What does it mean to die wise? That is an interesting question for often the question is, “what does it mean to die well?” which usually means to die with as little discomfort as possible. A couple of months ago one of my directees encouraged me to read the book “Die Wise” written by Stephen Jenkinson, a past program director at a major Canadian hospital and a palliative consultant to palliative care and hospice organizations. In reading his book, Jenkinson caused me to do much rethinking about what it means to help people die well and wise. Let me share some of his key insights. When people are asked what would be a good life and a good death, Jenkinson noted two responses often come up. First, a good life is often seen as a long life (58), and a good death is a quick death (59). When Jenkinson explored what people meant by a quick death, he discovered that people wanted to die without having to experience the dying process...like dying in your sleep or dying instantly in a car accident. People wanted to die without knowing they were dying (60). But we live in a culture where most dying happens slowly meaning the dying process happens slowly. So when we ask the question, “how do we die well or wisely?”, we are really asking the question, “how do we do the dying process wisely?” You would think that this question would be a fairly easy to answer but it isn’t. We live in a culture that is all about managing death. For Jenkins, managing death means that we help people go through the dying process without the experience of dying, that we help them live “not dying” until death occurs. A major theme of Jenkins’ book, “Die Wise”, is unpacking how this contract of “not dying” plays out with the dying person, and how medical professionals, hospice caregivers, and family support defend this contract, making dying wise a very hard endeavor to nurture. A managed death is all about symptom management and pain control. When people are dying, the patient and their family are quite open to a visit from the physician or nurse. However, offer a visit from a nonmedical practitioner or counsellor, and the welcome vaporizes (27). Jenkins notes that “the patient and family are saying: The body comes first. I am what my body needs, and my body needs medical expertise” (27). The process of dying has been reduced to taking care of the physical body. There is little room to address the emotional and spiritual suffering caused by dying. These needs are dismissed. While there would be time to talk about dying, there is little space for this conversation for the focus is on physically dying well, dying with as little pain and symptoms as possible. One common aspect of managed death is the offer of palliative chemotherapy and radiation. Patients choose this option because they are promised “more time” in their life, but what does this more time look like? It is not the fantasy people imagine. Jenkins notes that what people can actually do with this more time ”bears no resemblance to anything most people have lived” (35). More time almost always means more dying (35), more time living with the reality of death in the rear-view mirror, and death getting closer and closer. Now that physical pain and symptoms are managed, these people have to live with the emotional pain of the dying process: fear, terror, dread, emotional numbness, anxiety, etc. (33). “This <reality> makes them prime candidates for sedation and antidepressants” (33). Jenkins stresses that we need to be more honest around this “more time” with patients so that they can plan more intentionally how they want to work at the dying process that is ahead, which will need to involve spiritual care providers, psychospiritual therapists, as well as medical professionals. Due to how well we medically manage death, we no longer have the nightmare of uncontrolled pain and unexpected death. Instead, “we now have a new nightmare of controlled pain and an unexpected wish to die, a wish that can’t be accounted for by worsening symptoms and can’t be soothed by reassurances that no one will be allowed to suffer. They are suffering. Dying people are suffering a torment we once thought would only come at the hour of their death. Now the hour of death is months long, sometimes longer” (44-45.) While suffering is part of the dying process, our culture has little tolerance for suffering. Rather, our culture follows, Jenkinson highlights, the religion of Quality of Life; the temple we go to practice this religion is the hospital, and the God we serve is the “demand to live” (50). Within this religion, there is no place for suffering; suffering is seen as an illness that needs treatment. Furthermore, we worship also in the temple of want. We expect the world to fill all our needs and desires. When our wants become a god in life, our death is the ultimate insult, “the ultimate frustration of our right to have things go as we deserve until we decide otherwise” (182). And yet, suffering is a natural part of life just as dying is. Because of our culture, we have a “diminished ability to suffer”, “little instinct or capacity for grieving,”, and a “headlong flight from discomfort, hardship, dying” (49). Life has become an entitlement or right rather than a gift and that causes everything that is experienced as negative to be something that should be removed or treated. It is important to realize that all experiences in life are a gift, including our times of suffering. The gifts of these negative moments only become apparent as people find gracious places to share these difficult experiences. This is why Jenkinson stresses that ’’people need to learn how to suffer” (54). What makes dying so hard to talk about is because there is so much resistance around talking about death and dying. Jenkinson claims that we instinctively know the following statement to be true although it sounds strange and unfamiliar: “knowing we could be dying somehow begins our dying.” He has found that the dying process begins for people when they realize they could be dying. For me, my dying process began the day I came to grips with the dying of my two hemophiliac brothers 20 plus years ago. This dying process has continued as I, as a minister, do many funerals, as I embraced my premature white hair in my 40’s as a sign of my aging, as I accepted my body aches and pains in my 50’s as signs of aging, as I observed my parents getting frailer as they entered their later senior years. As I embraced these signs as indicators of my dying, my relationship with dying and death has changed. Dying and death is not as scary. Jenkinson claims that because of this innate connection between “knowing we could be dying” and the dying process, our culture’s fear of dying has led to a cultural belief that people have the right to “not know they are dying” (62). He has found that professional caregivers will defend the belief that the patient has the right to chose how to die, even if it means dying badly, that is, living in denial of death right up to the point of death (63). Even though everyone knows they are going to die, our whole culture around caring for the dying is to act like this is not true, that no one should be told they are dying (78). Another reason people avoid talking about dying is how dying is framed. Dying is often seen as something that happens to us, like a disease. We often say that “cancer killed him”, that cancer is the enemy. But English grammar prevents us from saying “cancer died him.” Dying is not something that is done to us but rather something that we must participate in or do. (72). This suggests that people need a map or guide to help them participate in the dying process. From this point onward in the book, Jenkinson begins to develop a map of what spiritual care might look like for people who want to do well the dying process. Jenkinson notes that it is important to validate the endings that death brings. “It ends marriages and families as they were, workplace dynamics, plans for retirement, plans for childbearing, all manner of hopefulness, and on and on” (98). We should avoid euphemisms like "passed away", "gone over", or "no longer with us" that try to soften the endings associated with death. These endings are not transitions. Things will never be same again. Jenkinson highlights that he has found that there is a lot of pressure to find meaning at the end of one’s life. There is a religious belief that death is ground zero, that a judgement happens, that you will find out if your life was a worthy thing (99). From a psychological view, the focus is often on how well the patient is adjusting to the diagnosis, but what does adjusting well mean when someone is dying? It suggests that there should be a steady sense of self that is “suppose to prevail in spite of dying” (101). But is that realistic? All of these approaches to meaning-making and the dying process assume that death is the problem, that people have to chose between living and dying. If death is always portrayed as the enemy, then people have no choice but to fight it at every turn (103). However, “you won’t change what dying means by fighting it. It will always mean ‘loss’” (111). Instead of imposing meaning onto the end of one’s life, Jenkinson proposes another approach. Meaning in one’s end of life is something that is discovered as one contemplates one’s whole life. “We are heirs to the meaning of life and not its creators, from an indigenous point of view” (96). I would say that this is also true of the Christian faith. To find meaning using this framework, we have to help dying people wrestle with the way their life has unfolded. This means seeking to understand how the holy has been part of their life, and helping them wrestle and even hate the holy from time to time for having to learn the way things are (108-109). Part of this wrestling with God involves wrestling with the angel of death, not fight it for you will surely lose, but wrestle with it. The purpose of this wrestling dance, Jenkinson claims, “isn’t to get to the end, to have it be over, to resolve it, to let go of it, to accept it. The purpose is to move, to dance. Wrestling has an intimacy to it that fighting will never attain” (113). Wrestling helps you enter into the wonder and mystery of life, the place where there are no great answers, only great questions that cannot be answered (119). When we begin to wrestle with the angel of death, we begin to question the earthly hope that is often provided people who are dying. Hope, Jenkinson claims, is the soap of palliative care (119). Hope often becomes connecting to “hoping for more time.” He argues that hope is a mortgage; you are mortgaging the present for the sake of some possible future that might come to pass but just as likely might not (132). “As long as you are hopeful, you are never in the land you hope for” (132). More life is the reward of more time, so the hope goes, but more life at the end of life is very different than more life when you are not sick. It includes more dying, a lot more dying than you could ever imagine. There are lots of treatments to help you get more life, but there not many offers to teach you about how to be with more dying (133). Jenkinson possesses a similar attitude to “Quality of Life” as he does with hope. People score high on Quality of life inventories when they are living a life people have in mind for themselves: lots of autonomy, where they are masters of their destiny (143). While this inventory captures the adult dreams that we first envisioned in teenage and young adult years, the legitimate realities of dying are missing, the fact that our body, heart, and self are dying (145). Instead, Jenkinson argues that these Quality of life inventories reflect our addiction to competency and our cultural- wide mandate to be in control (148). Jenkinson notes that there is much resistance to the notion that there is a good way of dying that people can follow. Many professional caregivers believe that dying is very individual and that each person must determine what a good death is for them (174). But why do we hold such beliefs? We don’t let dying people determine how a doctor should treat them; rather patients look to their medical professionals for guidance. Yet, when it comes to the process of dying, we assume that the dying person knows best. And yet, Jenkinson has found that dying people “have no greater knowing than those who are not <dying>” (197). They are not experts; they are simply trying to survive. In fact, dying people need help from spiritual care experts to help them die well and wise. Another reason it is hard to talk about dying is that we are not taught about dying and death. It is all kept hidden from us. Jenkin notes, “if you think sex education in schools was an uphill battle, trying getting death education into curriculum” (154). As a result, all our instincts around dying have been domesticated and/or distorted by our death-denying culture. Now, in our current death phobic culture, we have many people dying not-dying, that is, physical dying without living through the dying process, and it is raising some challenging questions like, “is terminal sedation now an acceptable response to profound mental anguish at the end of life?” (160). Jenkinson argues that most of the suffering people experience around their dying is tied to our culture’s belief and practice that all emotional distress should be avoided in the dying process. As a psychospiritual therapist, what Jenkinson is highlighting is true for all negative emotions. The more people reject and avoid feeling anxiety, anger, hatred, depression, fear, guilt, shame, hurt, etc., the more intense their suffering becomes. However, when people are giving permission to share and explore these powerful experiences, meaning and insight begin to arise and their suffering lessens considerably. If our culture took a similar approach to the experience of dying, dying people would have a very different experience of dying and death, far less suffering. This intense suffering that dying people are experiencing is not because of death, as advocates of terminal sedation argue. Rather, Jenkinson counterargues, it is “our way of dying and not dying---that is what should be under scrutiny in the terminal sedation debate” ( 162) If you believe dying is traumatic, then the wheel of sedative salvation is already in motion (163). What is described as profound mental anguish is actually heart-brokenness from a spiritual point of view, but heart-brokenness is something our culture sees as suffering that should be treated. However, Jenkinson claims, “you cannot treat heart brokenness or suffering, nor can you manage them or contain them or make them less of what they are and must be” (168). Why do we ask dying people to put on a brave face when they are actually dying inside as well? Heart-brokenness is a condition of the heart that requires spiritual care involving listening and helping wrestle with the angel of suffering and death. For us to provide this spiritual care, we, as spiritual caregivers, must know this experience of heartbreak around dying deeply with all its dimensions. We must know what it means to die well, and what it means to “die while not dying”, the norm in our culture. We must also know experientially all the different aspects that make up the knowable mystery death not much known by our culture.
Questions to Ponder: 1. What has been your experience of dying and death? What aspects of this blog do you resonate with? What aspects do you wonder about? 2. When have you been able to help people share about their heart-brokenness? What did it look like to help them wrestle with the angel of death? 3. Jenkinson says that “we are heirs to the meaning of life and not its creators." How have you found this to be true, when you found that aspects of your life was part of a greater divine plan? 4. Jenkinson believes that the intense suffering from dying has been made worst by our culture's fear of death, and that this fear is a primary driving force to the use of Medically Assistance in Dying (MAID) in our current time. How has the common experience of death become a trauma that must be medicated?
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