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Preserving life through death

  • August 01, 2016
  • Emma Carver

Fifteen years ago, my grandfather, who required dialysis three times a week to stay alive due to his malfunctioning kidney, made the courageous decision to stop treatment. He knew that this would mean his certain and imminent death. While his mind was perfectly intact, and he may have lived for many more years, he was suffering from intolerable amounts of pain. He no longer wanted to spend three days a week hooked up to a dialysis machine (as he had been doing for six years), increasingly unable to enjoy any quality of life. My grandfather chose death over an extended life of pain and suffering. 

I remember our last conversation, the weekend before he stopped treatment. He was unwavering in his choice, and despite the emotional occasion, he seemed at peace. He knew he would die within 5 to 10 days, but beyond that he had no control over the timing or manner of death. His medical team kept his death as comfortable as possible through the use of morphine and painkillers. At that time, it would have been illegal for his physician to assist with the death. 

This was my first experience with voluntary death. It instilled within me a deep appreciation for the right of individuals who are suffering intolerably to choose when to end their lives. For me, this was always a straightforward question of compassion. 

Six months into practicing law, Andrew Faith, a partner at our firm, asked me to help him bring the first physician-assisted death (PAD) application in Ontario. Since then, we have argued eight of the twelve applications for PAD brought in the Toronto region. In addition to these eight clients, I have spoken with dozens of other potential applicants, some of whom passed away painfully before their applications made it to court.

My extensive involvement with these applications has, in my opinion, put me in a unique position to comment on the debate over PAD (or, as it is now referred to, medical aid in dying (MAID)). Over the past few months, I have come to know many of the individuals who have benefitted from the availability of MAID. I have heard their life stories, reviewed hundreds of pages of their medical records, come to understand the nature of their conditions and prognoses, spoken with their loved ones, and listened to their clear, well thought out desires for MAID. On each occasion, I have had to communicate to the court, on their behalf, the nature and degree of their intolerable suffering and the reasoning behind their request for MAID. I have been in touch with many of their families both leading up to and in the aftermath of their applications. I feel both humbled and privileged to have been a small part of this new chapter in Canadian history, and the experience has turned me from a passive supporter to a staunch advocate for legalized MAID. 

As I watch the public debate over this issue, one of my greatest frustrations is that the public will never be introduced to these courageous individuals in any great detail, due to their understandable desire to maintain privacy. In my conversations over the past few months, I have come to realize that much opposition to PAD comes from a place of fear or misunderstanding. I firmly believe that anyone who knows the dire circumstances of our clients would understand how cruel it would be to deny their request to end their intolerable suffering. For this reason, I feel compelled to speak about MAID. I want to shed light on the unique perspective of individuals who seek MAID, so that the public can understand why the constitutional right granted in Carter v Canada (Attorney General), 2015 SCC 5, is so important to those who are looking to end their suffering. Drawing from my experiences with the individuals who are actually seeking assisted death, I hope to provide insight into the MAID process, clarify some of the misunderstandings that exist, and show why fears about the process are misplaced.

It is important to first clarify what the Supreme Court actually decided in Carter. For better or worse, the Supreme Court did not grant a positive entitlement to MAID, even for individuals who meet the Carter criteria. Rather, the Court found that the government could not prohibit MAID for those individuals who meet these criteria, which require that an individual (i) is a competent adult, (ii) has a grievous and irremediable medical condition, (iii) is experiencing intolerable suffering that cannot be alleviated by any treatment acceptable to them, and (iv) clearly consents to PAD. “Clear consent” requires a person to be fully informed of their medical condition, prognosis and treatment options, and be free from any undue influence or coercion.

In reality, many people who meet these criteria will still be unable to avail themselves of a PAD, even where their suffering is extraordinary and their wishes are clear.

Accessing MAID can be difficult, even for the most deserving and qualified patients. The assessment process requires the involvement of at least two independent physicians or nurse practitioners, and in many cases a third physician will be required due to internal hospital policies mandating psychiatric consultations. The health care system can be difficult to navigate at the best of times. For those individuals who lack social and economic resources, and who find themselves in the deepest depths of suffering, the work involved in marshalling assessments and timely referrals can be insurmountable. Finding a physician willing to carry out the procedure is even more challenging, and is already creating barriers in many parts of the country. I applaud those provincial governments and organizations that have commenced efforts to assist with the referral process, but I remain somewhat skeptical. Even in Toronto, finding physicians has, in several cases, been challenging.

Obtaining the required drugs for the procedure also creates an access problem. Currently, these drugs can only be dispensed through hospitals. In Toronto, I am only aware of a few hospitals willing to dispense them. This has led to enormous barriers for individuals who have never been patients at these hospitals, or who do not have someone (whether it be a family member, lawyer or attending physician) willing to advocate for them. The disparity between rural areas and urban areas, and between those of higher and lower socioeconomic status, is not likely to disappear any time soon.

A fear that commonly surfaces during discussions about MAID is that the vulnerable will be induced to access PAD in a time of weakness. In my experience, regardless of how one defines “vulnerability”, this concern is misguided. In actuality, the vulnerable face the biggest barriers in accessing MAID, even when they are the most deserving and clearly meet the Carter criteria. Adding to the systemic barriers noted above – which will undoubtedly be more pronounced for the vulnerable – is the fact that physicians will (appropriately) approach anyone who appears to be vulnerable with great caution. Assisted death is a very time-consuming, personal experience between a physician and a patient, and many physicians may simply not have the energy to expend on harder-to-serve individuals. They may also be reluctant to take the risk of assisting such patients given the complexities involved. I have seen this play out first hand in my efforts to connect a patient who was extremely vulnerable, both from a physical and socioeconomic perspective, to physicians willing to make the appropriate referrals for assessment. Some physicians who are strained under their current workload may subconsciously gravitate towards patients who will require less of their time – namely, those with social resources, a strong support network, good communication skills and higher intellect.

Further, basing opposition to MAID on a concern for the vulnerable is inconsistent with the amount of confidence and trust we place in our physicians and nurse practitioners in every single aspect of our health care system. We are fortunate in Canada to have a health system filled with compassionate and highly skilled medical practitioners who are tasked with protecting the vulnerable in a variety of contexts. Physicians and nurse practitioners belong to regulated professions that have released comprehensive guidelines and safeguards regarding MAID. If we start to doubt the ability of these medical professionals to determine capacity, consent, undue influence and other medical questions, and if we question the ability of our physicians to protect vulnerable patients, we risk threatening the core foundations upon which our healthcare system is built. 

Another common objection to MAID derives from the notion that the healthcare system is designed to help, not harm. In addressing this concern, it is important to mindfully reflect on what “harm” truly is. One lesson my clients have taught me is that death does not need to be seen as some unequivocally harmful outcome to be avoided at all costs. Rather, death can be incredibly peaceful and meaningful – something to embrace, not something to fear. This proposition feels intuitively wrong for many of us, and I think our discomfort with this concept stems from the way our culture tends to hide death away. We avoid talking about death, even with those who are terminally ill. In a uniquely modern way, MAID has caused us to reflect on and discuss our own inevitable mortality, and has reconnected us to a time when death was simply seen as a natural part of life.

Over the last few months, not a day has gone by where I have not spoken about death in some way or another. Usually, these conversations take place with someone who is staring death in the face. Discussing with a client their prognosis, arranging the timing and logistics of a death, explaining to a patient’s family how the assisted death will occur, and hearing from a client why they feel death would be the ultimate release from their suffering, has enabled me to slowly chip away at the socially constructed taboo that surrounded the notion of death in my own mind. I have found this experience to be enriching and enlightening. 

In many ways, the MAID process has been a transformative one for those involved. I have witnessed the fear of speaking about death evaporate among family members and our clients. For the first time in Canadian history, patients who are suffering can openly express to their family members and their doctors a desire to die without feeling ashamed or being labelled suicidal. Patients can expect to be listened to and validated. The pain and suffering that many would have chosen to bear in silence can now be expressed and addressed. Families are able to start the grieving process together, with the person who they are mourning. Children can fly in from across the country to say goodbye to a parent; families can be together and provide comfort to each other as the death occurs. Patients who would otherwise die in hospital can be discharged so that the death can occur at home. While our clients’ deaths were “medical” in the truest sense of the word, they were also deeply personal and intimate. They were free from the beeps of heart monitors, intrusive and uncomfortable medical equipment, the chaos of shift changes, and the cramped quarters of sterile hospital rooms. In one case, I was told by the client’s son that his father was beaming, joyful, and making jokes up until the end – one of the only good days he had had in years. Most people are not so fortunate to die surrounded by all their loved ones, having said their goodbyes. In short, death no longer has to be a lonely experience. 

It was plainly apparent to me that all of our clients clearly wanted to die, had made up their minds completely of their own volition, and were suffering unbearably. They varied in age, and their life experiences, education levels and past careers differed greatly. Most had children and grandchildren, many had spouses, and some were widowed. Our clients were both men and women; their genders were roughly evenly split. Some were religious, others were not, and they had different perspectives on spirituality and the afterlife. I had no concerns that these individuals may have been motivated by negative experiences with the healthcare system. In fact, the one thing they all had in common was a deep appreciation and respect for their physicians and health care teams. Most were extremely grateful and effusive about the treatment that they had received, and those who were terminal had uniformly positive experiences with palliative care. The reality was simply that the medical treatment offered could not sufficiently alleviate their intolerable suffering, and they were ready to die at a time of their choosing. 

Almost all of our clients used their authorizations within a few days, which spoke to the unbearable nature of their suffering. Some, however, waited longer. For these clients, the knowledge that they would be able to access PAD when they were ready was enough to provide comfort and restore a sense of control.

After our first case, I was asked whether the “victory” was “bittersweet”. My first instinct was to cautiously agree, feeling odd and somewhat guilty about celebrating a death. But I have come to feel only gratitude from knowing that these individuals have found peace in death, knowing that death was exactly what they wanted. Witnessing the overwhelming sense of relief that my clients expressed the moment their court applications were granted were some of the most rewarding moments of my legal career to date, and I have no doubt that they will remain so. The emotional aspect of these cases was not the death itself, but rather the knowledge that every delay in the application process might prolong their suffering, which was extremely difficult to watch.

I often think back to the first time I read Rodriguez v British Columbia (Attorney General), [1993] 3 SCR 519 in first year constitutional law, where the Supreme Court denied a woman suffering from ALS the ability to end her life with the assistance of a physician. It was the first time I felt real anger in response to a judicial decision. I was angered by the arrogance of detached individuals at the other end of the country telling a woman who was facing unfathomable suffering that she could not die in peace. I was angered by the fact that the amorphous objective of “preserving life” – a cruel concept when daily living is excruciating – was used to justify condemning someone to suffer.

I am thankful that judges and legislators have since implicitly acknowledged that respect for life – and for those who are living it – does not mean preventing death at all costs. PAD is not about life versus death, and it is not inherently incompatible with protecting the vulnerable. Instead, it is about compassion for those who are suffering and respect for their fundamental personal choices. Indeed, if we start distrusting the notion that individuals are able to accurately determine for themselves when their suffering is intolerable, we risk regressing back to a dangerous form of paternalism, where autonomy and dignity are compromised for the sake of antiquated concepts of morality.

Had Carter been decided differently, some of our clients who have had MAID would at this moment be suffering from excruciating pain, some without the benefit of family members nearby to care for them. Some may have died alone and suffering. Until we find ourselves in a body that has stopped working, until we experience intolerable and relentless suffering so horrific that we seek assistance in dying, I do not think any of us can truly understand the importance of having the freedom to choose how we end our lives. 

Much of my role in court applications for MAID has ended with the passing of Bill C-14, but I continue to be contacted by people who do not fit squarely within the corners of the new legislation. I have seen firsthand the cruelty that will result from excluding non-terminal individuals from the bill’s ambit, and I am deeply disappointed in the government for blatantly overriding the clear criteria established by the Supreme Court in Carter (as explicitly confirmed in at least two subsequent court decisions, Canada (Attorney General) v EF, 2016 ABCA 155, and IJ v Canada (Attorney General), 2016 ONSC 3380). As described in the opening words of Carter, the exclusion of non-terminal patients leaves these individuals with a cruel choice: to take their own lives prematurely, often by dangerous or violent means, or to suffer until they die from natural causes. I also foresee inevitable issues with access to MAID, as discussed above, including a troubling rural-urban and socioeconomic divide that may take decades to remedy. I look forward to remaining part of the conversation, and advocating for those who may face barriers in accessing MAID. We are at a pivotal point in Canadian history, and I urge all of those involved to approach this new legal landscape not from a place of fear, but from a perspective of compassion and respect for the autonomy of those who are suffering.

Emma Carver is a litigator in Toronto practicing at Polley Faith LLP. Emma was counsel to the first applicant in Ontario who sought judicial authorization for physician-assisted death, and has since brought seven applications. Emma graduated from the University of Toronto’s Faculty of Law in 2014. Prior to joining Polley Faith LLP, she clerked at the Court of Appeal for Ontario.