My father's death forever changed my relationship to life. Sitting at his bedside when his breathing stopped, I was awed by the transformations in his body: the deep relaxation that smoothed his furrowed brow, the look of pained concentration that slowly changed to wonder, the pearly translucence that radiated softly around him. I felt that I was witnessing a sacred event, perhaps even a miracle.
Ten months earlier, before he became bedridden with prostate cancer, my father had made it clear that he would not enter the hospital. If he was going to die, it would happen his way: He would be in his own bed, with the TV on and a cigarette and a drink nearby. I steeled myself for the worst, imagining that he would die a lonely alcoholic's death or that he would shoot himself if the pain got too severe, as he had often said he might. I relinquished the idea of a funeral because of his hatred of Catholicism, so there would be no end-of-life resolution, I thought sadly—more likely anger, perhaps relief.
But somehow my father died in peace, at home, surrounded by a loving family. He had made his peace with estranged relatives and with God. He had written a will, reconciled with the Church, and even helped plan his funeral. He had spent long hours recalling scenes from his youth, and a stream of dreams and hallucinations had opened up for him the possibility of an afterlife. His dying became a kind of party—sending out for his favorite foods, socializing with family, enjoying a few last drinks and cigarettes. And although my father and I did not say all the things to each other I had hoped we might, we walked his very last mile together, and that brought a lasting healing to our relationship.
The miracle of my father's dying occurred through the human agency of hospice workers—a chaplain, a social worker, and a nurse—as well as a priest with a soul of gold and a family who maintained a vigil until the end. My father did not die in pain, because he had been treated with morphine; nor did he die in fear, because he had confronted his anxieties; and he did not die alone, because counselors helped him reach closure with those dearest to him.
But as the reactions of friends who have lost parents made clear, my father's dying contrasted dramatically with the cultural norm. The hospice support was so unlike the more clinical treatment in a hospital. I began to wonder whether our society's neglect of the metaphysical dimension of death contributes to the suffering that attends our dying. Other ages and cultures have given more spiritual assistance to those confronting the mysterious passage from life to death. Unlike our society, they were aware that the dying process can be another stage of growth.
Just as we must master childhood, adolescence, and adulthood, dying presents its own challenges. Borrowing from the theories of Jean Piaget, Abraham Maslow, and other developmental psychologists, hospice physician Ira Byock—author of Dying Well: The Prospect for Growth at the End of Life and president of the American Academy of Hospice and Palliative Medicine—has conceptualized the landmarks in end-of-life growth: completing our worldly affairs, coming to closure in personal and professional relationships, learning the meaning of one's life, loving oneself and others, accepting the finality of life, sensing a new self beyond personal loss, recognizing a transcendent realm, and surrendering to the unknown. Viewed from this perspective, says Buddhist teacher Christine Longaker, 'dying becomes another stage of living, a very vital stage that can allow us to conclude our lives well.'
Yet the vision of 'a good death' in the company of loved ones has been eclipsed by a stormy debate concerning an individual's 'right to die' by euthanasia or physician-assisted suicide. This controversy is one reason for a renewed commitment to 'contemplative caregiving' by people who attend not only to the physical but also to the emotional and spiritual needs of the dying. Baby boomers transformed the way Americans give birth; Byock hopes they will transform how we die as well. 'We depathologized the concept of pregnancy and birth, saying that it was not a disease but a part of healthy living,' he explains. 'Similar things can be said about the end of life. We need not pathologize people in order to acknowledge their mortality. In fact, people can become healthy in their dying.'
As medicine has advanced to extend life, the boundaries between a 'natural' death and an artificially sustained life have blurred. This unprecedented juncture of modern technology and ancient religious belief has forced both medical doctors and 'soul doctors'—psychologists, clergy, meditation teachers—to ponder moral riddles: At what point should life support be removed? What are the limits of suffering, both physical and emotional, that an individual should have to endure? Do narcotics relieve physical pain but dull consciousness? What about 'passive' forms of assisted suicide that allow a person to die by refusing food and liquids?
As society debates these issues, caregivers like Byock must attend to more practical concerns, beginning with the treatment of physical pain. 'I help them deal with their bowels,' he says of his patients. 'They won't be thinking about what meaning their life had if they're worried about their bowels. Only when dying people are comfortable enough can their attention be drawn to end-of-life issues.'
Indeed, the lack of knowledge about pain management is a major problem for hospice caregivers. Thanks to morphine pumps, long-lasting morphine pills, and other techniques, we now have the means to control most forms of physical distress among the dying, Byock contends; nevertheless, the problem of pain endures. Part of the problem can be traced to the paucity of pain-management training among medical doctors. Some doctors continue to undermedicate with opium-based painkillers, fearing their patients will become addicted—surely a secondary concern for the terminally ill. Even religious beliefs can sometimes compromise pain management by fostering a sense that suffering is unavoidable.
Caregivers must also ask themselves when to end aggressive medical interventions. Psychiatrist M. Scott Peck, author of Denial of the Soul: Spiritual and Medical Perspectives on Euthanasia and Mortality, argues that important 'soul work' may actually be going on beneath the guise of a coma, senility, or Alzheimer's disease.
He warns that making life-and-death judgments about the quality of another person's life is fraught with ambiguity: Treatable depression can be mistaken for untreatable senility, for example. Peck points to medical ethics committees, living wills, and family discussions as important tools to help determine when and if to discontinue treatment.
Once the decision has been made to let nature take its course, new dilemmas may arise. Some people choose to hasten their death by refusing nourishment. Hospice workers fear their own cooperation in these cases might be misinterpreted as assisting suicide. Others turn to what is known as 'the double effect'—the use of powerful sedatives to relieve the rare forms of severe pain that don't respond to ordinary analgesics. While these narcotics aren't toxic enough to cause immediate death, they hasten it by deeply relaxing the person, inducing what Byock described to one of his patients as a 'twilight sleep' from which she would be unlikely to awaken.
For spiritual practitioners who have worked toward the goal of a 'conscious death,' pain medication is a quandary: Narcotics may put a person to sleep or dull consciousness, but pain also is a distraction from concentration and prayer.
Treating psychological anguish is an even greater challenge than alleviating physical pain, most caregivers agree. Our society prizes independence, autonomy, and control; people who are dependent on others may feel worthless and wish to end their lives.
Dale Borglum, director of the Living/Dying Project in Fairfax, California, tells the story of a woman dying of a brain tumor who had made an agreement with her husband that if she got sick enough and wanted to die, he would help her. But when she decided it was time, her husband had changed his mind. Borglum was called in to mediate.
'When I asked her why she wanted to end her life,' Borglum recalls, 'she said it was because she was burdening those she loved. When I asked her husband and her other caregiver if she was a burden to them, they both said it was a privilege and an honor to care for her and that they hoped she would live as long as possible. Then she started crying, realizing that it wasn't that she wanted to die but that she had felt like a burden. She died just two days later, but if her husband had given her the drugs he would have felt bad. This way there was a great deal of closure.'
Byock compares caring for dying people to caring for infants. We don't consider an infant to be a less valuable human being because it is physically dependent and incontinent, he says. 'Even a colicky baby, who cries continuously, is not left in isolation. What do we do with that child? We respond with unconditional loving and care, not just as a family but as a community.'
Still, feelings of worthlessness, of having lived a life without meaning, often plague the dying. All of us yearn to do one noble act before we die, says Christine Longaker. And there are certain final acts that a dying person might consider: donating an organ, changing one negative pattern, asking forgiveness for past harm, making offerings to religious or charitable organizations, or an act of 'dedication,' a concept found in many religious traditions, in which one's suffering and death are offered up for the benefit of others.
In her book, Facing Death and Finding Hope: A Guide to the Emotional and Spiritual Care of the Dying , Longaker tells the story of a hospice priest who had trouble counseling an elderly widow bitter over how friends and family had mistreated her. At the same time, he was called to help a young mother with four small children whose husband had died suddenly. When he next visited the elderly woman, he lost his patience, told her about the young woman, and suggested that she offer up her dying as a way to help. By the priest's next visit, Longaker writes, the elderly woman had been transformed, her whole being 'infused with radiant love' and her thoughts focused on how she could dedicate her dying as a way to alleviate the younger woman's suffering.
Many techniques and practices help both the dying and their loved ones achieve acceptance and completion.
But what of the unknown future that the dying are about to encounter? What, if anything, of themselves will remain? These questions can be a source of distress.
Fear of death demands respect, certainly, but fear should not prevent an exploration of beliefs about the afterlife. Indeed, confronting the 'psychospiritual' distress of dying forms the last two of the developmental tasks Byock has formulated: recognizing a transcendent realm and surrendering to the unknown.
To help caregivers assist the dying in this process, psychotherapist Elizabeth Smith, an associate professor of social work at the Catholic University of America in Washington, D.C., has developed a 'trans-egoic' model of intervention based on the work of Carl Jung and transpersonal psychologists like Roger Walsh and Frances Vaughan.
The psychological tasks involved in dying, explains Smith, are counter to the direction individuals have moved all their lives—toward construction of the individual ego identity that psychologists say is the definition of good mental health. But while strong attachment and identity formation may be the norm for healthy psychological development of the living, 'ego disattachment' and the development of a 'personal death perspective,' she says, are the work of the dying.
Clinicians can help patients move through the process of disidentification with the ego and reidentification with a transpersonal, or higher, self by helping them practice letting go of the roles that once defined them and that are naturally falling away in death—lawyer, bachelor, mother, musician—then identifying with the 'I' that remains. As the body disintegrates, caregivers might ask, 'Are you your hair? Are you your breast?' Cultivating consciousness of what remains, they might then ask the person if she ever had a mystical experience of union with the universe or a sense of what her future might be after death.
'There's not much you can explain,' says Joan Halifax, founder of the Buddhist center Upaya in Santa Fe, New Mexico, 'but there's a lot you can be.' Halifax formed the center's Project on Being with Dying to help physicians, nurses, clergy members, and others bring mindfulness to their caregiving. When she visits dying people, she leaves all her manuals, books, training, and ideas at the door and listens to 'what their hearts know.'
Music and meditative concentration—continuing after the dying person's breathing has stopped—may help the person make the transition to the next life.
In many traditions, the soul is thought not to leave the body immediately but to withdraw slowly; Tibetan Buddhists believe that it takes anywhere from 20 minutes to three days for consciousness to leave the body. Reading spiritual teachings aloud to the dead and repeating prayers or meditations are in many traditions considered essential to helping the newly released soul free itself of suffering and find its way in the afterlife.
Few cultures ever imagined sending their loved ones into the next world without some kind of 'map.' The landscapes of the afterlife are richly described in such manuscripts as the Tibetan Bardo Thodol, the Egyptian Pert em Hru, and the medieval European Ars Moriendi. These texts symbolically represent not actual places but what are called nonordinary states of consciousness, experienced by spiritual practitioners as well as those who have reported near-death experiences. Passing through hell, facing divine judgment, being reborn, reaching celestial realms, and confronting memories from previous incarnations are some of these states.
Despite the fears and confusion surrounding the euthanasia debate, it could contain the catalyst for a collective spiritual awakening. America is gripped by the 'disease of secularism,' Peck argues: Most Americans don't take religion, God, or their souls seriously. Our 'bland response' to euthanasia may be symptomatic of our having euthanized God from our lives, he theorizes. Deathbed experiences lend some credence to this theory.
Halifax tells of a successful lawyer with prostate cancer and no background in any religious tradition who arrived at Upaya depressed, his heart frozen, in despair because he felt he had wasted his life making money. On the threshold of death, he felt that he had ignored the great spiritual questions of life. After surgery slowed his cancer he returned to work, but he also attended meditation classes more frequently and began to help the dying.
Mystics of all faiths have cherished 'death wisdom.' 'Being with dying' is an essential Buddhist spiritual practice. The familiar refrain of 'dying before death' comes to us from saints and seers who became intimate with God before their deaths.
Byock has initiated a project in his hometown of Missoula, Montana, that will involve the entire community—from the mayor to local artists to schoolchildren—in providing care and promoting spiritual and psychological growth at the end of life.
Depressing? Not necessarily. 'The most beautiful Americans I've been around,' says Dale Borglum, 'are people who are almost dead. They're not busy being lost in their identities—rich, poor, fat, smart, needy, Buddhist, the adult child of an alcoholic. Those things aren't too important when you're dying and you're whittled down to an essential level of being. If we can carry our identities a little more lightly before death, so much the better. That's what the dying teach the living.'
Pythia Peay is a columnist who writes on psychology and spirituality for Religion News Service and a contributing editor for Common Boundary. Adapted with permission from Common Boundary (Sept./Oct. 1997). Subscriptions $24.95/yr. (6 issues) from Box 445, Mt. Morris, IL 61054.