Copyright holder: Tyndale University, 3377 Bayview Ave., Toronto, Ontario, Canada M2M 3S4 Att.: Library Director, J. William Horsey Library Copyright: This Work has been made available by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws of Canada without the written authority from the copyright owner. Copyright license: Attribution-NonCommercial-NoDerivatives 4.0 International License Citation: Patterson, Aimee. “A New Final Enemy: Reflections on Dying, Suffering and Autonomy.” Paper presented at the Wesley Ministry Conference and Symposium, Tyndale University College & Seminary, Toronto, Ontario, April 25, 2017. (MPEG-3, 24:10 min.) ***** Begin Content ****** The last enemy to be destroyed is death. We read this in one Corinthians 1526, and Christians have traditionally held to a theology that frames death as the last enemy. It can be taken as a personal statement, as a psalmist says, who can live and never see death. That statement, though, is also escatological. Jesus died eternal life to bring and lives that death may die. Now, we know this is not the dominant view in Western culture today. A significant shift in values is taking place in Canada and other Western nations, and it's a shift that is downgrading death from final enemy to enemy. More and more, it appears that people do not fear death as much as they fear dying and decline. And many people claim they would rather die than suffer a loss of autonomy. In my reflections, I'm going to illustrate this value shift by referring to the new federal legislation around medical assistance in dying, sometimes called made, which is just an awful acronym. This is Canada's version of Euthanasia and assisted suicide. I'll argue that requests form Made are grounded in what I perceive to be a growing attitude of fear, of losing autonomy. I will suggest finally what a Christian response to this culture shift looks like or might look like. Since June 2016, federal law in Canada has permitted eligible individuals to request and receive medical assistance in dying. That is, the provision or administration of medication that intentionally brings about a patient's death. So who is eligible to receive Made? The legislation frames it this way a person must be 18 years or older. They must be deemed mentally competent and capable of making decisions about their request. And they must be competent at the time that maid is offered to them. At the time of their death, they must have a grievous medical condition, which may include illness, disease or disability. And they must be in an advanced state of irreversible decline. They must also be at a point where natural death death apart from maid is, quote unquote, reasonably foreseeable, taking into account all of their medical circumstances. And finally, they must be suffering intolerably, whether from illness, disease, disability or from their state of decline. And while their medical condition must be physical, their suffering can be the result of a physical illness or a psychological condition. This requirement of intolerable suffering is fundamental to the legislation around Made. So what counts as intolerable suffering? Our minds might turn to the suffering caused by pain and discomfort. Now, the legislation in Canada doesn't define suffering for us, but the data coming out of places where hastening death has been practiced much longer than it has in Canada provide us with some insight into what people claim they are suffering from. Washington and Oregon are two states where physician assisted suicide is legal, and each of them issues annual reports based on physician documentation of patients whose requests for Pad or Pas are granted. The latest available reports they've issued identify the top concerns behind patient requests, and I suspect that these results are not far off from the concerns Canadians might have. So you see here, listed at the very top, loss of autonomy or the fear of losing autonomy. And very close in the figures reported, less able to engage in activities making life enjoyable. Following that quite a bit further down in terms of concern, is loss of dignity also burden on family, friends, and caregivers? Fear of losing control of bodily functions, inadequate pain control, or concern about inadequate pain control? And finally, way down the list, financial implications of treatment. And I also found it noteworthy, as I was looking through these reports, that in the case of Oregon, the concern about being a burden to one's family was statistically lower than the loss of control of bodily functions in reports prior to 2016. So that shift happened in 2016, where the loss of control of bodily functions took a lower place along the list of concerns. What strikes me is that concern about losing autonomy is listed in both reports, both reports issued from both states. At the top, it's numerically even with the second concern. Yet both states list at first, and the remaining concerns, in my mind at least, go hand in hand with this fear of losing autonomy. The attribute of autonomy or self determination is considered central, I think, in our culture to what it means to be human. And so the rights and choices of the individual are to be respected by others. We think it's important for everyone to have the freedom to shape their lives in a manner of their choosing. We're taught and encouraged to do things well, to do our best, to make a success of our lives. Now, I don't want to demonize autonomy because many of us would conclude that the good life looks like a life that is one that helps others, one that is not self centered. But we do, I think, still struggle against a tendency to pity those who are perhaps more compliant, more deferential, or those who appear to be failing at life. Autonomy doesn't prevent commitment and loyalty to people who are deemed pitiable, but it does seem to create a certain social distance between them and those among us who are more capable. With all that said, uncompromised autonomy is simply not a condition that is true to our nature. No one of us is capable of maintaining a state of permanent autonomy. Human beings are by nature vulnerable. When our bodies and minds are affected by illness, disease, disability, or a state of decline, we lose our ability to contribute to society in the way we are accustomed to or in the way we might have before. And it can be difficult at that juncture to be able to find meaning in life. And this, I believe, is in large part due to the way our culture interprets meaning in life. Our culture of autonomy. Consider the example of Kay Carter. Is anyone familiar with Kay Carter? One person? Okay, so Kay Carter was an elderly woman living in a care facility in Vancouver. She suffered from spinal stenosis, which is a terminal condition that involves the progressive deterioration of the nerves. It left her bedridden incontinent, unable to eat independently. One of her daughters is quoted as saying she didn't want to sit in the care home like many others around her with her tongue hanging out of her mouth. In 2010, Carter, who was 89 years old, traveled to Switzerland to receive assisted suicide through an organization called Dignitas. Carter's daughter and son in law were among the plaintiffs in the Supreme Court case that led to the new legislation that has made a legitimate medical act. The felt indignity in situations like Kay Carter's is compounded by our social infrastructure, which is not adequate to support people like Kay who are suffering. We don't operate out of a culture that presumes patients in decline will live with relatives or those closest to them. We're not set up for that anymore. And while work is being done to improve possibilities for good quality of life in long term care facilities and hospices, most of us would still prefer to spend our last days among those we love in our home in an environment familiar to us. And yet most of our loved ones are unable to offer frequent, lengthy visits, perhaps due to distance, perhaps due to the sheer busyness of work and family life. I feel deep compassion for people like Kay Carter, people who seek to avoid suffering a loss of autonomy by choosing to hasten their death. Nobody wants to be in the situation that Kay Carter was facing. Yet I come from a faith tradition that holds to the theological conviction that God has created each of us with a value that exists apart from any capacity. We have to be autonomous. Christians are called to be a witness to this truth, while never forsaking those who suffer intolerably so what does this witness look like in the midst of this cultural shift? What is it to be a witness of indelible human dignity in a culture that values autonomy in such an extreme way? I think there's something to be said for learning to suffer well. As how Ross has it, suffering is something that is unavoidable in human life, after all. So Christians are called to suffer with grace and patience. But I've never been in a class or Sunday school class or a Bible study where I've been taught how to suffer well. And I don't think many of us are taught how to decline. So I also think there's something to be said for learning to care well, learning to care well for those who are suffering a loss of autonomy. And I'd like to illustrate this by providing two examples, one from the past and one from the present. So I have a favorite example of Christian compassion, and it happened very early on in Christian history. Came to my attention while reading a book by Rodney Stark. He's a prolific sociologist of religion. He's got a dubious reputation, but Stark, I think, is a very entertaining read. He chronicles two epidemics that swept through the Roman Empire. First, the Antonine Plague in 165. Ce Or Ad. And the plague of Cyprian, which occurred nearly a century later. Both these plagues are thought to have wiped out about a third of the population. The best Greco Roman medical science of the day failed to provide a remedy or to prevent contagion. People stopped visiting one another. Family members who showed signs of illness were tossed out into the streets to suffer and die. Communities and cities collapsed, and survivors found that their society had been totally upended. But the Christian community on the margins of that society looked different. Christians were bound together by an ethic of compassion, and not the kind of compassion that's characterized by pity, but the kind of compassion that's expressed in its literal meaning to suffer with. Christians risked and often lost their lives caring for each other in very simple ways providing food, water, shelter, company, a safe place to sleep. And their shared suffering strengthened them in their belief that death would die and that soon there would be no more pain, no more suffering, no more tears, no more mourning. And this, they believed, was a truth worth suffering for. Stark goes on to speculate that this contributed to a higher rate of survival among the Christian population as compared to the pagan population. And he also notes that when Christians extended compassion to the pagans who had been just tossed out by their own families, the result was not only healing for them, but mass conversion to Christianity. Now to a more contemporary expression of compassionate care in the face of the loss of autonomy. And I hope you will be gracious in allowing me to share some of my own story. I speak as a person of faith who has long believed that human beings have been created in the image of God. I speak as a student of ethics whose doctoral dissertation addressed end of life care issues and was grounded in an assertion of inherent human dignity. I also speak as a person suffering a serious, incurable health condition. I was about three weeks into my job at the Salvation Army Ethics Center. I was still nursing my second child when I had what is explained as a focal seizure. Within weeks, I was diagnosed with brain cancer, and I began a 15 month course of very taxing treatment that included surgery, radiation therapy, and chemotherapy. Throughout this, I had a number of distressing experiences of pain and discomfort, and honestly, some of these made me wish I would rather have died than to have had to experience them over again. And yet the deepest sources of my suffering were. The limitations that I found were put upon my public life and my personal life. Everything I had achieved, all the work I had put into my life at that point was turned upside down. I feared never returning to work. I feared leaving my husband a widower, and most of all, I feared abandoning the children I had given birth to. All of these fears were wrapped up in the decisions I had made in order to live what I conceived of as a good life. They hadn't been bad decisions or unreasonable decisions. They were decisions, though, that would have profound ramifications on the lives of others. My darkest hours of suffering were isolating, both physically and spiritually, and it became easy for me to question whether God felt any compassion for me or whether God would express that compassion in a way that I could recognize. And in some of these darkest hours, I would turn to Scripture for hope of enlightenment. There were many Scriptures I looked at, but the story of Job is certainly the obvious choice for those of us who suffer. And I read Job's Lament here in chapter six. This is taken from the Niv version, coming from 1987. What strength do I have that I should still hope? What prospects that I should be patient? Do I have strength of stone? Is my flesh bronze? Do I have any power to help myself now that success has been driven from me? A despairing man should have the devotion of his friends, even though he forsakes the fear of the Almighty. Job characterized his own friends as undependable. So did Jesus. But as I read this portion of Scripture, this lament, I realized I couldn't make this complaint. In fact, I believe it was the compassionate care of others that convinced me that God had not abandoned me. So what did this care look like? It looked like friends and family who worked together to make and deliver meals five nights a week to my household for over 13 months. It looked like babysitters and daycare providers who volunteered to take care of my children so that I could rest. It looked like colleagues who provided opportunities for me to work on small projects at work. It looked like neighbors who drove me to my medical appointments. It looked like global neighbors who kept in touch by snail mail and email. And it looked like people who prayed without ceasing. I couldn't help but see the truth that if imperfect human beings could be so loving and so compassionate, that must mean that a perfect God loved me as well and felt compassion in my situation. I still do experience treatment side effects that are reminders of my mortality. I have painful neuropathy in my calves and feet and toes, and this haunts me almost every night, reminding me that it's not over. And yet I remain convinced because of this witness, that as I suffer, God suffers with me. What I hope has come across in these examples is that suffering in itself is not good. Still, suffering is an unavoidable part of life, and its source is deeper than human flesh. It cuts to the very heart of a person. The Christian witness is that healing is more than relief from a loss of autonomy, though it's a transformation of the whole person. However valuable autonomy might be, it's not at the heart of our being. Closer to the heart of our being is our capacity to respond compassionately to those who suffer. And when someone else is suffering unavoidably, then suffering with that person can be good. Compassion, as the early Christians show us, does not require expertise. It's often expressed in humble ways. And yet its effects can be enormous. When a person recognizes the dignity of someone who suffers a loss of autonomy and treats that person as someone of value, they show that suffering does not wipe out that person's meaning. Now, I can't say that I can predict the outcome of such a witness. Would it, for instance, reverse the legislation that surrounds Made? I don't know that I could say yes, and I'm not even sure that's really where we're going with an ethic of compassionate care. I think, rather, the aspiration would be to shift our culture to such a point that no one would ever even want to receive Made because people were suffering with them. It's a lofty goal, but whatever the outcome, I am convinced that we are called to suffer with those who suffer, to reassure them of their inherent value, and to witness to the truth that Christ lives, that death may die. Thank you very much. ***** This is the end of the e-text. This e-text was brought to you by Tyndale University, J. William Horsey Library - Tyndale Digital Collections *****