Living with Cancer
On Living and Dying
Even the wise fear death. Life clings to life.
I write this chapter on death and dying with the greatest respect for the reader facing the possibility either of his own death or of the death of someone he cares about. I have had too many friends die of cancer to speak to you in any other way.
For those who may have difficulty beginning to read this chapter, I want to say right at the start that I believe there are 12 critical things to know about death and dying:
1. There is skill, choice, knowledge, and control in death and dying just as much as there is in the fight for life with cancer.
2. Some people believe that death is the end; others that life after death is a certainty. My own belief, as Rachel Naomi Remen puts it, is that death is a mystery worth contemplating. Death for me is a mystery in the deep sense of the term: a real possibility exists that life in some form continues after death, and intriguing scientific literature supports the spiritual writings and the experience of many people who have had remarkable near-death experiences. Forceful arguments exist on the other side.
3. Whatever our beliefs about death, it is a fact that there is such a thing as dying well, and that we can consciously work toward dying well the way pregnant mothers work toward birthing well–and with the same uncertainty and absence of judgment about how we will actually fare in the event.
4. There is no single way of dying well, but an infinite variety of ways. A good death might be described mentally and emotionally as one in which–in the face of whatever biological experience we shall have–as much movement toward wisdom and healing as possible takes place for the one who is dying and for those who love him. A good death might be described physically as one in which pain and discomfort do not exceed what can be decently endured.
5. It is very useful to recognize the distinction between our fear of dying and our fear of death. This distinction then helps us focus first on specific fears we have about the dying process.
6. Most people are more afraid of being caught in interminable suffering during the dying process than they are of death itself. The reality, as we have seen in the chapter on pain, is that, in most cases, severe pain can be controlled and made tolerable.
7. Another fear people have is that they will remain alive when life no longer feels worth living, when they have become a burden to people they love, or when their dignity has been taken from them. This is a more complex set of concerns to respond to, but one important fact, emphasized by the great physician Eric Cassell, is that many people with cancer die within a relatively short time of having truly decided that they are ready to die.1
8. If death does not come to us at the point where we have truly decided that we no longer want to live, then we do have the option of taking our own life, if our religious beliefs allow it and if the suffering becomes intolerable. In the Netherlands, physician- assisted suicide for those facing a life no longer worth living is an acknowledged part of a public policy that requires the physician to follow a carefully prescribed protocol.2 In the United States, a great debate is currently taking place over whether physician- assisted suicide should be legal. Many American physicians do assistêpatients in dying if all that remains is a painful existence without dignity. Whether or not physicians are willing to assist us, many patients with life-threatening illnesses (AIDS patients have led the way in this) have simply learned what drug combinations are effective in suicide and have set those drugs aside for the day when life is no longer worth living.
9. It is critically important to make sure that you have the best possible medical and nursing care while dying. Those physicians who are wonderful when you are fighting for life may not be helpful when you are dying. The same is true of hospitals–a place that is superb for high-technology cancer therapies may not be the best place to die. One of the most difficult aspects of dying is the discomfort that may arise from many different sources. Helping a person relieve these symptoms and discomforts is a very high medical art that demands the interest, care, and attention of physicians, nurses, and caregivers. Finding the people in your community (they are often connected with a hospice) who are dedicated to this great human task can make a world of difference in the experience of dying. If you choose to die at home, the choice of home health care aides skilled in helping people die is at least as important as the physician and nurses you work with.
10. Some people are afraid that making practical estate arrangements or other arrangements for dying means that they have given up the fight for life. My general experience is that preparing for the possibility of death does not interfere with the fight for life at all–in fact it can enhance it, because you have taken away the worry of not having dealt with these very practical matters. Taking care of the things you want to take care of actually releases energy for the fight for life.
11. Part of preparing for death is giving some thought to helping loved ones with the grieving process. This can be tremendously important, because incomplete grieving often injures the rest of the life of a mate, a parent, or a child. In the process of a good death, a great deal of the mutual grieving of patient and loved ones takes place while the patient is still alive and participating. If this process takes place as consciously and fully as possible, the death can sometimes become, strangely, a great healing for all involved. While there is still grieving to do–a great deal of grieving, perhaps–it starts from a solid base. There are some excellent books on grieving as well as good grieving support groups and therapists. I strongly recommend learning about these resources for survivors.
12. Our culture’s attitude–in which death is a highly toxic subject and seen as a failure, either of the doctor or of the patient–is not only new historically but at odds with that of other cultures. In many cultures, dying is surrounded by rituals in which everyone participates. For many centuries in the West, this was also so. Death was often seen as the culmination of a life, and people gave great thought to how they might die well. It is possible in our culture to detoxify death by contemplating it, seeing what others have thought and said about it, and by giving ourselves time to be with it. In the face of sincere contemplation and prayer, the toxicity with which our culture has surrounded death often begins to dissolve.
All of this leads to exploration of what benefits we and those we love may receive from death and dying. We know all too well what the pain and losses will be. We know all too well that some people die with great difficulty and suffering, while others die peacefully. The question is whether or not we can find anything of value, in the midst of pain and loss, from death. The answer of some wise people over the centuries, and of many in our time, is that it is possible to find deeply meaningful and important experiences in the midst of facing death. In the rest of this chapter we explore some of these ideas in more detail.
The Literature on Death and Dying
One of the best ways to detoxify the subject of death and dying is to learn what wise people have had to say about their own experience with and meditations on death. In a sense, the classic and contemporary literature on death and dying provides a support group made up of some of the greatest saints, humorists, artists, cynics, and thinkers of all times. They speak across the ages to you–across time and space–with some very different ideas about how people have faced what William James called “the distinguished thing.” I know they have helped me. Perhaps they may help you, too.
One of the best places to start an inquiry into death and dying is The Oxford Book of Death, a great collection of poems, other writings, and sayings about death. I have selected a number of quotations from The Oxford Book of Death to give you a sense of how reading what wise people through the ages have said about death can transform our own attitudes.
The editor of the collection, J.D. Enright, is a well-known poet and critic. “Reading for this anthology,” he says, “I was moved to the thought that on no theme have writers shown themselves more lively.” A survivor of one of the Nazi prison camps, quoted in the anthology, echoed this view with his observation, “when in death we are in the midst of life.”3
“Death,” said Arnold Toynbee, “is the price paid by life for an enhancement of the complexity of a live organism’s structure.”4 There is a deep biological basis for this observation. As the Canadian naturalist David Suzuki explains, in primitive one-celled organisms, the original cell reproduced by dividing itself, so death was not inevitable. But complex organisms that could not simply divide developed sexual function as a means of reproduction. With the invention of reproduction, death appeared. Hence the very deep connections between birth, sexuality, and death.5 Montaigne put it simply: “Make room for others, as others have done for you.”6
Life is an energy-process. Like every energy-process, it is in principle irreversible and is therefore directed toward a goal. That goal is a state of rest. In the long run everything that happens is, as it were, no more than the initial disturbance of a perpetual state of rest which forever attempts to re-establish itself. …. Thoughts of death pile up to an astonishing degree as the years increase. Willy-nilly, the aging person prepares himself for death. …. It is just as neurotic in old age not to focus upon the goal of death as it is in youth to repress fantasies which have to do with the future.7
Many writers agree that dying is more difficult than death itself:
PHAEDRUS: But is death as horrible a thing as it’s commonly asserted to be?
MARCUS: The road leading up to it is harder than death itself. If a man dismisses from his thoughts the horror and imagination of death, he will have rid himself of a great part of the evil. In brief, whatever the torment of sickness or death, it is rendered much more endurable if a person surrenders himself to the divine will. For awareness of death, when the soul is already separated from the body, is, I think, either non-existent or else an extremely low-grade awareness, because before Nature reaches this point it dulls and stuns all areas of sensation.8
Contemporary Views of Death
Some of the most interesting contemporary sociological views of death are collected in a book edited by Edwin S. Shneidman, Death: Current Perspectives. The first contribution is from Arnold Toynbee, who wrote a beautiful essay on death in which he emphasized that:
This two sidedness of death is a fundamental feature of death. …. There are always two parties to a death; the person who dies and the survivors who are bereaved. …. When, therefore, I ask myself whether I am reconciled to death, I have to distinguish, in each variant of the situation, between being reconciled to death on my own account and being reconciled to it on the account of the other party. …. My answer to Saint Paul’s question “O death, where is thy sting?” is Saint Paul’s own answer: “The sting of death is sin.” The sin that I mean is the sin of selfishly failing to wish to survive the death of someone withêwhose life my own life is bound up. This is selfish because the sting ofêdeath is less sharp for the person who dies than it is for the bereaved survivor.9
Ernest Becker won the Pulitzer Prize for The Denial of Death, which argued that our whole lives are organized around fear and denial of death. Heroism, Becker argued, is a “reflex of the terror of death”:
We admire most the courage to face death. …. The hero has been the center of human honor and acclaim since probably the beginning of specifically human evolution. …. The hero was the man who could go into the spirit world, the land of the dead, and return alive. …. When philosophy took over from religion it also took over religion’s central problem, and death became the real “muse of philosophy” from its beginnings in Greece right through Heidegger and modern existentialism.10
Summarizing the work and thought on death from religion, philosophy, and science, Becker distinguishes between the “healthy-minded” argument that fear of death is not natural to man, and derives from repressed or unfulfilled living, and the “morbidly minded” argument that the fear of death is natural, what William James called “the worm at the core” of man’s pretension to happiness.
Jacques Choron goes so far as to say that it is questionable whether it will ever be possible to decide whether the fear of death is or is not the basic anxiety. In matters like this, then, the most that one can do is to take sides, give an opinion based on the authorities that seem to him most compelling, and to present some of the compelling arguments. I frankly side with the second school–in fact, this whole book is a network of arguments based on the universality of the fear of death, or “terror” as I prefer to call it, in order to convey how all consuming it is when we look it full in the face.11
Becker argues that the fear of death is biologically essential to the preservation of the species, and at the same time that continuous consciousness of this fear of death would be deeply counterproductive. He quotes the psychoanalyst Gregory Zilboorg: “If this fear were constantly conscious, we should be unable to function normally. It must be properly repressed to keep us living with any modicum of comfort.”
And so, Becker says, “We can understand what seems like an impossible paradox: the ever-present fear of death in the normal biological functioning of our instinct for self-preservation, as well as our utter obliviousness to this fear in our conscious life.”12
Another key point from this remarkable collection of contemporary views is Geoffrey Gorer’s concept of the pornography of death. Gorer brilliantly argues that, while sex was pornographic to the Victorians, death has been the pornography of our time.13
Contemporary Psychospiritual Perspectives on Death and Dying
It is difficult in 1993 to realize what a transformation the last 30 years have brought in American attitudes toward death and dying. And indeed this transformation speaks volumes for the broader transformation of American consciousness over this period of time. As Phillipe Aries wrote in his classic book, The Hour of Our Death:
Before 1959 when Herman Feifel wanted to interview the dying about themselves, no doubt for the first time, hospital authorities were indignant. They found the project “cruel, sadistic, traumatic.” In 1965 when Elisabeth Kübler-Ross was looking for dying persons to interview, the heads of the hospitals and clinics to whom she addressed herself protested, “Dying? But there are no dying here!” There could be no dying in a well-organized and respectable institution. They were mortally offended.14
Part of the best evidence for the transformation of the American mind through the 1960s, 1970s, and 1980s has been the opening of a substantial part of the population to an intense interest in learning from and caring for the dying. One of the foremost exponents of this work is Stephen Levine, author of a number of fine books on dying. Here is an excerpt from Healing into Life and Death:
Our intention is not to keep people alive or to help them die either. Our work seems to be an encouragement to focus on the moment. To heal in the present and allow the future to arise naturally out of that opening. …. We witnessed deep healings into the spirit of some who lived as well as miraculous healings in some who died …. clearly healing was not limited to the body. The question “Where might we find our healing?” expanded. It was [about] the healing of a lifetime. The healing we took birth for …. The deepest healing cannot be done solely in the separate. It needs to be for the whole, for the pain we all share. …. Seeing it is not simply my pain, but the pain, the circle of healing expands to allow the universe to enter.15
Levine expanded on this theme in an interview in Inquiring Mind:
IM: What do you mean by surrender?
SL: What we [Levine and his wife Ondrea] mean by surrender is softening and letting go of resistance, trusting the process. Many people misunderstand surrender as defeat. Surrender is actually the optimum strategy for living, including dying …. Surrender is really about letting go of the last moment and opening to the next. Of course everyone’s process isn’t the same. Some people work wonderfully with mindfulness mixed with loving kindness. Other people have so much regret about the way they’ve led their lives that we encourage them to work with forgiveness, forgiveness of themselves, forgiveness of those they reacted towards ….
We have seen people in severe physical discomfort who when they started to surrender their resistance–to enter into contact with sensation–experienced that multiple changing quality of the pain that they thought was so solid. Then they could begin to direct their analgesics into the areas where they were needed ….
IM: How much difference does it make for someone who is dying to have done a lot of spiritual practice?
SL: When a person has a sense of something greater than themselves, whatever it might be, it is very helpful when they are dying. Also, someone who has done spiritual practice probably has a little more concentration to bring to the meditations for pain, for heavy states, or for forgiveness …. People who have cultivated a willingness to go beyond safe territory–which means even beyond their practice–have an easier time with death.16
We can see in the work of the Levines the idea that the process of learning to live well is also the process of learning to die well and that cultivating a relationship with our innermost being serves us well at the time of death. Dennis Leahy, M.D. expands upon the idea of surrender as a way of healing into death: “[We have all] spent much of [our] lives in the conscious and unconscious cultivation of uniqueness. This process does not end as we begin to die. We see herein that in the process of letting go, our individualization may become more, rather than less complete. In this sense there is great hope.”17
The Questions Raised By Near-Death Experiences and Reports of Communications with the Dead
Many people who come on the Cancer Help Program have had near-death experiences that have changed their lives–experiences in which they almost died, or did die medically, and were then revived. Others have had experiences in which people they loved who died returned, after death, with messages that were deeply reassuring.
One of the most moving of these experiences for me happened with Kim and Sarah, the couple whose fight for life I described in chapter 1. I visited Sarah in the hospital shortly before she died. At one point I said to her: “It is absolutely not all right with me that this is happening to you, Sarah. But if you do die, I’d like to ask you a favor. It would make my life a lot easier if I heard from some friends who died that they were OK on the other side. So if you go, please try to come back and let me know you’re OK.” She promised she would.
Many months later I was getting a massage during a break in the late afternoon on the first day of a Cancer Help Program. I remarked to Jnani Chapman, the Cancer Help Program masseuse who was working on me, that I did not understand what was happening but that God seemed to be very present–that my body seemed to be filled with a strong charge of deep joyful and peaceful energy. It was a very unusual experience for me–I am not given to frequent experiences like this. Later that night, I got a message that Kim had called. I thought it might be to tell me of Sarah’s death. It occurred to me immediately that if Sarah had died, perhaps that was connected to the extraordinary feeling I had had of the presence of God. Perhaps that was Sarah trying to keep her promise to me. I called Kim, reached him, and during the conversation I told him of my experience. He said Sarah had not yet been in touch with him, but that he very much hoped she would.
The next morning I received a faxed letter from Kim as follows:
Sarah died at 2:15 P.M. on February 19. The night after her death I had the most extraordinary and vivid dream. I was in a hospital being restrained by three doctors. They were pleading with me not to go into Sarah’s room. They said her body had decomposed and that if I saw her in that condition it would leave me with a very unpleasant final vision. I became angry and pushed them aside and told them I had to see her. I ran to her room and opened the door. Sarah was reclining unclothed on her side, in the way of the odalisque in the painting by Ingres. Her body was radiant, full and perfect. Her hair shined like golden threads and her lips and cheeks were pink and glowing. I stared at her in amazement. The doctors were wrong: she had become perfect. I went to her bedside and sat down. Her eyes were closed and her limbs hung limp. I embraced her and as I did her chest heaved, her eyes and mouth opened, her lungs filled with air and she came alive. My heart soared and my eyes filled with tears of joy. Sarah looked up at me and said “Kim, I am not alive.” I paused and then asked her, “Is it good or bad where you are?” She looked at me and rolled her eyes in the way she would when I said something really dumb. She said, “Good and bad do not apply here.” I said, “Well, is it OK? Are you OK?” Sarah’s lips tightened and her eyes squinted as if to say, let me think about that one. Then slowly she nodded her head and said, “Yes, it’s OK, but I need some time to get used to it.” I held her shoulders and looked into her face and asked, “Sarah, when I die, will I be able to be with you?” She very simply said yes. Then her eyes closed and her body went limp again. I panicked and ran into the corridor and began a desperate search for the doctors. The halls were deserted. I decided to go back to Sarah’s room, but could not find my way. I began opening the doors in the corridor, but all the rooms were empty. I then awoke sitting straight up in bed.
Waves of sorrow, sadness, incompleteness and emptiness flow over me on a regular basis. But when I think of this dream it gives me a deep sense of comfort.
I wanted to share it with you.
Peace and Love,
It could well be that Kim’s dream was the vivid fulfillment of the wish of a grieving husband to know that his wife was well on the other side, particularly after I had suggested that perhaps my experience had been Sarah’s attempt to keep her promise to communicate with me. But anyone with an open and inquiring mind who works for sustained periods of time around people facing death cannot help confronting the significance of near-death experiences, based on both reports from patients and on the clinical and empirical literature.
Joan Borysenko provides a beautiful personal experience in her book Guilt Is the Teacher, Love Is the Lesson:
Many years ago …. I sat with a young woman who was dying. Her name was Sally, and she had been living with a rapidly growing and rare rectal cancer for the year or so that we knew each other. We worked on meditation and imagery techniques that helped relieve treatment side effects and brought Sally some peace. We talked of emotions, finishing old business, forgiveness, and grieving. We also talked of Sally’s concept of death …. that consciousness died with the brain rather than surviving in any way beyond the body.
When the day of Sally’s death came, I was visiting her in the hospital. I was scared because I’d never been with a dying person before and didn’t have any notion what to expect. Her parents had gone off to have lunch when I came, so I had about 45 minutes to sit alone with Sally. To my great relief, she seemed comfortable as she drifted in and out of consciousness. We just sat together in the silence. Then after a while I screwed up my courage and asked “Where do you drift off to, Sally? Your face looks so peaceful.” She opened her eyes and turned to look at me. Her eyes were full of love and wonder.
In a tiny, soft, and very amused voice, she said, “Well, you may have trouble believing this, but I’ve been floating around, touring the hospital. I’ve just been to the cafeteria, watching my parents eat lunch. Dad is having grilled cheese. Mom is eating tuna. They are so sad they can barely eat. I will have to tell them that my body may be dying but I’m certainly not. It’s more like I’m being born–my consciousness is so free and peaceful.” Sally faded out for a while and when she came back she told me: “It’s so beautiful, Joan. I’m drifting up out of my body toward a kind of living light. It’s very bright. So warm, so loving.” She squeezed my hand a little, “Don’t be afraid to die,” she said looking at me with so much kindness. “Your soul doesn’t die at all. You know? It just goes home. It just goes on from here” [emphasis added].18
I have wrestled for years with the question of whether I personally trust these beautiful accounts of the soul surviving death. For me the scientific literature on near-death experiences has deepened the question considerably, and tilted me toward a belief that there is a good chance that these accounts reflect a transcendental mystery.
The Scientific Literature on Near-Death Experiences
I find it intriguing that, at present, the scientific support for the survival-of-death hypothesis is much stronger than the scientific evidence supportive of any decisive “cure” for cancer among the unconventional cancer therapies. In other words, the evidence that we may survive death, while not conclusive, is certainly far better developed, and empirically more persuasive, than the evidence that any unconventional cancer therapy reliably leads most people to recover from cancer.
In addition, you cannot read the literature on near-death experiences and communications with the dead without slipping into realms of parapsychology that are difficult to evaluate and strain ordinary norms of credibility. That is, the science as reported is often reasonably good; but the implications of the scientific reports, if we credit them, lead toward a whole transpersonal reality that many of us (myself included) are not sure whether we can actually credit.
For many, the question of the survival of the personality after death is a key question. One perspective, often voiced by writers in the physical sciences, and one which echos many of the great spiritual traditions, is elaborated by Sir James Jeans in Physics and Philosophy:
When we view ourselves in space and time, our consciousnesses are obviously the separate individuals of a particle-picture, but when we pass beyond space and time, they may perhaps form ingredients of a single continuous stream of life. As with light and electricity, so may it be with life; the phenomena may be individuals carrying on separate existences in space and time, while in the deeper reality beyond space and time we may all be members of one body.19
Gertrude Schmeidler, an emeritus professor of psychology at the City University of New York, has contributed a sober evaluation of “Problems Raised by the Concept of the Survival of Personality After Death” to a multidisciplinary discussion of the subject.
Historians and anthropologists, she points out, tell us that the majority opinion of mankind has overwhelmingly held that the personality survives death, but an important minority has thought otherwise. Yet there is great diversity of view cross-culturally regarding what form this future existence takes. Still, Schmeidler finds “one common thread running through all the discrepant ideas of future existence: the idea that the surviving spirit is recognizable.”20 Says Schmeidler:
The only self-consistent and complete set of answers, so far as I know, consists of attributing all that occurs to the will of God and then stating that the will of God is unknowable and out of reach of science. This means that from the scientific point of view, the commonly held belief that a recognizable personality survives death has no coherent theory to support it. But this does not necessarily mean that the belief is false.21
Schmeidler then turns to some of the types of data that address different specific questions regarding the personality surviving death:
One large set [of data] answers the question of whether the self can, without the intervention of its own body, interact directly with other bodies. This is a subject studied by parapsychologists, who often divide it into two subtopics: ESP [extrasensory perception], or information obtained without use of the senses, and PK, [psychokinesis], or physical changes produced without bodily intervention. There is by now clear evidence that such interaction can occur. I will cite a single example, chosen from many others that seem to me equally strong [emphasis added].22
The example Schmeidler cites is of a technique of studying psychokinesis using an instrument called a random number generator (RNG), which records events that physicists consider truly random:
In RNG research, a subject is asked to push a button on a machine so that the next recording will show a particular change (e.g., a faster rate of particle emission on some trials; a slower rate on others.). This is an impossible task for our bodies. Our sense cannot tell us what the next random event will be and our effectors cannot change it. ….
Radin, May and Thomson …. summarized the data of all published RNG research with binary targets from the time this method was introduced …. to 1984. They found 75 reports, describing 332 experiments. When those experiments were evaluated as a whole, they showed success at rates astronomically higher than chance …. I suggest to you that this demonstrates that some nonbodily part of ourselves can interact with an object in the external world.
This in itself tells us nothing about survival, but it and other evidence for ESP and PK seem to legitimize the concept that our self (whatever it is) includes something that has properties which our body does not have. This in turn seems to legitimize queries about the possibility of nonphysical existence after the body’s death, and thus the survival concept.23
Schmeidler then discusses the other lines of research that consider the survival hypothesis more directly “but do not give such clear-cut results.”
Two of the methods study living persons. One is the near-death experience. …. Of those who revive after being considered clinically dead, perhaps half report having had vivid experiences while apparently dead. The experiences they report tend to have a good deal in common but are far from a complete overlap. Perhaps most impressive are the occasional cases where a person revived describes accurately events that occurred in a distant place during the time of apparent death.
The second method with living persons tests those who claim to have out-of-body experiences, that is, experiences of being at a location distant from one’s body. Some have accurately described events at that distant place. ….
One method studies the dying. …. Fairly often a dying person claims that a dead relative has come to help with the transition to an afterlife. ….
Other methods study the dead. …. Apparitions sometimes give information that is later found to be correct …. At least one careful investigation has found that many messages gave correct and specific information known to no one who was present. And psychics and mediums, trying to obtain messages from a dead person, have often reported accurate information that was unknown to anyone present and (more rarely) that was known to no one alive until an attempt to check the message confirmed its correctness.
Each of these lines of evidence can be explained away by one or another counterhypothesis. The commonality among near-death experiences is explained as a combination of physiological change and wishful thinking. All the cases of accurate information are explained as extraordinary examples of effective ESP. …. The explanations are ad hoc and seem forced; they often postulate more effective ESP than has otherwise been found. They are more intellectually satisfying than the survival interpretation, but whether they are more intellectually satisfying than the thesis of a spirit, separable from the body and surviving death, is still controversial.24
The beauty of this summary of the literature on near-death experiences and the survival of death is its neutrality. Schmeidler states the case exactly as I have come to see it: the solid ESP and PK literature clearly suggest that a part of us can function outside ourselves; this in turn is consistent with, but does not demonstrate, the legitimacy of the literature on out-of-body experiences; and both literatures then support, but do not demonstrate, the possibility that near-death experiences are more than simply physiological hallucinations; and this in turn suggests, but does not demonstrate, a rationale for accurate information coming from departed souls.
A number of separate investigators, as Schmeidler suggests, have found that between 35% and 48% of people who come close to death have near-death experiences suggestive of an afterlife. Poll data by George Gallup have also supported these figures.25
Karlis Osis and Erlendur Haraldsson did some of the pioneering scientific studies of near-death experiences of dying patients, reported in At the Hour of Death. They studied over 1,000 death or near-death experiences of patients in the United States and northern India in order to achieve a cross-cultural comparison of these experiences from two very different cultures.
They found, first, that the psychological experiences that patients had that were suggestive of postmortem existence were of shorter duration than hallucinations concerned with this life–just as ESP phenomena in general are of shorter duration than imagery related to this world. Second, they found these deathbed visions were mainly of dead and religious figures (by a 4:1 ratio), while only a minority of hallucinations in the general population concern dead and religious people.
This finding is loud and clear: When the dying see apparitions, they are nearly always experienced as messengers from a postmortem mode of existence. Of the human figures seen in visions of the dying, the vast majority were deceased close relatives. This is in agreement with our hypothesis that close relatives would be the natural guides in transitions to an afterlife. Hallucinations of mental patients and drug-induced visions seldom portray close relatives. The pilot survey revealed the most dramatic characteristic of deathbed apparitions: the ostensible intent to take the patient away to the other world. This was again found to be the dominantly stated purpose of the apparitions of the dying, as well as of come-back cases, in both American and Indian cultures….ê.
In the pilot survey, it was noted that patients responded to the otherworldly apparitions in a most surprising manner. They wanted to “go”–that is, to die. Some even bitterly reproached those who resuscitated them. Again, we encountered cases of such resentment in both countries. Nearly all the American patients, and two-thirds of the Indian patients, were ready to go after having seen otherworldly apparitions with a take-away purpose. Encounters with ostensible messengers from the other world seemed to be so gratifying that the value of this life was easily outweighed [authors’ emphasis].26
Patients who saw apparitions concerned with this world did not experience peace and serenity, while those who experienced “messenger” apparitions did. Patients who saw heaven or beautiful gardens reported strongly predominant feelings of peace, serenity, or religious feelings, while a small portion had negative experiences. Qualities of the scenes reported included brightness, intensity of colors, and great beauty. Some patients who saw no visions also became as serene and elated as those who saw messenger figures. And patients who were physiologically close to death had much more “complete” near-death experiences than those who experienced themselves as coming psychologically close to death.
We found that mood elevation near death resembles those ESP cases where a person will respond with emotions appropriate to a distant event, even though he is not consciously aware of what happened there….ê. There were some cases where patients ceased to feel pain. According to our afterlife hypothesis, the mind or soul may disengage itself from awareness of bodily pain and discomfort, as if gradually separating from its physical frame.27
The authors then review some of the alternative explanations of near-death imagery and experience. These include theories that the experiences are drug-induced; that they are related to brain disturbances caused by disease, injury, or uremic poisoning; that they are caused by lack of oxygen, or psychological factors associated with severe stress, or by cultural factors. In response, they argue that only a small minority of patients with these experiences had received hallucinogenic pain medications, and those that did had no greater frequency of afterlife visions than others. Brain disturbances in general either decreased or did not affect these experiences. Military research on oxygen deprivation, the authors state, does not support the anoxia hypothesis. And psychological factors, which can cause hallucinations, were not found to be related to phenomena associated with postmortem life.28
Cultural background, on the other hand, does influence near-death experiences. Indian patients, for example, saw a predominance of elderly male messenger figures while Americans predominantly saw younger female figures. But:
The phenomena within each culture often do not conform with religious afterlife beliefs. The patients see something new, unexpected, and contrary to their beliefs. Christian ideas of “judgement,” “salvation,” and “redemption” were not mirrored in the visions of our American patients. Furthermore, while we had many reports about visions of Heaven, visions of Hell and Devils were almost totally absent. …. We reached the impression that cultural conditioning by Christian and Hindu teaching is, in part, contradicted in the visionary experiences of the dying. It seems to us that besides symbolizations based on inculcated beliefs, terminal patients do “see” something that is unexpected, untaught, and a complete surprise to them.29
The core elements described above by Osis and Haraldsson give only a general sense of the near-death experience. Here is a composite near-death experience described by Kenneth Ring, another influential researcher, from his popular Heading Toward Omega: In Search of the Meaning of the Near-Death Experience:
The experience begins with a feeling of easeful peace and a sense of well being, which soon culminates in a sense of overwhelming joy and happiness. This ecstatic tone, although fluctuating in intensity from case to case, tends to persist as a constant emotional ground as other features of the experience begin to unfold. At this point, the person is aware that he feels no pain nor does he have any other bodily sensations. Everything is quiet. These cues may suggest to him that he is either in the process of dying or has already “died.”
He may then be aware of a transitory buzzing or windlike sound, but, in any event, he finds himself looking down on his physical body. At this time, he finds that he can see and hear perfectly; indeed his vision and hearing tend to be more acute than usual. He is aware of the actions and conversations taking place in the physical environment, in relation to which he finds himself in the role of a passive, detached spectator. All this seems very real–even quite natural–to him; it does not seem at all like a dream or a hallucination. His mental state is one of clarity and alertness.
At some point, he may find himself in a state of dual awareness. While he continues to be able to perceive the physical scene around him, he may also become aware of “another reality” and feel himself being drawn into it. He drifts or is ushered into a dark void or tunnel and feels as though he is floating through it. Although he may feel lonely for a time, the experience here is predominantly peaceful and serene. All is extremely quiet and the individual is only aware of his mind and the feeling of floating.
All at once he becomes sensitive to, but does not see, a presence. The presence, who may be heard to speak or who may instead “merely” induce thoughts into the individual’s mind, stimulates him to review his life and asks him to decide whether he wants to live or die. This stock-taking may be facilitated by a rapid and vivid visual playback of episodes from the person’s life. At this stage, he has no awareness of time or space, and the concepts themselves are meaningless. Neither is he any longer identified with his body. Only the mind is present and it is weighing–logically and rationally–the alternatives that confront him at this threshold separating life from death: to go further into this experience or to return to earthly life. Usually the individual decides to return on the basis not of his own preference, but on the perceived needs of his loved ones, whom his death would necessarily leave behind. Once this decision is made, the experience tends to be abruptly terminated.
Sometimes, however, the decisional crisis occurs later or is altogether absent, and the individual undergoes further experiences. He may, for example, continue to float through the dark void toward a magnetic and brilliant golden light from which emanates feelings of love, warmth and total acceptance. Or he may enter into a “world of light” and preternatural beauty, to be (temporarily) reunited with deceased loved ones before being told, in effect, that it is not yet his time and that he has to return to life.
In any event, whether the individual chooses or is commanded to return to his earthly body and worldly commitments, he does return. Typically, however, he has no recollection of how he has effected his “reentry.”30
A crucial question is whether or not these near-death experiences are simply hallucinations of the dying brain. This suggested a fascinating line of research, part of which was initiated by the cardiologist Michael Sabom, who was initially a skeptic regarding near-death experiences, in his classic Recollections of Death. Sabom took special note of the fact that one aspect of the near-death experience is that it is simultaneously an out-of-body experience. Ring summarizes:
Sabom made a diligent search for detailed OBE (out-of-body experiences) accounts from NDErs [those who have had near-death experiences] on the grounds that such reports provide one of the few avenues through which to secure data about NDEs that can be independently corroborated. …. If a patient whose eyes, let’s say, are taped shut, suffers cardiac arrest and has an OBE during which he later claims to have seen two physicians, one of them black, whom he has never met before, hurriedly enter the operating room to assist in the defibrillation procedure whose details he then describes in correct sequence, this is obviously an account that does not depend for its veracity on the patient’s say-so. …. This is precisely what Sabom has done in a half dozen incidents where his respondents have given him highly specific and sequential accounts of their OBEs while near death. By interviewing members of the original medical team involved in these cases, talking to family members who had pertinent information, and checking the medical records directly, Sabom was able to produce impressive if not conclusive evidence of apparently accurate perceptions during OBEs. In short, according to Sabom, patients were describing events they could not have seen given the position of their body and could not have known given their physical condition.31
The work of Stanley Grof, a highly innovative psychiatrist who did careful research using LSD in psychotherapy with dying cancer patients, gives further interesting insight into the phenomenon of near-death experiences. In Grof’s work, the patients he worked with, who were given LSD after very careful preparation and watched through the procedure, went through a set of phases that began with the very difficult experience of physical death and ended in an ecstatic experience of rebirth. When these patients had completed the death-rebirth experience, they were characteristically convinced that at the time of actual death their souls would survive, and they had no further fear of death.
The Great Art of Making the Dying Physically Comfortable
It is an expression of the malady of our time that while many people want to attend lectures on transcendent experiences in death and dying, far fewer people take the time to visit and sit with the dying, and fewer still are interested in the practical matters of making a dying person as comfortable physically as possible so that he and his family members have some chance to enjoy the last months, weeks, or days of life.
The reality is that practical knowledge is as important, and often more important, than an ungrounded spiritual impulse to assist the dying. As Sylvia Lack, M.D., told a training conference for physicians concerned with the care of the dying:
There is far too much talk in death and dying circles in this country about psychological and emotional problems, and far too little about making the patient comfortable. Any group concerned with service to the dying should be talking about smoothing sheets, rubbing bottoms, relieving constipation, and sitting up at night. Counselling a person who is lying in a wet bed is ineffective …. If people are cared for with common sense and basic professional skills, with detailed attention to self-evident problems and physical needs, the patients and the families themselves cope with many of their emotional crises. Without pain, well nursed, with bowels controlled, mouth clean, and a caring friend available, the psychological problems fall into manageable perspective.32
One of my favorite books on the practical aspects of dying is by Deborah Duda, A Guide to Dying at Home.33 In the chapter called “Getting on with It: Preparations and Homecoming,” Duda covers what you need to die at home. Here she lists everything from the doctor, medicines, and bed to such essential details as hot-water bottles, a dishpan for bathing, and drinking straws that bend.
Duda covers in detail how to choose a physician who will honor your wishes, how to work effectively with a physician, pain control, and giving shots or injections.34
One of the best health professional guides I have seen in this area is The Physician’s Handbook of Symptom Relief in Terminal Care,35 by Gary A. Johanson, M.D. of the Home Hospice of Sonoma County, California. The Physician’s Handbook is a loose-leaf binder with color tab-coded sections that cover common problems the physician, patient, or family member may encounter. In offering this compendium, Johanson writes:
The degree of success achieved in skilled symptom control will greatly influence how effectively caregivers and families will be able to assist patients in realizing their emotional, spiritual and social comfort in the final days of their lives.
The greatest asset in terminal care is a listening/caring approach. The greatest skill is knowing when it is appropriate to apply which palliative measure.
No matter how much we deny it, the fact is that conventional treatment often becomes inappropriate, and therefore poor medicine in the terminal patient. We who care for these patients are not off the hook simply by plugging along on conventional treatment pathways when it is no longer appropriate. ….
There is always something that can be done for terminal patients. None of us can expect to know all the techniques that have been developed in the area of terminal care. For our patients’ benefit and our own education, we should not hesitate to consult a reference or a colleague for assistance.36
This handbook is not only useful for physicians but also for patients and family members who want to be knowledgeable about the options that physicians and nurses are (or should be) considering. Many physicians have relatively little interest in or knowledge of how to provide the best possible support for a dying person. It is a very high and, in fact, noble skill of the healer. Having this information represents another area in which the patient or family member is able to work more effectively in partnership with physicians and nurses.
While Johanson’s Physician’s Handbook does an excellent job of covering the more technical aspects of symptom relief in dying, Duda provides a practical introduction to making the senses comfortable and to providing enjoyable experiences wherever possible.
Her discussion covers touch (massage, hair care, hugging, holding, and cuddling), moving the person, smells, cleanliness, creating beautiful environments, hearing (sound, music, reading), and taste and diet. The issues of intravenous (IV) feeding and dehydration represent an example of a critical area in which knowledge and forethought can make a vital difference in the dying experience. Says Duda:
IVs are used to nourish people who can’t eat or drink enough to stay alive. The decision whether or not to use IVs in terminal care raises again the question of the quality of life versus the quantity. Feeding the body cells by means of IVs often prolongs the life of the body. The cost is discomfort, less ability to move and the need to have a nurse. Dad said, “When I have all those tubes in I feel like a patient. When I don’t, I feel like me.”
The result of not taking enough fluids into the body is dehydration. The chemical imbalance created by a lack of fluids often causes a person to have a sense of well-being or euphoria [emphasis added]. It’s a relatively comfortable death. The main discomfort, dryness of the mouth and thirst, is helped by sucking on ice chips and clean moist washcloths. It generally takes only a few days for a debilitated person to die from lack of fluids.37
Duda is supported by medical experts in this opinion on dehydration. Johanson suggests a policy for IV fluid therapy:
In the terminal patient, the benefits of dehydration can be many, including sedation, decreased vomiting, and decreased urine output and secretions. IV fluids should only be used if hydration seems like it will improve alertness, decrease nausea, prolong life in a positive way, or otherwise provide true comfort.
Conscious withholding of intravenous and other supportive measures is not a question of “non-treatment.” Instead, it is a matter of what is appropriate treatment from a biologic, humane and spiritual point of view. Some patients suffer as much from inappropriate treatment as they do from the underlying illness itself.
In other words, IV infusion should be looked upon as primarily a supportive measure for use in acute or acute-superimposed-upon-chronic illnesses to assist a patient through a temporary period toward some recovery of health. To use such measures in the terminally ill, without such expectation of return to health, is generally inappropriate and therefore not good medicine. Such measures should ethically only be used if the treating physician is convinced they are clearly contributing to the comfort of the patient.38
Dying and Grieving
Dying and grieving are deeply interconnected, so it makes sense to treat them together. The dying person must engage in anticipatory grieving for the loss of himself. The family and friends who will be left behind have what is often as sharp–and sometimes even sharper–a grief to deal with. They, too, may do anticipatory grieving, and they will also grieve later.
Grieving is something that one can learn how to do. It is something that can cripple a life experience–or a dying experience–if it is drastically incomplete. Many cultures prescribe elaborate and effective systems of grieving. In the United States, we have lost most of these rituals–a very great loss, indeed. And so it has been the psychiatrists and other modern shamans who have taken on the job of helping us grieve our own deaths or the deaths of those we love.
One of the best known theories of the dying process has been presented by Elisabeth Kübler-Ross. In her famous book, On Death and Dying, she presents a theory of a series of stages in the human response to dying. The first stage of the dying process, according to Kübler-Ross, is denial and isolation:
Denial, at least partial denial, is used by almost all patients, not only during the first stages of illness or following confrontation, but also later on from time to time. …. These patients can consider the possibility of their own death for a while but then have to put this consideration away in order to pursue life. …. Denial functions as a buffer after unexpected shocking news, allows the patient to collect himself and, with time, mobilize other, less radical defenses.39
Actually, Kübler-Ross notes that the very first reaction may be a temporary state of shock, which is then followed by this initial response of denial.
The second stage for Kübler-Ross is anger.
The next logical question becomes: “Why me?”…. In contrast to the stage of denial, this stage of anger is very difficult to cope with from the point of view of family and staff. The reason for this is the fact that this anger is displaced in all directions and projected onto the environment at times almost at random.40
The third stage is bargaining:
The third stage, the stage of bargaining, is less well known but equally helpful to the patient, though only for brief periods of time. If we have been unable to face the sad facts in the first period and have been angry at people and God in the second phase, maybe we can succeed in entering into some sort of an agreement which may postpone the inevitable happening: “If God has decided to take us from this earth and he did not respond to my angry pleas, he may be more favorable if I ask nicely.”41
The fourth stage is depression:
When the terminally ill patient can no longer deny his illness, when he is forced to undergo more surgery or hospitalization, when he begins to have more symptoms or becomes weaker and thinner, he cannot smile it off any more. His numbness or stoicism, his anger and rage will soon be replaced with a sense of loss. This loss may have many facets: a woman with a breast cancer may react to the loss of her figure; a woman with a cancer of the uterus may feel she is no longer a woman. …. With the extensive treatment and hospitalization, financial burdens are added; little luxuries at first and necessities later may not be afforded any more. …. All these reasons for depression are well known to everyone who deals with patients. What we often tend to forget, however, is the preparatory grief that the terminally ill patient has to undergo in order to prepare himself for his final separation from this world. If I were to attempt to differentiate these two kinds of depressions, I would regard the first one as a reactive depression, the second one as a preparatory depression. The first one is different in nature and should be dealt with quite differently from the latter.42
In Kübler-Ross’s view, we can respond to the reactive depression with action–seeking to ameliorate the losses with word or deed. The preparatory depression, on the other hand, should not be met with any attempt to “fix it”:
The patient should not be encouraged to look at the sunny side of things, as this would mean he should not contemplate his impending death. It would be contraindicated to tell him not to be sad, since all of us are tremendously sad when we lose one beloved person. The patient is in the process of losing everything and everybody he loves. If he is allowed to express his sorrow he will find a final acceptance much easier, and he will be grateful to those who can sit with him during this state of depression without constantly telling him not to be sad.43
The fifth and final stage is acceptance:
If a patient has enough time (i.e., not a sudden, unexpected death) and has been given some help in working through the previously described stages, he will reach a stage during which he is neither depressed nor angry about his “fate.”…. Acceptance should not be mistaken for a happy stage. It is almost void of feelings. It is as if the pain had gone, the struggle is over, and there comes a time for “the final rest before the long journey” as one patient phrased it. …. While the dying patient has found some peace and acceptance, his circle of interest diminishes. He wishes to be left alone or at least not stirred up by news and problems of the outside world. Visitors are often not desired and if they come, the patient is no longer in a talkative mood. …. He may hold our hand and ask us to sit in silence. Such moments of silence may be the most meaningful communications for people who are not uncomfortable in the presence of a dying person. We may together listen to the song of a bird from the outside. Our presence may just confirm that we are going to be around until the end. We may just let him know that it is all right to say nothing when the important things are taken care of and it is only a question of time until he can close his eyes forever.44
While these are the five stages of dying for Kübler-Ross, it is often forgotten that she also accords a special place to hope throughout the five-stage process.
We have discussed so far the different stages that people go through when they are faced with tragic news. …. These means will last for different periods of time and will replace each other or exist at times side by side. The one thing that usually persists through all these stages is hope. …. In listening to our terminally ill patients we were always impressed that even the most accepting, the most realistic patients left the possibility open for some cure, for the discovery of a new drug or the “last minute success in a research project.”…. It is this glimpse of hope which maintains them through days, weeks or months of suffering.45
Other Views of the Process of Dying
Kübler-Ross’s vision of the stages of dying has many virtues, but it has been strongly criticized by many thoughtful professionals. Edwin S. Shneidman is one:
In the current thanatological scene there are those who write about fewer than a half-dozen stages lived through in a specific order–not to mention the even more obfuscating writing of a life after death. My own experiences have led me to rather different conclusions. In working with dying persons I see a wide range of human emotions–few in some people, dozens in others–experienced in a variety of orderings, reorderings, and arrangements. The one psychological mechanism that seems ubiquitous is denial, which can appear or reappear at any time. Nor is there any natural law that an individual has to achieve closure before death sets its seal. In fact, most people die too soon or too late, with loose threads and fragments of agenda uncompleted.
My own notion is more general in scope; more specific in content. …. My general hypothesis is that a dying person’s flow of behaviors will reflect or parallel that person’s previous segments of behaviors, specifically those behaviors relating to threat, stress or failure. There are certain consistencies in human beings. Individuals die more-or-less characteristically as they have lived, relative to those aspects of personality which relate to their conceptualization of their dying. To oversimplify: The psychological course of the cancer mirrors certain deep troughs in the course of the life–oncology recapitulates ontogeny [Shneidman’s emphasis].46
Another special observer of the dying process was Erich Lindemann, Professor of Psychiatry at Harvard, who studied loss and grieving for years before he developed cancer. Lindemann described his own process of anticipatory grieving in the face of his impending death from cancer.
First, he wanted information from his physicians, and he wrestled with all the complex questions about what a physician should and should not tell a patient and how the news should be transmitted. Second, he struggled with what to do with the feelings that his impending death brought up for him. Third, he found that the agreement with family and friends on the ways in which he would be remembered was of critical importance to him:
It can only be represented by symbols, such as a book, or–there is a building named for me in Boston, the Lindemann Mental Health Center, which means an awful lot. So you have something which continues your identity’s existence by a global attribute, a book or a building which then allows the survivors to remember those things which are pertinent to you, the particular person, just as at various stages of your anticipatory grieving you think about various aspects of that life which you are now reconstructing.
Now [this] …. was a revelation to me and led me to wonder, in looking at grief in patients, if they have similar tasks. They don’t write books, but with members of their families, or the nurse, they have confidential exchanges about the sort of things they did with other people. They like to be visited by a lot of friends, so long as they don’t feel too embarrassed about sharing their emotions, and would like to pick up items of their lives which they shared with the future survivors. And they will rub in these experiences with the family and friends, so they will be sure to remember when they are gone. So this constructing of a collective survival image of oneself which will still be there when one happens not to be there any more in the flesh is the core of grieving, which, if it is done well, is apt to be an admirable process–a fascinating process if one is lucky enough to witness it.
Then Lindemann comes to a beautiful and rarely described issue:
Every once in a while one hears about some person who is confronted with a severe illness and is not going to live, who is an inspiration to somebody else. And from our observations, it is these people who do such a good job of recalling their own lives and their own shared experiences, constructing an image which is a tenable image of a human being. ….
[Sometimes] there is not enough contact between the patient and his family. The family gets into a conflict over whether to stay or not, how much to share in the patient’s illness; whether these sometimes trite things which the patient brings up are worth the time of the patient and everybody else. And for the family, a very important problem may come up …. namely, that one does one’s grieving so well that one emancipates oneself from the person who is going to die and then has no relationship anymore. The [family] don’t know whether to visit or whether to stay away; if they try to pull themselves out of the bondage they will feel they are disloyal. This problem of a relationship which may be severed too successfully becomes a difficult one for the anticipatory griever. Sometimes patients who have a terminal illness come to terms with this illness, are all settled; and then when people still come, they don’t want to see them anymore. One wonders what is the matter with them unless one is aware of the fact that a process has been going on, and one has to tap at what phase this process is now.47
Lindemann describes how important to him it was to go and visit places that had had great meaning to him:
I really became hypermanic, in the sense that I raced around and wanted to do all the things that would be wonderful to do once more. In other words, see that people who are confronting death are not in an environment which is restrictive of doing possibilities; that they are still as mobile as is compatible with their ailments, and still as rich in possible experiences for a little while. I guess it isn’t silly to make up for the things you won’t have any more of later, and token fulfillment along that line can make an enormous difference.48
Grieving for Survivors
“A person’s death is not only an ending: it is also a beginning–for the survivors,” writes Shneidman. Studies of widows who have recently lost a husband show a heightened likelihood of death from alcoholism, malnutrition, and other conditions. It seems “grief is itself a dire process, almost akin to a disease, and that there are subtle factors at work that can take a heavy toll unless they are treated and controlled.”49
The death of someone we love can induce a response very similar to that found in those who have experienced a disaster such as an earthquake or explosion:
Martha Wolfenstein has described a “disaster syndrome”: a combination of emotional dullness, unresponsiveness to outer stimulation and inhibition of activity. The individual who has just undergone disaster is apt to suffer from at least a transitory sense of worthlessness; his usual capacity for self love becomes impaired.”50
Lily Pincus was a distinguished social worker who lived in England and wrote a book called Death and the Family: The Importance of Mourning.
All studies agree that shock is the first response to death. …. It may find expression in physical collapse …. , in violent outbursts …. , or in dazed withdrawal, denial, and inability to take in the reality of death.
Mourners often complain that they were not prepared for what it would be like: “Why did nobody warn me that I would feel so sick …. or tired …. or exhausted?”; “Nobody ever told me that grief felt so like fear”; “I wish I had known about the turmoil of emotions ….”51
The acute shock, says Pincus, usually lasts only a few days, followed by a controlled phase during which the mourner is supported by relatives and friends.
The real pain and misery makes itself felt when this controlled phase, and the privileges that went with it, is over, and the task of testing reality, coming to terms with the new situation, and the painful withdrawal of libido from the lost person begin. It is then that the mourner feels lost and abandoned and attempts to develop defenses against the agonies of pain. Searching for the lost person, an almost automatic universal defense against accepting the reality of loss, may go on for a long time. ….
Most people are not aware of their need to search but express it in restless behavior tension, and loss of interest in all that does not concern the deceased. These symptoms lessen as bit by bit the reality of the loss can be accepted and the bereaved slowly, slowly rebuilds his inner world. ….
As the bereaved becomes more relaxed, and tension, frustration, and pain decrease, searching may lead to finding a sense of the lost person’s presence…..
There are no timetables for what have been called the phases of mourning, nor are there distinct lines of demarcation for the various symptoms of grief which find expression during these phases. For the bereaved, the most alarming and bewildering aspects of grief are those in which he can no longer recognize himself, for example, the often irrational anger and hostility, which may be quite alien to the mourner’s usual behavior and may make him feel that he is going insane. …. They express the ambivalence of the mourner toward all these people but most especially, and painfully, toward the lost person who is causing him so much distress by his abandonment.52
For the shock that may immediately follow death, warmth and rest and a nourishing protective environment can be a real help. For the controlled period that Pincus mentions above, the support of friends and relatives can make a great difference.
The great challenge takes place as we begin to face life without the person we loved, and here the truth seems to be “the fundamental importance of being able to mourn and to `complete the mourning process’.” But, like the fight for life with cancer, there are no firm guidelines for how to complete the mourning process; each must be “allowed to mourn in his own way and his own time.”53
The mourning process, like the process of physical healing, involves the healing of a wound, a new formation of healthy tissue. In mourning, however, the cause of the injury, the loss of an important person, must not be forgotten. Only when the lost person has been internalized and becomes part of the bereaved, a part which can be integrated with his own personality and enriches it, is the mourning process complete. With this enriched personality the adjustment to a new life has to be made.54
Of all the chapters in this book, this has been the most difficult to write. Writing this chapter immersed me in the awesome and varied literature on death, dying, and mourning. On the one hand I felt grateful for the experience because I learned in greater depth things that I can pass on to others in the Cancer Help Program and through this book.
But the simple fact is that as I write these words, death, in my eyes, has not lost its power. It may well be that the soul survives death. I was skeptical of this years ago, but now believe it to be as likely as not. It is certainly true that we can detoxify death–that we can remove the taboos of thinking and feeling about it, and that great comfort and understanding can come from this process.
But even if I knew for a fact that my soul and the souls of those I love will survive death, I am not sure the pain of death and loss would be gone. I remember the story of an enlightened Eastern teacher who lost his child to death. His students came to see him the next day and found him crying.
“Master,” one said, “you teach us that all life is an illusion. How is it that you are crying because of the death of your child?”
“It is true that life is an illusion,” the master responded. “But the death of a child is the greatest illusion of all.”
I go back to the words I started the chapter with, the words of the Buddha: “Even the wise fear death. Life clings to life.” We have read, and can read, of those who overcome this fear. But most of us fear death. There is no shame in this. Death remains a great mystery, the central problem with which religion and philosophy and science have wrestled with since the beginning of human history. Acknowledging this, we can, perhaps, come to face it with greater understanding, more preparation, and greater love.
1 Eric J. Cassell, The Healer’s Art (Cambridge, Mass.: MIT Press, 1989), 210.
2 Peter A. Singer and Mark Siegler, “Euthanasia–A Critique,” New England Journal of Medicine 322(26):1881 (1990).
3 D.J. Enright, “Introduction.” In D.J. Enright, ed., The Oxford Book of Death, (Oxford: Oxford Press, 1987), xi.
4 Arnold Toynbee, “Life After Death.” Ibid., 3.
5 Maria Monroe, “Before There Was Death,” letter to the editor, Inquiring Mind 6(2):2 (1990).
6 Montaigne. In Enright, ed., The Oxford Book of Death, 2.
7 C.G. Jung, “The Soul and Death.” In Enright, ed., The Oxford Book of Death, 45.
8 Desiderius Erasmus, Colloquies, trans. Craig R. Thompson. In Enright, ed., The Oxford Book of Death, 46.
9 Arnold Toynbee, “The Relation Between Life and Death, Living and Dying.” In Edwin S. Shneidman, ed., Death: Current Perspectives (Mountain View, Calif.: Mayfield Publishing Company, 1984), 10-4.
10 Ernest Becker, “The Terror of Death.” In Shneidman, ed., Death, 15-6.
11 Ibid., 18.
12 Ibid., 19.
13 Geoffrey Gorer, “The Pornography of Death.” In Shneidman, ed., Death, 26.
14 Philippe Aries, The Hour of Our Death (New York: Vintage Books, 1982), 589.
15 Steven Levine, Healing into Life and Death (Garden City, N.Y.: Anchor Press, Doubleday, 1987), 4-15.
16 Steven Levine, interview in Inquiring Mind, 6(2):1-6 (Spring 1990).
17 Dennis R. Leahy, “The People.” In Eric Blau, Common Heros: Facing a Life-Threatening Illness (Pasadena, Calif.: New Sage Press, 1989).
18 Joan Borysenko, Guilt Is the Teacher, Love Is the Lesson (New York: Warner books, 1990), 15-7.
19 Sir James Jeans, Physics and Philosophy. In Larry Dossey, Beyond Illness: Discovering the Experience of Health (Boston: New Science Library, 1984), 139.
20 Gertrude R. Schmeidler, “Problems Raised by the Concept of the Survival of Personality After Death.” In Arthur Berger et al., ed., Perspectives on Death and Dying: Cross-Cultural and Multi-Disciplinary Views (Philadelphia: Charles Press Publishers, 1989), 201-2.
21 Ibid., 205-6.
22 Ibid., 206.
23 Ibid., 206-7.
24 Ibid., 207.
25 Kenneth Ring, Heading Toward Omega: In Search of the Meaning of the Near-Death Experience (New York: Morrow, 1985), 35.
26 Karlis Osis and Erlendur Haraldsson, At the Hour of Death (New York: Hastings House, Publishers, 1986), 186. © 1977 by Karlis Osis and Erlender Haraldsson. Reprinted with permission of the publisher, Hastings House.
27 Ibid., 188-9.
28 Ibid., 189-90.
29 Ibid., 191-3.
30 Ring, Heading Toward Omega, 36-7.
31 Ibid., 41-2.
32 Sylvia Lack, quoted in Deborah Duda, A Guide to Dying at Home (Santa Fe, N.M.: John Muir Publications, 1982), 150. Reprinted with permission from the publisher John Muir Publications. © Deborah Duda.
33 Deborah Duda, A Guide to Dying at Home (Santa Fe, N.M.: Hohn Muir Publications, 1982).
34 Duda, A Guide to Dying at Home, 102-10.
35 Gary A. Johanson, M.D., Physician’s Handbook of Symptom Relief in Terminal Care (Sonoma County, Calif.: Home Hospice of Sonoma County, 1988).
36 Ibid., iii-iv.
37 Duda, A Guide to Dying at Home, 128-9.
38 Johanson, Physician’s Handbook appendix 1.
39 Elisabeth Kübler-Ross On Death and Dying, (New York: Collier, 1970), 38-9. Reprinted with permission of Macmillan Publishing Co. Copyright Ø 1969 by Elizabeth Kübler-Ross.
40 Ibid., 50-1.
41 Ibid., 2.
42 Ibid., 85-6.
43 Ibid., 87.
44 Ibid., 112-3.
45 Ibid., 13-39.
46 Edwin S. Shneidman, “Some Aspects of Therapy with Dying Persons.” In Shneidman, ed., Death: Current Perspectives, 275-6.
47 Erich Lindemann, “Reactions to One’s Own Fatal Illness.” In ibid., 262-3.
48 Ibid., 265.
49 Edwin S. Shneidman, “Postvention and the Survivor-Victim.” Ibid., 412-3.
50 Ibid., 414.
51 Lily Pincus, “The Process of Mourning and Grief.” In Shneidman, Death: Current Perspectives, 402-3. Copyright Ø 1974 by Lily Pincas. Reprinted by permission of Pantheon Books, a division of Random House, Inc.