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Living Ethically in Face of Death: Probing Some Deeper Questions

Volume 31, Issue 4,5 & 6, May 30, 2017

Christine Jamieson, Montreal

‘I don’t want to suffer anymore.’ ‘.... what could be more meaningful than planning for the end of your life.”  – John Shields, with his dog Diego, New York Times, May 28, 2017

     On June 5, 2014, the National Assembly of Quebec passed Bill 52, also known as “An Act respecting end-of-life care”. The Act allows a doctor who has been given the consent of the patient to administer medication to cause death. It lays out the criteria that must be met for a person to obtain “medical aid in dying”. Key here is capacity to consent, the patient must be 18 years or older, suffer from an incurable serious illness, be in an advanced state of irreversible decline in capability, and suffer from constant and unbearable physical or psychological suffering. 
On April 14, 2016, the Government of Canada introduced legislation to make medical assistance in dying available. The legislation, Bill C-14, received assent on June 17, 2016. Similar, although not identical, criteria to the Quebec Bill 52 were laid out. 
     At a surface level, the ‘debate’ that continues around physician assisted death in Canada tends to be reduced to two foundational stances. On the one hand, there are those who promote human life as a gift and a responsibility. Therefore, life is not optional, it is not something one may choose. 
     Rather it is a basis upon which we make choices. The basis itself is not or should not be a choice. On the other hand, there are those who insist that each person has the right to decide when they have had enough of a terrible suffering due to terminal disease (or for other reasons). From this perspective, these people have a right to receive a physician’s assistance in ending their life. 
     Reflecting on physician assisted death raises questions that are not often broached from these two foundational stances. For example, how might one identify one’s values when thinking about the meaning of one’s life and death? What is the relationship between one’s autonomy to freely choose and the social structures that shape one’s freedom? It is possible to address questions and consider tools of analysis that help us to broaden the discussion beyond the somewhat simplistic dichotomy. In fact, it is ethically imperative that this happens. 
     “Ethics” is a matter of practical concern. It is the conversation we have with ourselves and others about the future, that is, about what it is “I” or “we” are going to do. It is about making decisions and acting on them. 
     The legalization of physician assisted death introduces a new dimension to our decisions. The goal of ethics is intricately related to promoting the good of the task we are doing. Yet, what is the “good” or how do we understand the “good” in relation to end of life care, a decision with which we are all faced? 
     The purpose of Quebec Bill 52 is to ensure that end-of-life patients “are provided care that is respectful of their dignity and their autonomy and to recognize the primacy of wishes expressed freely and clearly with respect to end-of-life care.” Because the Bill and medical aid in dying were considered part of healthcare, which is a provincial jurisdiction (unlike the Criminal Code which is under the Federal government) Quebec passed Bill 52. The Government of Canada sanctioned physician assisted death by amending the Criminal Code and decriminalizing physician assisted death in Bill C-14. 
     The Bill emphasizes the importance of the “autonomy of persons who have a grievous and irremediable medical condition that causes them enduring and intolerable suffering and who wish to seek medical assistance in dying”. 
     Both Bills establish the rights of such patients as well as the “organization of and a framework for end-of-life care so that everyone may have access, throughout the continuum of care, to quality care that is appropriate to their needs, including prevention and relief of suffering.” (Bill 52) The underlying values are human dignity, autonomy, rights of individuals (patients), and freedom. Yet, it seems to me there are values operative in these decisions that are not explicit in the Bills. How might we think about this?
     Canadian theologian and philosopher, Bernard Lonergan, identifies three levels of moral meaning. The levels are a tool of analysis that can help in ethical deliberations about end of life care. Lonergan explores the levels against the backdrop of social structures, that is, our traditions, institutions, societies, etc. that constitute our living together. 
     At the first level, what is ‘good’ is focussed on individual good. Here the good is what satisfies my needs, desires, and personal interests and social structures are means or instruments to achieving this. When a person is experiencing extreme pain, it is very hard to reason beyond the first level. 
     Hannah Arendt, in The Human Condition says: “Indeed, the most intense feeling we know of, intense to the point of blotting out all other experiences, namely, the experience of great bodily pain, is at the same time the most private and least communicable of all. 
     “Nothing . . . ejects one more radically from the world than exclusive concentration upon the body’s life, a concentration forced upon man in slavery or in the extremity of unbearable pain.”  
     The second level, Lonergan calls the “good of order” and it implies accountability to a wider social order that transcends personal desire. I may desire and need to ‘end my suffering’ and so ask a physician to end my life either by providing the necessary lethal drugs or by actually injecting me with lethal drugs. Yet what impact will this have on the social structures of healthcare teams, hospitals, palliative care units, or the Canadian medical system? 
     At this level, the good has to do with maintaining social structures. The focus is on the good of social structures themselves. In the April 18, 2017 Times Colonist article by Amy Smart (see page 7) titled “Expansion brings assisted dying issue to fore” the tension between the ‘good’ of a patient and the ‘good’ of an institution (Hospice at The Views which is co-owned and operated by St. Joseph’s General Hospital in Comox Valley) is being debated. 
     This is not a new debate as many palliative care institutes in Canada are struggling with juxtaposing palliative care with physician assisted death. Balfour Mount, considered the ‘father’ of palliative care in Canada, expressed distress in bringing together as a ‘continuum of care’ physician assisted death or medical aid in dying and palliative care. 
     He states: “The first thing I would say is that the very name of that intervention, ‘medical aid in dying’, is misleading rhetoric. Medical aid in dying is what I have been doing for 50 years. This bill is not talking about medical aid in dying really, it is not talking about ending the suffering, but instead, ending the sufferer. We are talking about legalizing killing people. We have to be clear what this is. I am totally in favour of medical aid in dying. I have spent my professional life working toward that end. But, I do not support euthanasia and assisted suicide.” (Interview located at )
     The focus at the third level of moral meaning is what can be described as a longer-range vision of what promotes historical progress or decline. Here, social structures themselves come under scrutiny and need to be critically evaluated in asking whether they themselves might be sources of decline rather than sources of human flourishing. One might ask questions about what constitutes a good healthcare team, a good hospital, a good healthcare policy, a good palliative care unit, or a good medical system. 
     At this level, questions must be asked not out of personal interest, nor out of promoting one’s agenda or one’s group, but rather asking what constitutes the truly valuable for human living with other people. At this level, a critical evaluation of the tension between the first and second levels is crucial. 
     For example, Catholic Healthcare in Canada is facing intense criticism as the media focus how Catholic hospitals are transferring patients requesting physician assisted death to healthcare facilities able to accommodate the patient’s request. What will the outcome of this debate be? 
     Catholic hospitals cannot participate in ending a person’s life through lethal injection. Does this mean the good of Catholic hospitals, which can be substantially demonstrated (second level good), will be eclipsed because of the first level good of a patient requesting physician assisted death? What of the ‘good’ of palliative care in Canada. Will this ‘good’ (first and second level good) be compromised with so much focus on physician assisted death? 
     Balfour Mount expresses this concern: “The suffering of people at the end of life has been enough to legalize euthanasia and physician-assisted suicide but interestingly, not enough to mandate excellence in palliative care for all Canadians. This is an ongoing need and in my view, a tragedy.”
     Another tool one can draw on in deliberating about physician assisted death comes from French philosopher, Paul Ricoeur. 
     In his book titled Oneself as an Another (University of Chicago Press, 1992) he makes a distinction between ‘ethics’ and ‘morality’. He speaks of morality as ‘precepts’, “which, in the form of advice, recommendation, and instruction teach how to succeed, hence, how to do well in what one has undertaken.” (169-170) 
     The distinction between morality and ethics sheds some light on our understanding of the ‘good’. There are two components that promote ‘doing well’ in what we undertake: having a clear understanding of the goal of our actions and knowing what rules to follow to attain that goal. 
     For Ricoeur, ethics has to do with the aim of our actions and morality with the norms inscribed in that aim. This distinction often serves as a source of tension in ethical deliberation – a tension between privileging ends or means. 
     Yet Ricoeur asserts that rather than an opposition between aim and norm, between ethics and morality (or between ends and means) moral norms evolve from within the ethical aim. This is important in thinking about physician assisted death. 
     As we saw in Bill 52 and Bill C-14, in Canada, what is considered good is based on the strongly held conviction that humans are autonomous beings and our dignity rests on our autonomy as well as on our rights and freedom. Yet, ethics always aims at what promotes human flourishing. 
     While ethical deliberation begins with the self and with what one judges as good, it can never be dissociated from others. Ricoeur is helpful in his definition of the “ethical intention as aiming at the ‘good life’ with and for others, in just institutions.” (p. 172) Is the other person merely a means to my realizing the good? Or, does the other call me to respect them and to enter dialogue with them? 
     As Ricoeur asserts, my ‘self-esteem’ depends on the other and on others. My autonomy, my uniqueness, and my freedom are only possible because I am in relation with others who acknowledge my autonomy, my uniqueness, and my freedom. Human beings are relational. 
     Our sense of identity is contingent on others; hence the notion of ethics is intrinsically connected to living with other people. From this, our responsibility toward the other emerges. We are summoned by the other to responsibility, we experience a sense of obligation toward the other. The role of institutions in ethical deliberation becomes clearer when we consider how responsibility and obligation extends beyond the face-to-face encounter and into communities. 
     When we think about pervasive inequalities that exist in all societies, it becomes clear that 'just institutions' are required to address these imbalances. One might think about an essential dissymmetry between a physician and a patient. Institutions protect patients from potential abuse that could result from this dissymmetry.
     One final point needs to be considered. It concerns the importance of ‘choice’. This is important in relation to medical aid in dying. Legalization of physician assisted death is the result of the foundational belief in the autonomy of patients and their right to choose. Yet, is it possible to step back to consider the meaning of this in relation to what constitutes us as persons? 
     Is a person merely one who can choose? And, what does it mean to choose? In exploring the various tools of analysis, the three levels of moral meaning and the “ethical intention as aiming at the ‘good life’ with and for others, in just institutions”, it seems that focusing on the act of choosing rather than the capacity to choose and the object of our choice is an impoverished view of human beings. What is lost? 
     Personal motivations are lost, as is a person’s story, and the complex journey that is a person's life. Individual responsibility is lost. As Ricoeur and Lonergan both demonstrate, humans are relational beings and ethics is about how we live with others and not only or merely about being creatures who can choose. 
     Finally, personal projects are lost, that is, the very stuff out of which we constitute the meaning of our lives. In a strange twist, personal autonomy becomes social determinism. We have been convinced that what gives us human dignity is autonomy and choice. Social determinism is ‘dressed up’ as personal agency. Pondering what it means to be human, one’s answer depends on what one is ‘allowed’ to consider. 
     Sociologist Christian Smith offers some insight here. He writes: “By ‘person’ I mean the particular kind of being that under proper conditions is capable of developing into (or has developed into) a conscious, reflexive, embodied, self-transcending center of subjective experience, durable identity, moral commitment and social communication . . . in order to develop and sustain his or her own incommunicable self in loving relationships.” (To Flourish and Destruct: A Personalist Theory of Human Goods, Motivations, Failure and Evil, University of Chicago Press, 2015, p. 35) 
     Smith’s definition opposes reductionism of the human person because it ‘allows’ for dimensions of a person that cannot be measured or circumscribed and are oriented toward more than merely autonomy and choice. For Smith, the human person is oriented toward goods such as “social belonging and love”.
     Rather than two foundational and opposing stances concerning physician assisted death, is it possible to shift the dialogue to a different level? Are there tools of analysis that invite reflection rather than suspicion? Is the very language we use already predetermining the direction toward which we are going as individuals, as communities and as a species? 
     In reflecting on the May 25, 2017 New York Times article on John Shields, “Celebrating Life and the Gift of Death,” it is not clear why Shields “believed that dying openly and without fear could be his most meaningful legacy . . .” Nor is it clear why, given our intrinsic relationality and responsibility to others, a “choreographed death” is a meaningful legacy. 
     Without wishing to be dismissive, it was startling to read that the day Shields picked to have 
Dr. Stephanie Green end his life was contingent on Dr. Green’s vacation schedule. But it seems the better question is to ask if it might be possible to stretch ourselves beyond our ‘foundational stances’ and enter into dialogue drawing on valuable tools of analysis for ethical deliberation and explore together what exactly we are doing to and with each other. 
     The very same quote Dr. Green uses to make meaningful her role in ending the lives of people with unbearable suffering (“You don’t judge a civilization by its riches, but by how it treats its vulnerable,”) is the exact same quote many use to express their horror that physicians kill patients. Is this how we treat our most vulnerable, they ask. 
     Yet, one final question and the most pressing one that we must continue to ask in a manner that pushes us beyond the first level of moral meaning to take on the critical evaluation required to promote human flourishing is this: what does it mean to ‘live ethically in the face of death’?
Christine Jamieson, PhD, Associate Professor, Department of Theological Studies, Concordia University, Montreal