As both an information tool and a means of communicating our feelings and experiences with patients, all Zen Hospice volunteers maintain a collective journal. The quotes throughout this article are drawn from those journals. Photographs are by Raja Hornstein.
In the light of dying, a few simple truths become clear. Death is a solitary experience. No one can go with another beyond the last breath. But having a friend present to help—as far as help can reach—is a great comfort.
Mr. Day, a humorous, dignified and articulate seventy-year-old man had lived for some years on a park bench behind San Francisco’s City Hall. In November 1988, he was diagnosed with metastatic lung cancer.
In December, a Zen Center Hospice Volunteer began to work with Mr. Day. A home was found for him.
On April 2nd, at a training session for hospice volunteers, Mr. Day spoke of his imminent death. “It’s goin’ to be alright. I know that when I die, I’ll be inside, warm and dry and my friend here (the volunteer) will be there to shut my eyes.”
On April 10th, Mr. Day died at Laguna Honda Hospice. His volunteer was beside him. She shut his eyes.
We close the eyes. We wash the body. We hold the hand of a frightened patient. We do the simple and mundane: Make soup, change linen, give a back rub, listen to stories of a lifetime lived and now ending. Nothing special. This is the ordinary, everyday experience of caring for sick and dying people, just simple human kindness.
Last year Zen Center Hospice Volunteers provided 10,000 hours of service, caring for 125 people who died of cancer or of AIDS.
There is nothing new in our work. For 2,500 years Buddhists have contemplated sickness, old age and death as a means of being fully alive. Caring for the dying is simply an unfolding of this practice, a natural act of compassion, a fusion of spiritual insight and practical social action.
Our work in the Hospice has shown us clearly that residing in each of us is the capacity to touch the pain of others and to embrace it as our own. We have found that we can trust our innate generosity and natural wisdom to guide and sustain our actions. We have discovered that we can completely trust ourselves when we extend a loving hand. It is actually more a matter of the heart than of technical attention to our various Buddhist practices. As the Buddhist scholar Nelson Foster wrote: “The knack for dispassion that we (Buddhists) have acquired fails us more and more. We hurt with the many beings and as their sufferings continue to worsen, we will reach out, as a matter of course, like sleepers in the night.”
At Zen Center Hospice our primary concern is not so much conscious dying as conscious caregiving. While our approach allows for death as a vehicle for transformation, if the dying person is experiencing only resistance, anger or denial, we do our best to meet it with acceptance and kindness. Mostly we see how little control we have in the process, no matter what is happening.
We work with the poor of San Francisco. Those we serve are most easily relegated to the back of our minds, to the forgotten corridors of large institutions or to the isolation of single-occupancy transient hotels. Death isn’t always beautiful in these places. People don’t necessarily die with the name of God on their lips or “opening to the experience.” More frequently they die as they have lived, with some degree of resistance. Death is like that, it follows life.
We had dinner. Stella enjoyed the corn chip nacho concoction Frank made for her. Loved the carrot cake. Stella’s brother Rusty arrived and said he’d been drinkin’. He told a wonderful story about gettin’ in a fight with a baboon at the San Diego Zoo that involved lots of animation and gesturing! He is still telling stories as I write, it’s about 10:20 p.m. and Stella’s belly-laughing.—Katy
She is sweating intensely today. So different than yesterday when she seemed so strong. Is it possible things can change this fast? —Mary
Coughing is becoming quite a problem, it disturbs and distresses Stella and she is having difficulty spitting up the phlegm. At one point she says “There is no end to it, is there… there’s no end to any of it.”.
A little later, fretful, moaning and gesturing she says “I just want to get it over with”. Be patient, I say. You have a stubborn body. Tell me about it, tell me about it was her response. —Pat
At first glance we may appear to be miles apart from those we serve. Few of our clients have any interest in Buddhism. Social status and cultural backgrounds are often vastly different. Though most of us are students of some form of Buddhism, we find we must enter into this work unable to rely upon any of the spiritual principles or jargon we find safe and familiar.
When we were first opening the Zen Center Hospice, I was discussing my concerns with Stephen Levine. “Will it even work?” I wondered. “Well,” Stephen replied, “The first thing you have to do is let go of the Buddhism!” So here we find our ultimate practice in detachment—both to life and to our cherished ways of living it. All we are left with is the shared heart. Ed, one of our volunteers, wrote in the bedside record of a dying person he had been tending:
There was nothing left of Sid, she was practically a skeleton, some skin hanging from bones, nothing more. There wasn’t a mind you could relate to any more, no more sassy comebacks from this tough, hard-drinking New Yorker. She was days from death. She smelled terrible, literally decaying before me. There was nothing she could give back to me as in other relationships. But as I sat there holding her hand I felt very connected. I wanted nothing, yet I felt this deep abiding love . . . Who was I loving?
Ours is a chop-wood, carry-water kind of project. Volunteers attempt to meet whatever situation arises, no matter how mundane or profound, with the equanimity and kindness we aspire to in our practice. Changing bedpans or unraveling fears are both moments of intimacy, equally important. But no matter how long we may have been engaged in this work, we still find ourselves occasionally falling short. When strong emotions arise, all our experience and practice seems to go out the window.
I had been doing hospice work for years by the time I found myself tending to my dearest friend who was dying of AIDS. In his last few days, a strange dementia had developed which generally impaired his physical functioning and personality. Suddenly he was unable to speak, walk unaided or toilet himself. It scared me, but I didn’t realize how badly.
One night, trying to move him from the toilet to the bath and then back to bed, his confusion got the best of both of us. It was 3 a.m., I was exhausted, and there was diarrhea everywhere.
My mind scrambled. I got completely caught in the drama. I changed positions like Madonna changes wardrobes. First I was patient with him, then insistent; next I was patronizing, then authoritarian. I was the knowledgeable expert trying to logically convince this half-crazy man—anything to get him off the toilet and back to bed where I thought he belonged. I just wanted to help—and I wanted out from the fear I felt over losing my friend.
Then, out of what I had labeled a disoriented and confused mind he garbled, “You are trying too hard!”
Trying too hard indeed. I stopped. We both began to laugh and then cry. At that moment we had the sweetest, most tender and exquisite meeting, right there beside the toilet, completely helpless but together.
My six-year-old son Budi fed Stella small spoonfuls of ice cream as she enchanted him with made-up stories about her life. Sometimes children are the best caregivers. They know how to give and receive without being wedded to either position. —Frank
Pointing to her withered body and then to her brother, Stella said “I can’t get out of this thing as long as he is around . . . ”
Stella woke at 6 a.m. asking for help. She didn’t understand why she was still alive and suffering, she really wants to die. —Pat
Rusty had much regret about the twenty years he “wasted” as a brother, how he was unavailable, but after telling his sister he loved her this rough-tough cowboy said “You know a moment can change a lifetime.” —Frank
Was surprised to find Stella so much worse than yesterday. We had a good talk and she was real chipper. Her eyes were so clear. I told her my joke about the penguins and she laughed. It’s clearly time to say goodbye. I have her a manicure and did her nails one last time. —Katy
Rusty turned to me and blurted out, “Frank, I love you. Hell of a thing to say to another man, but things are happening to me, here with you and my sis, that I just don’t understand.” —Frank
Sojun Mel Weitsman, Abbot of Zen Center, was once asked by a student, “How can we help other people?” He replied, “Who is other people? It is hard to help other people. Help yourself.”
The student continued, “How do I do that?” Sojun added “by taking care of other people.” The student followed with, “What is self?” Sojun said, “If you take care of yourself and other people it will reveal itself to you.”
An issue we continually grapple with is how we can be of service without getting caught in “Helpers’ Disease.” There is a problem out there we think we must fix. The compulsive desire to “do something” is rampant in our society. Holding to our positions, we become identified with them, missing the opportunity for service, even exploiting those we wish to help.
Dotty’s son died of AIDS. Years later she relayed a story of how an overzealous bereavement volunteer from a large agency continued to ask her “how she felt about her son’s death.” Dotty, a rather private person, said simply, “I hurt. How else could a mother feel who has lost her son?”
Over several months the volunteer, with her support group’s encouragement, persisted in helping Dotty “get in touch with her deeper feelings.”
In relaying the story, Dotty said, “I felt such guilt and confusion in those days, not over the death of my son, but over my inability to give that girl what she was looking for and obviously needed.”
What is our intention in serving? It must be reexamined at each turn. We may see that the idea which initially motivated us to help—to have an effect on the AIDS epidemic, to help people open to their death, to repay the kindness my mother received when she died, even to become a more compassionate person—any of these may need to be dropped or transformed. If not there may be no service, just another agenda being played out, just more I and other.
Treya Wilbur founded the Cancer Support Community in San Francisco. She lived with and died of cancer. Drawing upon her daily experience, in an article for New Age Journal (September-October 1988), she spelled out what actually helped.
It helped when people supported me in following my diet. It helped when they didn’t criticize me when I needed a break. It helped when people seemed genuinely interested in what I was doing. I wish I had thought to ask for help with the insurance forms!
Sometimes I needed someone who would simply be there for me, hold me, someone who didn’t push me to emote or bare my soul. And sometimes I needed someone to be with me as I struggled with these fears, someone who could listen to me talk about pain, or euthanasia, suicide or death without retreating into their own fears or pressing me to think more positively.
I especially needed to be around people who loved me as is, not people who were trying to motivate me to change me to fit their favorite idea or theory.
Simple human kindness—in the end that is what is most needed. If we are open to it, each of us gets called on to assist at some point. A cool rag on the forehead, a comforting hand to hold, a basket of clean laundry—these serve enormously when they are offered with awareness and love.
A while back, students of a rather famous teacher phoned to say she was dying. They asked me to come and read her the Tibetan Book of the Dead. I explained that it is a text for monks who do those practices for many years, and might not be appropriate and even be frightening to the uninitiated. I asked why they thought this would be useful.
The student I was talking with responded, “She has been a remarkable teacher who has lived an outstanding life, and we want to help her have a remarkable death!” Silence. “But suppose she wants a perfectly ordinary death?” I asked.
As our phone conversation continued, I asked the student, “See if you can pay close attention to her requests without your ideas getting in the way.”
“But she can’t speak anymore. She’s completely helpless and bedridden,” responded the student.
I suggested she go pick up the phone nearer the teacher’s bed, and then we continued. “What is she telling you?”
“Remember, she can’t speak,” replied the student.
“Look closer, what is actually happening? Is she warm or cold? What are her hands doing? Are her eyes opened or closed?”
“She’s perspiring,” said the student.
“Fine,” I said. “Get a cool cloth and allow yourself to touch her gently, wipe her brow, go very slowly and pay close attention.”
“She’s grabbed my hand. I think she might be quite restless now. Her breathing has just changed.”
“Fine,” I said. “Let yourself take on her breath rhythm. Breathe with her, follow her, don’t guide her.”
After a time, I asked the student what she was feeling. After a moment’s hesitation, she replied, “Really, I’m quite relaxed now, and it seems that she is also. Her breath is quite steady. It’s faster but she seems at ease. I have the sense she really doesn’t need much from me right now.”
The phone conversation took almost two hours to complete. Two days later, the student phoned to say her teacher had died quite gently with little apparent struggle.
How can we allow death to be perfectly ordinary, to let go our need to control it as we have tried to control life? How can we refrain from pushing away anger and despair in our desire for clarity, good thoughts and tunnels of light?
I have witnessed people die in the anonymity of jungle refugee camps, the isolation of small hotels and in the sterilized surroundings of hospitals and institutions. I have seen some die in the loving embrace of friends and others screaming “I hate you” as their last words to family gathered at the bedside. Through all of these I have learned we have absolutely no control, but kindness is possible in any environment. Death may be beautiful, and it may not. We cannot die another’s death any more than we can lead their life. All we can really do is watch our reactivity and try to keep our hearts open.
One of our volunteers put it quite clearly. “There is an ordinariness in this work; when you are doing it right, you are so close to the ground there is no place to fall.”
Stella is sleeping, breathing is somewhat erratic. Her mouth is open and dry so I am moistening it periodically. Oh Stella, if only you knew what a gift you are. You always seem concerned about us. Even in your pain and discomfort you continue to be gracious. What lessons you have given us by just being you. —D.J
Turned Stella on her side to change her linens. I noticed her breathing had quieted to almost silence. We stopped everything: I spoke gently to her, told her we loved her and that we knew she loved us—that it was okay to leave if she wanted to. Her chest moved silently in three or four heaving gestures, her eyes seemed focused, and then all activity ceased. It was hard to believe at first. —Marilyn
Stella, in her last days and nights, was mostly full of staring or looking—I’m not sure which is more accurate. When her eyelids were not lowered so much that you weren’t sure if she was seeing or not, she would give a sudden quick high-pitched cough and her eyelids would snap open and her instantly focused eyes searched quickly for some object. Then you could be there with her, your eyeballs and hers, totally naked in clear spirit.
Sitting with her in death, eyes still looking or searching (still not sure which) unchanging in continuing the search . . . . —Peter
Zen Center Hospice trains and manages volunteers who provide supportive services to individuals going through life’s last stages. We believe there is an affinity between those who are cultivating “listening mind” and those who may need to be heard. Taking this as our focus, we are attracting volunteers with a meditative or spiritual practice. Each volunteer maintains a regular practice that encourages an inner maturity and balance so essential to being able to respond to the special needs of the terminally ill. We do not espouse any particular religious belief and respect all traditions for both volunteers and clients.
We serve the medically indigent and poor of San Francisco. Most clients have a diagnosis of cancer; all have a prognosis of six months or less to live. Frequently these individuals live alone and isolated, with little or no family or financial support, often “slipping through the cracks in the system.”
Presently we serve in the following settings:
Hospice at San Francisco General Hospital. Volunteers are matched one-to-one with clients, generally during a hospital stay. Services are then continued on an outpatient basis where volunteers may provide advocacy, transportation, bedside care or family respite.
Laguna Honda Hospice. This is a nine-bed model hospice in the city’s twelve-hundred-bed long-term care facility. Zen Center volunteers provide practical, emotional and spiritual support to patients and their loved ones. Sixty percent of those we serve have English as a second language. Most are very poor. Few have families.
The Maitri Hospice at Hartford Street Zen Center. This Buddhist home and hospice provides a residence and 24-hour care for people with AIDS in a community setting. Zen Center volunteers assist the community in the support and care of the six residents facing life-threatening illness.
Zen Center Guest House. Based on our experience elsewhere, we are opening our own hospice this year to serve our clients more comprehensively. Our city center Guest House will initially be open to two patients with the intent of expanding to a maximum capacity of six.
Zen Center Hospice is a nonprofit organization guided by an advisory board. It receives no state or federal funds. Support is provided through individual gifts and a few foundation grants.
The Zen Center Hospice training program consists of forty hours of comprehensive course work in the concept of hospice, grief work, pain and symptom management, family dynamics, communication skills, patient care, the AIDS epidemic and the spiritual dimensions of death and dying. A one-year commitment of five hours per week is requested. Volunteers receive ongoing support through biweekly meetings where client concerns, grief and loss are shared and further training is offered.
For up-to-date information about Zen Center Hospice, visit zencaregiving.org.
To see more of Raja Hornstein’s photographs, go to https://photo.rajahornstein.com/zenhospice/.