Being With Dying: Contemplative Care of Dying People Joan Halifax

Transcription

1 Being With Dying: Contemplative Care of Dying People Joan Halifax (A talk at the University of Virginia Medical Center, October 21, 1998, transcribed by Shelly Halley) Working with dying people was inspired by my grandmother, who was from Savannah, Georgia. In her elder years, she took care of dying people. When I was a young girl, we would spend summers with her. She would talk about being with dying people. For her, dying was very much a natural part of life. My grandmother was intimate with both the challenges of dying and the truth of death. She was a "village woman," like many women of the South who took care of their own and their neighbors. Hers was a skill that has been mostly lost in our communities. When my grandmother had a stroke, she was put in a nursing home. I remember visiting her and sitting beside her as she lay in a crib-like bed, begging my father to help her die. It was a situation I couldn't bear to see my grandmother go through. she finally died, and I saw her in her coffin, I promised I would do everything for the rest of my life to make dying better for others. As an young anthropologist I studied rites of passage, especially the function of initiation in indigenous cultures. I then looked at the psychosocial absence of rites of maturation in western culture. I knew very clearly there was a great absence in our

2 culture. I was working with the University of Miami School of Medicine which is located in a very culturally complex area. There were people in communities around the hospital from all over this hemisphere. These folks had very different belief systems than our prevailing one. Several of us served as bridges for the healers in those communities to allow them to come into the hospital system. One of the things that really disturbed me about the hospital setting was that dying people were marginalized. The old thought was that dying people represent a failure on the part of medical technology and skills, which focuses on curing. As a social scientist in a medical setting, I was looking not just at how people were marginalized for the failure of medicine to save their lives, but also at how medical education rarely, if ever, addressed the psychosocial and spiritual issues related to dying and death. That was 25, almost 30 years ago. The healthcare system has changed dramatically over the last decade, especially its economics. As a result, the best-hearted people in health care, who would like to give quality care, are often not able. But today at UVA I sat in a waiting room of the University Cancer Center with 30 to 40 people in. Health care professionals along side people with catastrophic illnesses spoke openly and mindfully about their experiences of encountering suffering and dying. They spoke to what was important in their lives. That was the question we asked. What is really important

3 in your life? Everyone participated; everybody said something. It was extraordinary. This group was facing the loss of two patients, people who were really connected to the group. I was very moved by the fact that this group happened in the middle of the highway, so to speak, in the middle of the waiting room.. I travel all over the country and visit medical centers where the kind of work that happened this morning would not even have been considered. "Who's got the time? This is not important." And yet, what I see in so many places is burned out and alienated health care professionals, individuals who got into this profession for good reasons, reasons other than the pocketbook. They really want to help other human beings be free from suffering. At a certain point working with sickness brings up issues that have nothing to do with the mechanics of curing, but rather with trying to help people improve their quality of life. In the early 1970's, I was to marry a psychiatrist and we worked together at the Maryland Psychiatric Research Center using LSD as an adjunct to psychotherapy with people dying of cancer. This project began in the late 60s. The care givers at the Research Center provided an incredible amount of attention to each dying person and their family. In the early 70s, physicians used to complain, "This just doesn't seem very efficient." Spending 17 straight hours

4 with a patient on the day when the patient took LSD, giving them a tremendous amount of support before and after the LSD session. This sounded like an unbelievable endeavor. But truly, this was a contemporary rite of passage, which probably would not have been needed at all had our society and culture been responsive to the question of death. My husband and I parted ways, but this work with dying people had touched me. I had been practicing meditation since the sixties. I realized that death was the most intimate experience of our life-more intimate than sex and birth. Our culture has trivialized sex. Most, perhaps all, of us cannot remember birth, though for the birthing mother it can be quite extraordinary. But death is a way that a community and an individual gather everything that was meaningful and meaningless in one's life and make a world of it. I wanted to continue working with dying people. So I studied and practiced and got ordained and became a pastoral person. This gave me as an anthropologist the ability to study a person as an individual. I could serve the individual and not turn them into a research project. Life became the project itself and death the project itself. So for many years I worked individually with dying people, without the benefit of mind-altering substances, realizing that death itself, the dying process itself, is a huge transformation in a person's consciousness. Whether it's autointoxication or diminution of the sensory

5 experience, just a plain fear of death or the steroids people take, or the body just unbinding. Death is a phase shift between living and afterlife. In that phase shift, everything is up for grabs. For the next twenty years, I sat with many dying people, bearing witness to the experience of dying and recognizing that most individuals do not die alone. They die within a community comprised of not only family and friends, but also caregivers and compassionate strangers. Most of the attention given in a hospice will be directed toward the dying person, but some goes toward the entire community undergoing the phase shift, this crisis, this loss. Instead of having patient-centered care, the hospice offers community-centered care. That was one of the first shifts I came to. I could not be a primary type caregiver while moving around and seeing many dying people. I saw, however, that the family had skills ready to be awakened. The medical team is often pressured to give types of care that the family could provide. So, I spent a lot of energy educating family members about the physical as well psychological and spiritual care that they themselves could give. We have to develop some quality of patience to be attentive to a dying person. With this attention, their wisdom can come forward. So a lot of my work has been about getting out of the way. I educate and encourage the caregivers, family members and friends, to step forward to

6 relieve some of the burden from the medical professionals, and invite them into this rare and priviledged experience of being with dying. When I moved to Santa Fe, I continued to sit individually, not institutionally, with dying people. The professional caregivers in the hospice and the Cancer Center at St. Vincent's noticed what I and others in my project were doing. They said, "Will you show us what you do? Will you help us learn how to do what you do?" So we started a program called "Partners." We set up a group of health care, dying people and family care givers: people who wanted to do this kind of work or be served by this kind of world. We trained the care givers in contemplative strategies for working with dying people. We hooked up with the hospice and now we have a program at St. Vincent's Hospital at the Cancer Center there. Once a week we would sit in council; we had a group of health care professionals and people with catastrophic illnesses. For an hour and half we would listen deeply to each other and we did it every week for one year. We addressed issues from fear to revulsion-not an easy thing to talk about, but one that came up in our group. People died and new members came in. It was extraordinary. It was very powerful to see the barrier between healthcare professionals and dying people melt away in the recognition that they were dealing with the same issues of

7 loss, grief and fear. Both family and professional caregivers felt burned out. Everybody was basically in the same boat. These meetings truly energized this big community. Thinking about how to teach more efficiently, I realized the need to educate community people. There is sex education in schools, but no death education. We've missed recognizing what in spiritual and faith traditions in all cultures is the most important experience in life. Both Socrates and the Buddha struggled to come to terms with the inevitability of death, the reality that we don't know when or how we're going to die. We wrestle with the reality that our relationship with our body is rather vulnerable, fragile. At the moment of death, nothing can help us-money, education, friends, loved ones, certainly not the body. We're going to lose everything in one moment, in an instant. How actually has death functioned in spiritual traditions? It's been kind of an incentive program. If you're Christian, death serves as an incentive to live a good and moral life. If you're Buddhist, death is an incentive not to make bad karma. But it's also an incentive to appreciate deeply just this moment and the preciousness of this life. So in looking at death and dying, I discovered that there are domains that are interactive and important to consider whether we're educating health care professionals or just you and me, just community people. One of them is the Contemplative.

8 The Contemplative refers to faith, religious, and spiritual practices that exercise qualities that exist in life. Those qualities are ones like mental stability, compassion, equanimity, and loving-kindness. When we have developed such qualities, they are present in us and we're able to become stabilized. Then some quality of insight might arise in us. To be a mature person in our culture means you are a wise person. You are not a slave to facts, but someone with insight; you are able to derive a sense of the world from a non-conceptual standpoint. It's not just knowledge, but insight into the nature of reality. So first we have the development of mental stability, and then we have insight. The third dimension in the Contemplative is a view-a view with regard to the nature of existence. A view carries with it questions like, "What happens at the moment of death?" "Is there an afterlife?" "What is the nature of existence of reality or the phenomenal world?" "Is there anything that is fixed or is everything characterized by transciency?" A view of reality is not a learned thing; it is derived from insight. Insight does not arise unless we have mental stability. Our view of death is very significant in how we relate to life and also to people who are dying. The first question we should address in terms of going into the health care field is the question of view. How do we view existence, life and death? Or, "What is death to you?"

9 I'll give you an example of a possible answer. In Buddhism death is the supreme moment for realization An adept practitioner has committed him or her self not to practice in the here and now. At the moment of death, during this phase shift between life and the afterlife, something very extraordinary happens to the mind where everything opens up. At this moment liberation happens in the deepest way. It's similar to the experience talked about by Jewish and Christian mystics and mystics from other cultures who have awakened to an extraordinary luminosity. So the Buddhist practitioner is not afraid of death, but looks on it as an opportunity for fundamental liberation-maybe not so differently than a Christian adept. This view of death organizes a culture's response to dying in a very different way. Most of us have been conditioned to view death as a failure, something horrible, characterized by suffering, loss and grief. We will do everything possible to allay death no matter what the personal, spiritual, physical, psychological and economic cost to the patient and family. We allow huge costs-anything to avoid death. Our education of people, then, really needs to happen before the diagnosis. Even though you think you have a view of death that is enlightened, it will mean very little to dying people or their families unless they've had a taste of that themselves. Only if your quality of presence and compassion allows so much trust and relaxation in your relationship that your view and behavior

10 around dying will reach medical caregivers. Our families and communities then will develop an open, patient and comfortable view of death as well. Eileen Boris Professor, Studies in Women and Gender Coordinating Editor, IRIS 227 Minor Hall University of Virginia Charlottesville, VA ; fax: