany Maynard’s case received national attention for bringing the issue of physician-assisted death to the forefront. Being diagnosed with glioblastoma, an aggressive malignant brain tumor, she was given only months to live; in that time, she became an activist for death with dignity laws in the United States. Given her young age and the impact social media had in spreading her story, her case sparked a global debate about PAD and its use in end-of-life care (5).
Because only three states in the United States had death with dignity laws in place at the time (Oregon, Vermont, and Washington), Brittany had to uproot her life to move from California to Oregon (California legalized PAD in October 2015) (5). Oregon’s Death With Dignity Act, from 1994, set clear guidelines and regulations on who could use PAD (6):
- Patient must be at the age of 18 or above, and suffer from an incurable disease with life expectancy less than 6 months
- Diagnosis confirmed by two physicians
- Verbal request and written request signed in the presence of two witnesses to attest that patient was competent and voluntary
- Patient must be able to make and communicate health care decisions for himself/herself (6)
In a case closer to home, a major advocate for PAD recently ended her life in September 2015. In an online blog, Albertan Donna DeLorme chronicled her daily struggles with progressive multiple sclerosis, and later on, her decision to end her life (7). Through her regular posts, she highlighted how she was unable to do anything a healthy person could do. When she finally set out her plan to commit death in secrecy (since PAD was not legalized in September 2015), she commented mostly about the relief she felt after making her decision.
In both cases, the individuals spoke about how they did not want to die, but that they were dying, and the reasons for choosing death was to die on their own terms. Now it is up to the government and the policy makers to respond and address these patients.
It was early morning, late February. Every day was a blur, a mix of therapy, doctor and family visits, movies, being fed hospital food, and sleep.
Last month, my doctors recommended I move to a palliative care center, as it was no longer safe for me to stay at home. With attending nurses and health care aides, I would be monitored constantly to ensure I was doing okay and that my needs were met. I reluctantly moved, partly for my own safety, partly because I didn’t want to worry my parents any longer. One month in, and it was the same schedule every day.
Morning: nurses move my legs and arms to prevent clots and stimulate my muscles.
Afternoon: nurses come and wheel me around the hospital courtyard, saying it is “therapeutic” for me to visit nature on a daily basis.
Evening: My family comes to visit after work. “How are you feeling, honey? You’re looking better today.”
But today was a monumental day for Canada. The date was February 6, 2015. The nurses left the TV on for me in my room. CBC News was broadcasting the news about the Supreme Court’s decision to rule in favor for the right to die by physician-assisted death. It was important to me because I always had the concept of PAD in the back of my mind all these years. Why? I was never going to heal, never going to be back to who I was before. I was entirely dependent on other people to function. The progression of the disease resulted in persistently excruciating pain. My quality of life and ability to function had deteriorated rapidly. My disease was intolerable, incurable, and I was suffering. My brain was degenerating, and so was I. Was I selfish? Maybe. My parents probably would not want to hear of it, and the last thing my physicians would want to do is help me die. But for once, this would give me control of my life.
The politics behind PAD has an extended history in Canada. Gloria Taylor, a patient with ALS, argued against the prohibition of PAD because it violated the rights presented in the Charter of Rights and Freedoms. Following their victory in the Supreme Court of British Columbia, the federal government filed an appeal. The Carter v. Canada case then moved up to the Supreme Court of Canada, where in February 2015, the Supreme Court unanimously ruled that the Criminal Code provision regarding death directly deprived medically ill patients their right to life, liberty, and security. Specifically, the Supreme Court is quoted as saying:
It is a crime in Canada to assist another person in ending her own life. As a result, people who are grievously and irremediably ill cannot seek a physician’s assistance in dying and may be condemned to a life of severe and intolerable suffering. A person facing this prospect has two options: she can take her own life prematurely, often by violent or dangerous means, or she can suffer until she dies from natural causes. The choice is cruel (8).
In addition, the Supreme Court also set stringent criteria to determine who could use PAD as a medical service. Typically the patient must be a “competent adult” who understands and consents to the termination of life. This patient must also have a “grievous and irremediable medical condition” that “causes enduring suffering intolerable to the individual.” Following the ruling, the Supreme Court suspended their decision for 12 months to allow the federal and provincial governments to update their regulatory policies to include PAD as a medical service for patients who need it. Since then, the Supreme Court granted the federal government a four-month extension to implement policies regarding the practice of PAD in Canada. Between the Court’s decision in February 2015 to the legalization date in 2016, any patient who wished to use PAD would have to apply for an exemption by the provincial court (9).
In the past, the court ruling regarding PAD was not so decisive. For example, in the Rodriguez v. British Columbia case of 1993, Sue Rodriguez, diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s Disease), filed a lawsuit challenging that the prohibition of assisted death directly violated Sections 7, 12, and 15 of the Charter of the Rights and Freedoms (10). However, she was largely unsuccessful and assisted death remained part of the Criminal Code.
So why was the latest ruling by the Supreme Court in favor for PAD to be legalized in Canada? To understand why, it is important to consider Sections 7, 12, and 15 of the Charter, the three sections referred to specifically in the Carter v. Canada case. Section 7, known as the “life, liberty, and security” provision, is a legal right for all Canadians to autonomy, independence, and the right to make personal choices. In relation to PAD, the common denominator in many cases is giving terminally ill patients the liberty to make their own decisions regarding their health and life. Since patients are given the capacity to make decisions about their medical treatments, why not also provide them with the autonomy to make end-of-life decisions?
Section 12 of the Constitution protects an individual from punishment deemed unacceptable as a result of suffering, pain or humiliation. As stated in the quote above, the Court posited that removing the possibility of assisted death was unfair to patients, as they would have to endure years of suffering and pain without any chances of returning to their prior quality of life (9). Lastly, Section 15 is an equality right that guarantees every person under the law to be equal regardless of their sex, race, age, religion, colour, or mental or physical disability. Under this general provision, it is worth questioning if it is fair that people “able” to commit suicide are given the opportunity while those that are physically unable to do so continue to experience suffering and hardship (9).
As the medical practice has shifted more towards affirming patients’ autonomy and right to choose, it is understandable why the Supreme Court ruled unanimously for the decriminalization of PAD. Following suit with countries like Belgium and the Netherlands, and even several states in the USA, the adoption of this medical service is set to begin as of June 2016. In Alberta, the legalization date is June 6th, 2016. As of now, both the federal government and provincial governments are working on a medical framework and associated policies to serve the needs of patients who are terminally ill and suffering (9).
With my physician’s assistance, I took a lethal dose of phenobarbital, a depressant that causes respiratory failure.
Late last year, physician-assisted death was legalized in Canada following the Supreme Court’s ruling in 2015. The decision was met with controversy, but most of the public was in favor of legalizing assisted death for terminally ill patients to end their life.
After rigorous protocols a few months ago with the physicians, they ordered me the prescription. During that time, the physicians deemed me still capable of making such a decision, that my disease was incurable and insufferable, and that I had less than six months to live.
My family sat around, all shedding tears as they said goodbye. The physician also stayed in the room, present to record my time and manner of death. Everyone was at peace with my decision, understanding fully all the mental and physical battles I’ve been through for the past seven years. The confusion at the beginning, followed by anger and despair, and finally now to this moment. Some of them may have disagreed with my decision, but they definitely did a great job of hiding it.
I never wanted to die, but I was going to die soon anyway. Why not do it on my terms, in my home, laying in my bed, and surrounded by my family?
At first, I had hope in the back of my mind that I was going to wake up and this would all just be a nightmare. I never woke up. From a certain viewpoint, it was an easy decision for me to make. I read enough information and had enough doctor visits and consultations to realize I was never getting better.
PAD still remains controversial and even unacceptable by certain groups. Some critics believe that PAD will spell the end of competent patient-centred palliative care; instead of giving the best care possible, doctors may encourage PAD. However, from my point of view, it gives another option for patients. Not only do people have the right to live, but more importantly, people have the right to choose life — it is life, liberty, and freedom after all. In the end, I was given the opportunity to make a decision with regards to my health, and I chose to die with dignity.
As a patient with ALS for the past seven years, that is all I could ask for.
(1) Euthanasia Research Guidance Organization. (2015, October 15). Assisted Suicide Laws Around the World – Assisted Suicide. Retrieved from http://www.assistedsuicide.org/suicide_laws.html
(2) University of Dalhousie, Health Law Institute. (n.d.). Assisted Suicide – End-of-Life Law and Policy in Canada. Retrieved April 05, 2016, from http://eol.law.dal.ca/?page_id=236
(3) Ruggles, T. (2016, April 13). Bioethics – Hippocratic Oath. Retrieved April 14, 2016, from http://guides.library.jhu.edu/c.php?g=202502
(4) Kirkey, S. (2015, August 25). Majority of doctors opposed to participating in assisted death of patients: CMA survey. Retrieved April 14, 2016, from http://news.nationalpost.com/news/canada/0826-na-assisted-death
(5) Maynard, B. (2014, November 02). My right to death with dignity at 29. Retrieved April 14, 2016, from http://www.cnn.com/2014/10/07/opinion/maynard-assisted-suicide-cancer-dignity/
(6) Oregon Health Authority, Public Health Division. (n.d.). Frequently Asked Questions. Retrieved April 14, 2016, from https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/faqs.aspx#whatis
(7) CBC News. (2015, September 25). Assisted-suicide advocate Donna DeLorme takes her own life. Retrieved April 14, 2016, from http://www.cbc.ca/news/canada/calgary/assisted-suicide-advocate-donna-delorme-takes-her-own-life-1.3244299
(8) Payton, L. (2015, February 06). Supreme Court says yes to doctor-assisted suicide in specific cases. Retrieved April 14, 2016, from http://www.cbc.ca/news/politics/supreme-court-says-yes-to-doctor-assisted-suicide-in-specific-cases-1.2947487
(9) Alberta Health. (n.d.). Physician-assisted death. Retrieved April 14, 2016, from http://www.health.alberta.ca/initiatives/physician-assisted-death.html
(10) Supreme Court Judgements Canada, Rodriguez v. British Columbia (Attorney General). (n.d.). Retrieved April 14, 2016, from http://www.hrcr.org/safrica/freedom_security/rodriguez_bc.html
Banner illustration courtesy of Wanderer Online Visual Editor Fren Mah; photography courtesy of Wanderer Online Visual Editor Bryan Tran.