Today, the Supreme Court of Canada ruled that “People with grievous and irremediable medical conditions should have the right to ask a doctor to help them die” (See the CBC news report here).

Previously, the law said that “Everyone who (a) counsels a person to commit suicide, or (b) aids or abets a person to commit suicide, whether suicide ensues or not, is guilty of an indictable offence and liable to imprisonment for a term not exceeding fourteen years.” In 1993, this law was upheld in a similar challenge because the federal Attorney-General argued: “An absolute prohibition sends the message that all lives are valued, and worthy of protection from those who may subtly encourage vulnerable people to terminate their lives.”

In this post, I do not wish to address the intricacies of legal proceedings or the specific arguments being made. Rather I want to take a step back and ask “Whose right to die are we talking about?”

The “whose” in this phrase points to questions of identity, of autonomy and of community. The modern Western world has been built on the conception of the “self-made man” (and I use “man” deliberately because the idea of a “self-made woman” didn’t come about until later). That one could “pull themselves up by their bootstraps” and that “God helps those who help themselves” was a driver for Protestant work ethic. It could be argued that it was a helpful fabrication, since the American dream inspired so many people to work hard to make the United States the world’s foremost superpower.

Let’s not deceive ourselves into thinking this is the reality, however. Each one of us was born in a certain time and place, to certain parents in a culture with a pre-ordained identity that was not of our choosing. Statistics show the impact of parental race, poverty, education long before we ever had a single choice to make.

We could argue that from there we ‘take the reigns’ and drive our own fortunes, but while this may happen in exceptional cases, there is a reason that they are exceptional and movies like The Pursuit of Happyness are made.

When it comes to death, the effects of grief rippling through our family, friendships and community connections are merely a confirmation that our lives are not the autonomous, self-directed endeavor that we sometimes would like to believe.

An important question is why we like to believe this in the first place? 

Ethics of Autonomy

American cultural anthropologist Richard Shweder’s research on morality reveals that societal ethics are dominated by three fundamental veins of moral development. He has categorized these veins as the ethics of autonomy, community, and divinity (Haidt, 2006). The ethics of autonomy is based on moral concepts such as harm, rights and justice. These moral concepts are intended to protect individuals in pursuit of the gratification of their wants. The ethics of community is based on moral concepts such as duty, hierarchy and interdependency. Through these, individuals achieve dignity by virtue of their role and position in a society. The ethics of divinity, meanwhile, is based on moral concepts such as natural order, sacred order, sanctity, sin and pollution, which are designed to maintain the integrity of the spiritual side of human nature (Shweder et al., 1997). Shweder writes that presupposed by the ethics of autonomy is a “conceptualization of the self as an individual preference structure” while the ethics of community views the self as an “office holder” as part of a larger collective. He goes on to observe that the ethics of divinity conceptualizes the self as a spiritual entity, “connected to some sacred or natural order of things.” Even within the definitions provided, it can be observed that, while overlap may occur, these ethics are driven by different primary moral concepts and values along with differing conceptions of the “self” or the person.

Shweder’s findings revealed that “Americans of high social class relied overwhelmingly on the ethic of autonomy in their moral discourse” (Haidt, 2006, 188). This contrasts strikingly with the other two veins, where “The ethic of community, which stresses the importance of the group over that of the individual, tends to be allied with the ethic of divinity” (Haidt, 2006, 209).

In other words, our obsession with autonomy is not an autonomous decision but an inherited cultural norm, dictated in part by our own class and geographical location.

Opponents of the assisted-suicide ban have argued that “the government is trying to justify an absolute prohibition that has a serious impact on personal autonomy and causes enormous individual suffering” (Carissima Mathen, University of Ottawa law professor). The whole linguistic framework of this sentence is driven by the ethic of autonomy.

There is certainly some truth to the ethic of autonomy. The question is whether we should uncritically accept the language of autonomy when it comes to determining medical responses and legal precedents. Is this truly what we believe about our society and our lives? That individual rights and freedom are the be-all and end-all of ethical decision-making?

I am reminded of the story of Cain and Abel, the first recorded ‘assisted’ death:

Cain spoke to Abel his brother. And when they were in the field, Cain rose up against his brother Abel and killed him. Then the LORD said to Cain, “Where is Abel your brother?” He said, “I do not know; am I my brother’s keeper?” And the LORD said, “What have you done? The voice of your brother’s blood is crying to me from the ground. (Gen. 4:8-10, ESV)

The whole account is permeated with inter-connectivity and relationship. Abel is never described apart from the relationship of being Cain’s brother. “Am I my brother’s?” is the question being asked but even within the language lies the verdict. We belong to one another: we are our brother’s, sister’s, mother’s, father’s, friend’s, neighbour’s. To escape this reality is to abdicate an important aspect of ethical responsibility.

Corporate decision-making

The ruling back in 1993 upholding the ban on assisted suicide identified that there is a need for protection from those who may subtly encourage vulnerable people to terminate their lives. This is a reminder that we do not all hold rational decision-making power to the same capacity, and often not even to the capacity that we may believe that we do. While today’s ruling is defined as applying only to “competent adults with enduring, intolerable suffering who clearly consent to ending their lives,” we need to ask the question of what is being consented to? Whose competency are we talking about?

We have already referenced the complex interplay of relationships within our understanding of “self.” Let’s take a specific example of this: Our relationship with medicine, and more specifically our own doctor. For Foucault, in The Birth of the Clinic, the history of medicine is a complex one that results in the perception of a “medical gaze,” where the doctor at the patient’s bedside essentially replaces the priest as the seer of the body. In an age of biological reductionism, the doctor’s perceived medical prowess becomes almost super-natural, where their suggestions, speculations and observations carry weight about matters that we don’t feel we understand, a way of looking that sees more than we will see about our own condition.

Contributing to this is the story that medicine tells itself about itself. The current iteration of medical knowledge is always understood to be the best, while medicine itself is the religion of the body, a discipline which always has its patient’s best interests at heart. Foucalt writes,

“Medicine had tended, since the eighteenth century, to recount its own history as if the patient’s bedside had always been a place of constant, stable experience, in contrast to theories and systems, which had been in perpetual change and masked beneath their speculation the purity of clinical evidence” (Foucalt 1975, Birth of the Clinic)

Thanks to the Internet and to stories of friends and family, and perhaps our own encounters, we and physicians themselves recognize that they are not infallible. However, in the same way that religious abuses by clergy at times stem from an unquestioning reliance on their access to a ‘higher truth’, so many decisions can be made on the advice of others because we fail to recognize the limits of their knowledge.

This simply serves to highlight the forces that can make any one of us ‘vulnerable’, even if we would see ourselves as “competent adults” who “clearly consent.” We are still influenced by many opinions, forces, and factors outside of our control. This says nothing about pressures from family and friends or the “subtle encouragement” we can receive from those who feel they know best how we live.

Beyond the slippery slope argument…

The “slippery slope” argument that even the ‘best laid plans’ can result in extreme results down the road is one that is often referred to, in large part due to statistics from other countries that have previously gone down this path. In the Netherlands, for instance, deaths from assisted suicide have risen 13% since they first became legal in 2002  and have expanded to include people with chronic depression and dementia. What I am arguing in this post is not the slippery slope argument that has been addressed in so many places. It may be possible to avoid, in part, the ‘slide’ with the implementation of very specific guidelines.

What I am arguing is that in Western society even those of us who see ourselves as competent, mentally healthy adults who are fully in control of our rational capacities are influenced and inter-connected in many more ways that we would sometimes like to admit. Foucault, not only in the Birth of the Clinic but in his other observations on the way that power impacts our lives reminds us of this.

Where this collides with disability issues is in the acknowledgement that there is still stigma around disability. There are attitudes that disability must make life unbearable, or that one’s ‘quality of life’ is so low with certain types of disability that it is not worth living. These undercurrents of thought impact our society, the perceptions of family and friends, and even the medical profession.

In our work with people with developmental disabilities this has been borne out even with respect to the removal of life support – people who arguably could have recovered to health have been removed from life support by decision-makers in part due to the perception of what life with a disability is like.

It’s time we stopped perpetuating an over-emphasis on individual autonomy so that we can have honest conversations about the way relationships and power impact our decision-making. It’s time to face up to the devaluation of life that is implicit in society’s perception of people with disabilities. It’s time we stopped having conversations around “laws” and “rights” in silos without first addressing the complex interplay of forces that will determine the far-reaching impact these decisions will have into the future.

References:

Foucault, M. (1975). Birth of the Clinic, The : An Archaeology of Medical Perception (Vintage). (A. M. Sheridan Smith, trans.) New York: Vintage Books.

Haidt, J. (2006). The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom. New York: Basic Books.

Shweder, R. A., Much, N. C., Mahapatra, M., & Park, L. (1997). The “big three” of morality (autonomy, community, and divinity), and the “big three” explanations of suffering. In A. Brandt & P. Rozin (Eds.), Morality and health (pp. 119-169). New York: Routledge.