Читать книгу Healing Death - Christopher Levan - Страница 9

Most of our simple wisdom can be found on a T-shirt, if we look hard enough. Last week, as I was preparing to write the first pages of this book, on a clearance rack in the local general store, I found this: “Death: The #1 Killer in the World.” Perhaps that slogan captures the basic premise of my research: everyone dies.

When I taught undergraduates, I would begin a series of lectures on religious and philosophical attitudes to death and dying with two simple affirmations: “First, there is one thing every human being will accomplish. We will all manage to die. We can take great comfort in the fact that even if we are lazy, inept, devious or delusional, every one of us will complete the dying task perfectly. It’s a sure bet. Second, dying is the only thing you can count on doing on your own. No one joins you on this journey. People may stand by your side, even hold your hand, but unlike any other human act, including birth, you will walk through that door, naked, vulnerable and absolutely alone.”1

Perhaps death is the single fact which unites us as a species. Forget love or faith, family ties or collective memory. Our chief, unifying characteristic is our dying. Among the creatures on earth, we are perhaps one of the few species that knows we will end. Am I presuming too much? Who knows what a dog might think, for instance?2 But there is no doubt that as living beings we are shaped by our dying, and our high level of consciousness as creatures is a result of our keen awareness of our undeniable ending. From a very young age, we are led into that dark reality by fairy tales and the stories told in our sacred books. A quick read of such divergent stories as Hansel and Gretel and John’s gospel shows just how central are the themes of death and dying—our anxiety over the darkness and our search for freedom from the abyss. As we move from childhood into adolescence, we continue to test the edges of our fear about dying, through graphic novels and horror flicks—even experimenting with real life, role-play video games and battles. And all the Disney movies notwithstanding, at an early age, we realize that life does not continue “happily ever after.” It just ends. At some point in my life, my friends and I will journey out into the cemetery, and they will leave me there alone and go back to what is left of their lives. I will simply not be!

The T-shirt is right—death is the #1 killer in the world. It will catch us all, from presidents to paupers. No one will avoid it. And that finality causes unending anxiety and conflict. Who wants to think of their end, of not being? When we are young, we imagine we are immortal, but as we walk through year after year, we come to a rising awareness that the grim reaper waits for no one. And as the quantity of days diminishes, the quality of each passing moment rises—making our ending all the more poignant.

The vast fear and trembling we experience as beings fuels a whole industry of youth-crazed, anti-aging products and activities.3 Everything from skin cream to skydiving is sold to us as a cure for death. How strange, to expend such tremendous amounts of energy avoiding what we all know is inevitable! Much of our despair as teenagers or our depression as elders can be traced back to this great limit to human life. It was existential philosophy that reminded us how we are finite creatures. We either despair that we are never going to find meaning within the circumscribed time we have been given—which is perhaps the chief anxiety of the postmodern age—or we sense, as many millennials do, that this life is not worth the energy, given the finality of death that hangs over us.

And if we dissect our fear more carefully, we realize that it is not the actual event of dying that haunts us—though that can be disconcerting. The black hole of nonbeing waiting on the other side of death is a mystery that nags at us. Yes. However, most humans are more disturbed by the process of dying. As Woody Allen puts it, “I am not afraid of death; I just don’t want to be there when it happens.”4 It’s the way we must enter our dying that can cause nightmares. Will it be gentle and calm or pain wracked and unrelenting? Can I remain me, preserve some dignity at the end, or will I be stripped of my humanity, left helpless and groveling?5 As a pastor, I have seen far too many folk drool away their final days, sucking on an oxygen tube, wetting the bed and totally lost to themselves and others. How do I protect my heart and soul against such an ending? As my mind and body deteriorate, my chief concern is my dignity. And my dignity is knotted up with my personal agency and emotional integrity. Why can’t I just order up a mid-sleep, subdural aneurism?6 That way, I go to sleep whole and hardy and simply never awaken. The uncertainty of how we will die is the source of our anxiety.

And that is the dominant motivator for so many I have interviewed with respect to medical assistance in dying. We have watched our parents pass. Weeks, even years, of visits to the nursing home haunt us with images of lost souls who quite literally waste away their final months, sitting alone in a windowless hallway, mouths gapping, eyes vacant. “Not me,” we say firmly. How often in the past year of research has someone told me that they don’t want to be a forgotten vegetable in a lonely room? “Stand on the air tube” will be written above my bed.

We could describe this aspect of our fear as the decline of control. And while death is the ultimate act of relinquishing our personal agency, our dying is also intertwined with our human dignity and the loss of identity. No one wants to be reduced to a disease: to be nothing more than a cancer-ridden body. And we all fear being robbed of the most essential part of living: our sense of self; our ability to love and be loved. Alzheimer’s is the ultimate insult, because it robs us of who we are and yet does not kill us quickly. “I” am forced to continue living, even while the “I” is gone.

Then there is pain—perhaps the most important factor in the current debate. We all fear the end, because of the agony it might entail. No one should have to suffer unduly, and public sympathy is clearly opposed to prolonging a person’s anguish. How often have we told ourselves that our society condones putting dogs, cats, horses, our loved animals, to sleep rather than have them suffer? Our compassion says it’s “the right thing to do.” Indeed, it was because of the unrelenting suffering of several people, notably Sue Rodriguez and Lee Carter, that we have the legislation on medical assistance in dying. It was their pain that propelled their cases all the way to the Supreme Court of Canada.

While many people approach their end with relatively little discomfort, those who suffer will tell you of how it distorts everything. This we fear more than anything else: the lingering torture of a vicious cancer, as it eases its way through vital organs, the bone-on-bone grinding of degenerative arthritis, the mental anguish of seeing your body become more and more immobilized, while your mind is still vital and awake, the desperate grasping for every breath as one slowly suffocates, the loss of bodily functions. Everyone can imagine the horrors of a painful ending. And we fear it.

It is to alleviate this pain that we now have medical assistance in dying. And while some palliative care pain clinics offer solace and the promise of relief,7 many Canadians outside major urban centers have no access to such services. And those who suffer unrelenting pain will tell you that it is life-altering. It racks the body, but takes over the mind and soul as well. It clouds everything. As Betty told me, “Pain can cloud your mind so much that it fills your mind with a ‘pain fog.’”8

And aside from our fear of nonbeing and the pain associated with dying, there is yet another aspect of death that keeps us awake at night: the solitary nature of dying. It is as disturbing as the pain we might suffer. There is no way around it. I must enter into my end on my own. No matter how much I am loved, and how many companions I have made along this pilgrimage, death is a one-person show. And the singularity of dying haunts me. If my chief anxiety during life is the desire to be part of a community, to be accepted and included, then to be totally alone is a very frightening prospect. And this fact about dying retrojects back into our living a serious doubt over our ultimate meaning and purpose. What if I don’t really matter? If there is no grand finale to my life,9 is it possible I am nothing more than a haphazard, a basically pointless being? What if there is no heaven-sent plan, no providential plot giving shape and purpose to my life? Could I be meaningless? Is it possible that, in the end, I am not important at all, not part of anything majestic or grand, but just a singular, randomly contingent animal? The prospect of dying raises these troubling questions.

Dying, while it often follows a predictable pattern, is, nonetheless, a complex event, as our biological self interacts with our spiritual and emotional desires.10 Yet it comes to all, despite our will or ability as a species. It’s built right into the cycle of creation. The day we are born, we start the march toward our grave. And while advances in medical science and technological prowess have meant that human beings can manipulate greater and greater aspects of their living, there is no antidote to dying, no elixir of eternal life. As the song lyric puts it: “If ever I leave this world alive.”11 There’s no way out of this finite world except through death.

And it is, therefore, surprising that we have a reticence to talk about death openly. It’s the monster in the closet, the boogeyman under the bed. We don’t spend much time preparing for or thinking about it until it’s often too late. As the dark secret we all keep, it also holds a fascination for the modern mind as entertainment. So, even though death holds our imaginations, it does not invite casual conversation or reveal itself easily. So, we have to organize special gatherings and coffee encounters.12 Radio programmes invite listeners to tell their stories of grief.13 All this work to unmask the devil we call death.

Death Is Not the Enemy

From the beginning of my conversations with those who have worked through the process of medical assistance in dying, I was told a simple fact: death is not the enemy we imagine. During a conversation with Ethel Campbell, I heard how her daughter, Julia, who was assisted in her death on July 20, 2016, greeted death as a friend. Julia was living with ALS and had suffered much. The family was on a 24/7 watch. Julia went through the incredible pain of a disintegrated shoulder and other physical agony because of her disease. In the end, she could only communicate by blinking her eyes. However, with conviction, she telegraphed her desires, and through the dedication of her family, she was able to end her life with dignity. She dictated a letter to her sister, who read it on the day of her dying . . . family and friends gathered on the back deck and people could say good-bye and offer gratitude for Julia’s life while she was still able to hear them. Ethel told me that Julia’s death was a healing moment. Though painful and heart-wrenching, it was also a “gift of life back to us,” for it freed the family from the constant vigilance and care and sense of helplessness, as they watched their loved one decline.14 For Julia and her family, death was not the enemy but a welcome step on the journey of living.

It was from Ethel and many others that I began to understand that dying, an essential part of living, might also be a healing moment. And that fact raised many pastoral questions that became the guiding ideas of my research and writing. They are: If dying is neither an exceptional event nor the enemy of living but a part of life, how can we shape our encounter with death so that it becomes a welcome, meaningful end? Since death is clearly part of what it means to be human, shall we not apply as much calm intentionality to dying as we do to living? Is it not possible to walk through our dying in such a way that we have been healed?

In the end, the guiding thesis of this text became a simple affirmation. We can place the words “healing” and “death” together in the same sentence, for it is possible that, in our ending, we can experience a wholeness and completion which is quite restorative.

It may seem like a contradiction to talk of dying as a healing process. On the surface, they seem to be opposites. Isn’t death a defeat? It is the triumph of the shadows that threaten us: the victory of “that good night.”15 The light is snuffed out by the grave and the downfall of all efforts for curing the diseases that take away our life. How can there be healing in death? This book will explore the many ways in which our manner of dying can be a road to healing.

A simple example at this point will suffice to illustrate how we will explore death as a form of healing. How often have I stood at the graveside, saying good-bye to a beloved father or mother, and there in the circle of mourners is a space where the youngest son or the oldest daughter should be standing. They weren’t welcome. No one wants to talk about it, for fear of “upsetting” the ceremony, but there’s an open wound that needs addressing. And while it is not within my ability to heal it during the funeral itself, it is a pity that, in the time leading up to a parent’s death, we lacked the rituals or traditions which might have allowed for the reconciliation of this broken relationship. We don’t have the tradition or the means of acknowledging and forgiving our missteps and mistakes! Surely, at our end, this is one of our chief desires and tasks. Death wins, when we allow it to rob us of the chance to be reunited with the very precious, but broken, bits and pieces of our life.

In the past, the possibility of finding healing in our dying was confounded by the uncertainty surrounding the event. No one knows when it will happen, at least not with anything like precision. So, we let it slide. The young son will come home eventually. No need to push it or presume. That older daughter will come when “it’s time.” And planning a healthy, wholesome ending to our life feels either like capitulation to fatalism or a macabre self-absorption. Those who are dying don’t want to call attention to themselves, and those who are in the dying person’s circle don’t want to plan anything, lest they look like they are prematurely pushing the dying person into their grave.

Besides, dying is, by its nature, a confusing and conflicting time. Any bent or broken emotions we have carried during our life get crazier as we close in on the end. There are only a few noble examples of clarity in our dying: Socrates drinking hemlock with his friends around about his bed or Jesus speaking with his disciples in the upper room.16 But such examples appear to be exceptions—quite exotic and seemingly impossible to emulate. It’s easier to let things ride. Only a very few courageous ones can plan their ending with healing in mind.17

The new legal situation in Canada in which certain individuals can avail themselves of medical assistance in dying changes everything. It is now possible that some individuals could plan and prepare for their end with every expectation that it would happen within their control, that it would bring healing and offer greater hope and peace to those who are left behind. And while medical assistance in dying raises many complex ethical and spiritual dilemmas, it also offers the possibility to implement rituals and traditions that will bring healing to death. The latter portion of this text will examine what these rituals might be and how healing might take place.

A Good Death and a Bad Death

When asked, most religious leaders will confess that their best pastoral moments come during funerals. Most of us would much rather lead people through the valley of the shadow than down the aisle to a wedding.

At the graveside, we sense that matters are more real and human, since there tends to be less pretending when death is a visitor in the room. And we have been witness to both good and bad death.

During this research, I have been honored to hear the stories of the dying and have been given permission to make some of these tales public. Here’s a marvelous story of the good death. Kathryn told me of Sandy, her sister’s sister-in-law, who was living with ALS and was unable to continue.

Sandy decided to ask for medical assistance in dying. Having been given a permission and date, not only was she able to meet with friends and share some final words, she was able to invite her grandchildren to join her for one last shopping trip. Sandy loved to window shop, and so they all went to the mall, relived memories of past trips, and did some serious people watching while reveling in the life that was so evident in passersby. These grandchildren told their grandmother how important she was, how much of a difference she had made in their young lives. Finally, Sandy’s husband joined them for lunch, and then Sandy went home to die, content she had closed the circle and left her offspring with one final memory.18

Can you picture this scene? It seems so simple and unremarkable, but alas, it doesn’t happen often. Perhaps we should take a pause here. Take a deep breath and ponder how unique and yet how important it is to praise an elder for their love. And more, to know that they have heard us. Imagine this! In Sandy’s case, this leave-taking was a lively dialogue rather than the less satisfying monologue that characterizes most funerals. A granddaughter sat beside her and spoke of her love. Of course, Sandy knew she was loved, but now her granddaughter knew that Sandy had heard clearly how important that was. Is there any better way to complete the circle of compassion?

A good death!

After Kathryn finished telling the story, I was blessed with a vision . . . this is how dying can be a healing moment. ALS finally killed Sandy, but she died a healed woman, leaving behind children and grandchildren, who did not deny death or pretend it away but who incorporated it into their living. The model of this good death gave me a vision of how we might establish a better ritual practice around our dying.

In tragic contrast, I officiated at a funeral many years ago, where everyone was speechless. The actual ceremony was not exceptional—a polished casket, a large crowd, many words of gratitude and a good measure of grief. It was the potluck after the internment that was unsettling. This woman had died as she lived, denying most facts and manipulating those around her to do the same. There had been no succession planning, no final reckoning, no farewells or forgiveness. Many of the damaging dynamics of the family had been perpetuated. I could taste the animosity sparking from one side of the table to the other. It was only after that I realized the seating had not been random—the family had quite literally lined up against each other—one side of the table refusing to co-operate with the other. There was a daughter-in-law who refused to take part in anything, an ex-partner of one of the children who had co-opted the role of host and made sure to stir the pot with old memories. No one could venture a reconciling gesture, and everyone spoke of the deceased in completely one-dimensional ways for fear of causing an argument. Rather than closing the circle and bringing resolution, the funeral was like the starter’s pistol shot announcing a new race of recrimination.

As I sat eating my scraps of ham, I thanked my lucky stars that I had only to offer a prayer at their dinner and did not have to stick around for the reading of the will, which one of the siblings had produced with great flair. Let the battle begin . . . again!

This was a bad death. There was no healing in this person’s dying, but just a perpetuation of the discomfort and hard feelings that had characterized her living.

Finding a Path to Healing

It is to offer alternatives to such a “bad death” that I present this text. Of course, human beings are not programmable. We cannot always avoid the contradictions and contingencies that cause us anguish and pain. Blind self-absorption and power-hungry enmity cannot be cured by a few words, no matter how well chosen. Likewise, the bent dynamics of a family will not be healed by medical assistance in dying. After all, people spend a whole lifetime creating their own unique problems. The few brief days preparing for death will not alter those troubles very much. But, perhaps some broken relationships can be restored with adequate planning and reflection.

This text is offered as a guide to the current new situation. As mentioned above, it posits the possibility that death can be a healing moment. To explain this proposition, the first chapter will lay the groundwork for the current legislative and pastoral situation. There are essentially five sets of facts to consider as a background to the thesis that dying is a healing moment in human living. First, we must take into account the historical background to the new legislation, Bill C-14. To do this, we’ll explore a brief history of the two legal challenges which resulted in a change in the Criminal Code. In the second place, it is essential that we familiarize ourselves with the actual regulations that govern medical assistance in dying. It may come as an unsettling surprise what is and what is not actually covered by this legislation. A third “fact,” is the role health care professionals play in implementing medical assistance in dying. The legislation has been written to place a great deal of discretion and responsibility on their shoulders. And, currently, the response from medical professionals has been inconsistent across the country. A fourth factor raised by some people I have interviewed is the structural discrepancies and inadequacies faced by those who seek medical assistance in dying. This is such a new “procedure” or “service” that we do not have a consistent way of implementing and supporting it. Our health system has been oriented in the opposite direction: the preservation of life. To contemplate and plan for death runs against the grain of much health care training, and consequently, it appears initially more like a defeat than a solution. Thus, currently, our institutional and personal resources are not oriented to assist with it. Finally, any text exploring how death can be a healing event must consider the cultural and spiritual resistance to ending life. Our culture has been shaped by a religious stream that has condemned the intentional ending of life.

And this fifth fact becomes the subject of the second chapter, in which I will examine the Abrahamic religions: Judaism, Christianity, and Islam, and their respective responses to medical assistance in dying. It has been a tradition for over 3,000 years that the belief in an all-powerful Creator has meant that believers would not transgress the final divide and presume to end their lives before their appointed time, as if they were beyond the Creator’s control. Recently, some Protestant churches have nuanced this position with pronouncements that would allow for some exceptions, notably abortion and now medical assistance in dying.19 This chapter will take a closer examination of a position, taken by the United Church of Canada, which promotes itself as a “balanced” position.20

Moving from the explicit theological objections to ethical propositions, the third chapter in this book will explore how the advances in medical technology have considerably confounded a neat distinction between living and dying. The argument advanced by some conservative religious traditions that we should not “play God” by ending life prematurely or intentionally, is either unaware of or unwilling to admit the fact that we have long passed the time when God was the singular agent involved in our living and dying. Modern science has pushed the boundaries of life in so many ways that it becomes difficult to determine when, if ever, a divine hand is involved in closing down our living. Moreover, there is considerable doubt when our quality of living is more suitably called a stage of our dying. And the real question becomes at what point, and to what extent, do we help the natural course of dying to take over?

Having advanced the argument over dying to this stage, I will propose in the fourth chapter my central thesis in its complete form. By making a distinction between “curing the disease” and “healing the illness,” I will advance the argument that we can “heal” people as they die. Using a personal experience, I will argue that all human beings die of a disease . . . no matter the interventions of our medical system, eventually one disease or another will win. But the illness, which is the sociological and emotional condition imposed by the disease, can be healed even at the moment of death. Alas, most of our resources in the health system are used in trying to cure the disease, and very few are left over for the very important task of healing the illness.

In chapter five, I will outline the best arguments that favor medical assistance in dying, while in chapter six, I will outline a few general arguments against it. In this latter chapter, I will suggest that medical assistance in dying is a lamentable progression of our society. There is little question that the current legislation gives priority to individual rights over collective values, and that poses problems not simply for the way we shape society, but also has the unintended effect of placing some specific groups within society in a more vulnerable position. Once we have breached the unassailable ultimateness of life and made it a contingent choice, some vulnerable groups are placed in jeopardy. And as we move forward, some attention to this new dynamic is necessary. How do we place limits on the subjectivism that has been legitimized by this legislative change?

Chapter seven offers a few practical suggestions for pastoral care. Gathering the best advice from those who have passed through the process of medical assistance in dying, we can make some initial suggestions about ritual and pragmatic steps that will ease the journey of our ending. We are still so new to this approach to living and dying that we are having to develop an entire vocabulary, practice, and approach, to capture it with both dignity and efficiency. Currently, we are fumbling and clumsy in how we speak and administer medical assistance to help people have a healing death.

I conclude this text with a story that acts as an affirmation about the underlying principle of the Abrahamic tradition, which has always posited a “justice beyond justice,” or what some biblical commentators call a higher righteousness.21 Put simply, there has always been a law of divine compassion and grace that defines all other laws. In the declaration that God’s will is for fullness of life rather than its longevity, practitioners argue that we must allow certain circumstances to grant exceptions to the seventh commandment, taking life. In this regard, I was struck by the clarity of Martine Partridge, a Canadian woman who recently ended her life with assistance and made this step because she cherished life so dearly. Hers wasn’t a capitulation to death, but a declaration of living. In a letter to her family and friends she said:

I choose medical assistance in death because I love and cherish life. For me life is to be lived as Thoreau described: “deliberately. . . . I did not wish to live what was not life, living is so dear. . . . I wanted to live deep and suck out all the marrow of life.”22

1. We are alone, in one sense. There is no other human being that walks with us through death. However, I am convinced by the United Church New Creed, which affirms that we are never alone: “In life, in death, in life beyond death, God is with us. We are not alone.”

2. One of the most moving commentaries on dying is a fictional letter written by a dog to his master and mistress produced by the American playwright Eugene O’Neill, Last Will and Testament. A great bedtime story.

3. See Kierkegaard, Fear and Trembling, in which he explains the process of coming to faith as the total relinquishment of self and self-will.

4. See: https://www.goodreads.com/quotes/2989-i-m-not-afraid-of-death -i-just-don-t-want-to.

5. One of the most haunting ballads about war is entitled “Green Fields of France,” written by Eric Bogle. We hear the haunting fear of how we die in the first verse, which is an introduction to a random soldier, Willie McBride, who died in Flanders. That verse reads: “Well I hope you died quick and I hope you died clean, or Willie McBride was it slow and obscene?”

6. Apparently, only about five percent of us will be granted the death during sleep scenario. The rest of us will face the grim reaper with eyes wide open.

7. See the groundbreaking work of a United Church member and doctor, Balfour Mount, in Montreal at https://en.wikipedia.org/wiki/Balfour_Mount.

8. Quote from an interview with Betty Mittler, June 2017, 10:20 a.m.

9. This is the haunting message of an old, classic music movie, All That Jazz.

10. One of the best explorations of the process of dying is found in Good Life, Good Death, by Christiaan Barnard.

11. The tune is sung by Flogging Molly.

12. Look up http://deathcafe.com/. There is a growing movement called “Death Café,” whose stated objective is to talk about death. “At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. Our objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives.’” See more at: http://deathcafe.com/what/#sthash.FofSqmoY.dpuf.

13. Maritime noon program CBC, May 18, 2017, 12–1 pm.

14. Taken from an interview held with Ethel Campbell on April 10, 2017, 12 pm.

15. Taken from Dylan Thomas’ poem: “Do Not Go Gentle Into That Good Night,” first published in the journal Botteghe Oscure in 1951.

16. There is nothing to equal the words of Jesus expressed in the gospel of John 14:1. It is on Maundy Thursday, and he spends his final hours before his crucifixion with his disciples: “Let not your hearts be troubled, believe in God, believe also in me.”

17. An excellent, modern version of the planned, noble death was written by Kelly, Chasing Daylight.

18. Comments recorded from a phone interview with Kathryn, May 10, 2017, at 9 pm.

19. See the position paper published by the United Church of Canada, “United Church Opts.”

20. See United Church of Canada, “Medical Assistance in Dying.”

21. See Brown, Birth of the Messiah, 73–74.

22. Martine Partridge, in a letter to her family and friends explaining her decision to seek medical assistance to end her life. Calgary Sun, June 16, 2017.