Work-Life Wisdom from a Hospice Zen Master

Health Forum Journal, May/June 2002

By Joe Flower

In all the world, what is most wondrous?
In all the world, what is most wondrous is that man, woman, and child, though they see people dying all around them, do not believe it will happen to them.-Bhagavan Gita

He is, as you might expect, quiet. Not merely soft spoken, he allows his sentences to fall with a cadence that is at once thoughtful, calm, and precise. There are spaces in his conversation. He will say to himself, "What can I say that is useful here?" A big man with short-cropped white hair, he carries in his speech and person the gravitas of someone who has sat thousands of hours in meditation and, perhaps of equal weight, thousands of hours with people on the cusp of death.

Frank Ostaseski is the founder of the Zen Hospice Project in San Francisco and director of its educational arm, the Institute on Dying. His work has been featured in the Bill Moyers series On Our Own Terms, the PBS series With Eyes Open, the Oprah Winfrey Show, and numerous national publications. He co-chairs the Robert Wood Johnson Foundation's Last Acts Spirituality Committee.

It's a Buddhist teaching: Suffering is a fact of life. Face it squarely. Notice what is actually there. Behind its façade of exoticism--austere robes, inscrutable koans, incense, and incomprehensible chants--Zen turns out to be, at bedrock, hardheaded common sense about life and its problems.

Death is one of life's biggest problems. Whatever your faith, whatever your sense of an afterlife, most people would agree that we don't handle death very well in this culture. We mostly turn away from it.

In facing death squarely for 15 years, and in building an organization of people to do the same, Ostaseski has learned a lot that is valuable, not only about how we might deal better with death, but about dealing with the living in our institutions. In discussions at several of his workshops, then in my study at the end of a long cold day in February, Ostaseski talked about dealing with nurse burnout, exhausted physicians, spirituality, body language, mindfulness, compassion, and death. "People in this country mostly die in fear--and we can do something about that," he says. "You want health care reform? This would be health care reform."

Ostaseski: We started Zen Hospice in 1987 because people who had done this informally had found it to be immensely valuable--to both the person in the bed and the person serving. We began with indigent cancer patients, seeing them in their Tenderloin hotels, or on the park benches behind City Hall.

Then we established two central programs: a five-bed residential program, The Guest House, and a palliative care unit which we collaborated in founding at Laguna Honda Hospital, a long-term care facility.

We went there because it is what many would consider their worst nightmare, the belly of the beast: an old-style open-ward hospital, 30 or 40 people to a ward, 1,100 beds in all, the largest public long-term facility in the country. If you are elderly, if you have little or no insurance, if you have no one to care for you in San Francisco, this is where you wind up.

When we first helped to establish the unit, there was a lot of denial that death even occurred there. This was a geriatric hospital, yet I remember being told by one of the head administrators, "Nobody dies in my hospital."

Over the years, with the support of the administration and staff, we were able to transform a seemingly impersonal unit into a place of compassion and community. It had humble beginnings, just 28 beds in three large rooms. We turned the first room into a common room. We planted a garden on a ramshackle hillside just outside. It was the very first thing we did, the first team meeting--the staff, their spouses and significant others, their children. When everyone has their hands in the dirt, hierarchy tends to break down. People could see each other as human beings, not as roles. We were able to transfer that experience from the simple activity of making a garden into creating an interdisciplinary team.

Since 1988 that unit has become the jewel of the hospital. It's the reference point when JCAHO people and others visit. They point to the hospice as an example of what could be done throughout the facility. They see the therapeutic value of the sense of community that has been created here between the core staff, the volunteers, and the patients. They ask: How could that transfer to other units and other institutions?

It's a private-public collaboration. Weekly, we insert into that unit some 80 to 90 volunteers, from nine in the morning until midnight, and sometimes all night. These volunteers form a critical mass of compassion that transforms this unit.

Full Attention

The staff always wants to do good work. But sometimes their responsibilities discourage them from the practices of simple human kindness--sitting with a patient, for example, or supporting a family member.

Health care professionals are under tremendous pressure. They have very little time. But to give someone our full attention requires more discipline and focus, not necessarily more time.

One simple change is to sit at the bedside instead of standing at the foot of the bed. This expresses concern and care. It says, "I am not in a rush here." This is an important message: "I have some time for your problem; together we can work this out."

When we're taking a one-minute pulse reading, it doesn't require more time to look the patient in the eye. What if we looked at the watch for 30 seconds, and took the next 30 seconds and gave it completely to the relationship with the patient?

These simple gestures convey respect. Come into the room, sit down, speak less, listen more.

Engaging the Patient

Too often we cling to a patriarchal notion that we know what this patient needs, so we don't engage them in their own care. We are missing an enormous resource. It can start with a simple question: "What do you think is going on?"

We can bring all dimensions of the patient's experience to bear. For example, to include the spiritual life is to bring forth other resources. "Do you have some connection to a faith community? How does your faith affect the way in which you meet your illness? How would you like us to deal with your faith? How would you like to reach out to that community for support?" These are simple questions. You don't have to be a chaplain to ask them.

The basis of spiritual support is quite simple. It's a willingness to be there, not to turn away from the mysterious and the unanswerable.

In my neck of the woods--end-of-life care--this is absolutely essential. We cannot care for people at the end of life in the same way that we care for them at other points in their illness. They have a wholly different set of needs that have to be addressed. The first is to recognize that dying is not primarily a medical event. It's much more an issue of relationships--our relationship to ourselves, to those we love and who care for us, and to whatever image of God or ultimate kindness we hold in our life. Much of accompanying the dying is a matter of facilitating these relationships.

We must use the best that medicine offers, particularly in pain management and symptom control. But the medical model is simply not large enough to contain the experience of dying.

Palliative Care

Hospitals are set up on a model of curing. But there is a juncture after which curing is no longer the right treatment plan. A palliative care plan that aims at managing symptoms with the goal of a dignified death may be much more suitable. Hospitals are embracing more palliative medicine. A good example would be Beth Israel Medical Center in New York, where Dr. Russell K. Portenoy has built the award-winning Department of Pain Medicine and Palliative Care (www.stoppain.org). The University of California at San Francisco Medical Center has also developed such a program. It includes a "comfort care suite" where people can die in the hospital away from the tubes, machines, and noise of a typical intensive care unit.

Yet, in many hospitals, palliative care has not gotten the respect it deserves. All too commonly, the curative model simply fails people at the ends of their lives. Their pain is uncontrolled, their symptoms are not well managed, the psychosocial issues and the needs of the family are not well addressed.

The referral process is also important. Frequently, the referrals from hospital to hospice come very late. As a result, hospice programs have an average length of stay under 20 days. That is simply not enough time to work with the complexities of an individual's end-of-life care.

Exhausted Clinicians

A physician came to one of my workshops. Her training had exhausted her. It was designed to, actually. One of her jobs now, on the night shift at a major city hospital, was to declare people dead. She said it was very mechanical for her. She felt she was losing her humanity. Could I give her some Buddhist practice that would help? I told her that it might be possible to learn something about Buddhism in a short time, but maybe she should look to her own lineage, that of physicians, of healers. What could she find that might support her?

Months later, I heard that she was doing something interesting. When she made her rounds with her stethoscope, she also carried a bag with a special cloth, a candle, and a vial of sweet oil. She would make a small altar on the table next to the person who had died, with the candle, plus something that was special to the person. If there were family members there, she would talk to them. She would anoint the person, and sometimes say a prayer. It was a radical step for her.

I know of an orderly who works in an ER. After someone has died, maybe the chest has been split open, everybody leaves the room. The orderly is the one who comes in and bathes the body. He leans over to the person who has died and says, "You know, what's happened here is that you have died." He just speaks to them. He said he doesn't know if the person can hear him or not, but he figures it can't hurt. He says, "Now I'm going to wash your body with the respect you deserve." He takes his time and does it with great attention.

There are people making a difference in hospital systems everywhere. I hear about them just as often as I hear about the burned-out nurse or the exhausted physician. Hospitals need to identify these heroes as examples.

If you look at the literature on burnout and talk to lots of health care providers, as I have, it's rare that people say that the work itself burns them out. It's usually the structures within which they work--an unnecessary amount of regulation, inhuman schedules, a failure to recognize the very personal human needs of someone who is working on the edge of death day in and day out, with almost no support system.

I have seen things that help. Some progressive units have made a physical place where staff can have a quiet moment. Some units come together for a few moments of silence or prayers, to reclarify their intention.

When health care workers engage family members in the care of their loved ones, it not only empowers the family member, it buoys the health care worker. For example, in post-cardiac units, family members come in and learn how to do the cleaning, how to work with the new technology. This helps the nurse or other clinicians feel that they have something really important to offer other than just their procedures.

Most people got into medicine because they care. These are good-hearted people, and they are leaving their professions in droves, because they can't express their heart. They can't find a place for their own compassion to come forward.

Turning toward Suffering

In health care, we train people to turn away from suffering, instead of toward it. The word compassion means literally "suffer with others." That little word with implies an intimacy, a willingness to "be with." We have to be able to build an empathetic bridge from our own experience to others. If we never turn toward our own suffering, we become unable to make that bridge.

This notion that we should armor ourselves with objectivity, in an effort to protect ourselves from pain, is a ludicrous, bankrupt strategy. It just prohibits tenderness. It locks away the suffering of the health care professional until it rots them from the inside.

Maybe we can't open our hearts to every patient, but if we don't open our hearts to any of them, we become brittle and hard. Most importantly, we stop being able to listen.

Many hospitals have progressive programs that help their employees, patients, and family members reduce their stress. They are primarily programs in mindfulness and meditation--really just learning to listen intimately to ourselves--so that people have some way of moving toward their suffering instead of away.

This is a radical idea. It's like setting a new telephone pole: It's a little unstable at first. Fear arises and you may want to run. But if it starts to fall, don't run. The only safe place is right up close. You want to put your hands on it.

We're always running away from suffering, becoming overwhelmed by it, or repressing it. And it hits us in the back of the head. What happens if we go right up and put our hands on it, get to know it really well, become intimate with it? What do we know about our fear, about grief, our response to helplessness? Suppose, in a time when we aren't in crisis, we get to know our suffering a little, and begin to see the kinds of thoughts that come through the mind, the shape the body takes when we start to get afraid, so that we can recognize it before we get swept away by it. We might interact with it more skillfully.

Dealing with Death

We have rituals when people die in a hospital, but they are rather procedural. They don't serve to refresh anybody. In most cases the curtain is pulled around the body, there's a cursory bath, a tag is put on the toe, and the body is sent to the morgue, nothing more. On our hospice unit in the hospital in Laguna Honda, when someone dies, we say it's not an emergency. We take away everything having to do with medicine. We sit down with the person who has died. We bathe the body with respect, sometimes involving family members, at least involving the staff who have cared for this person. Bathing serves much more than its functional need. It also serves as an opportunity for people to say good-bye.

When the first patient died on the hospice unit, we had nurses who had just been assigned to the unit; they hadn't chosen it. So when this patient died, they imagined that they would just go about their standard procedure. One of my colleagues was sitting there at the bed. When the nurses saw my friend, they didn't know what to do. My friend said, "Wasn't he the most wonderful guy?" and one nurse said, "Oh, he was, he had such a great heart." And the next thing you know, they had pulled up chairs to the bedside. They began to talk about this fellow, tell stories about him, about how he had impacted their lives. After that they went to bathe his body in a way that refreshed everybody.

In hospice care, we continue to give fairly intensive care. It takes the form of intensive compassion as well, intensive attention to the needs of this individual, to see that their symptoms and pain are well managed, that their spiritual needs are addressed, that their family needs are considered, that they have an opportunity to finish whatever business is left unfinished for them--all facilitated by the interdisciplinary team. Oftentimes in hospice care you'll find nurses saying, "I am finally now doing the kind of nursing that I had always hoped I'd be able to do as a nurse."

One calm person in the room can make all the difference. Just as we might lend the strength of the body in helping someone to the commode, we can lend the stability of the mind. Once I was in a room with a family surrounding the bed of a dying patient. While they were well meaning and they were trying to cheer him up, it was a bit overwhelming. I had never met him before. I sat quietly in the corner of the room, watching the family interacting, and the professionals coming and going. Finally the man screamed, "Everybody out of the room!" We all got up to leave, but he pointed at me and said, "Not you." I sat back down. He said, "You were the only one in the room who was calm in the face of my fear. Everybody else got more frightened, so I got more frightened."

Not Knowing

Mindfulness is paying attention on purpose. Mindfulness is learning to listen precisely and intimately to our own experience and the world around us. Mindfulness is a willingness to listen beyond our skills and expertise, to be informed by what we don't know in the situation.

In Zen practice, there is a great teaching that says, "Not knowing is most intimate." When we don't know, we have to stay very close to the situation in order to be informed by it. It's like walking into a cave without a flashlight--you have to feel your way along the wall. To "not know" means to be willing to allow the situation itself to show us where we are going, to include dimensions of the encounter that at first we did not think were so valuable. When I come into a room driven only by my agenda, all I will see is that agenda. Individuals cannot be healed by such a narrow view.

Compassion

Compassion is entirely a mutually beneficial exchange. The only way in which I come to a place of compassion is by turning toward my own suffering. In doing that I am also caring for myself.

When I work in this way, the issues of burnout and exhaustion tend not to loom so large. When we cut ourselves off from others, we also cut ourselves off from the resource of their compassion. We get duller and flatter and more cold and our bodies get hard, and our hearts get hard.

The care of someone who is dying is nothing special. We've been doing this for each other for thousands of generations. We have started to forget the gifts that dying patients have to give us, what they can teach us about living fully. This isn't just Buddhist rhetoric. When we come to the end of our lives, we discover the meaning and value of that life. We see what is really important.

Hospital systems have within them one of the greatest teachers of all time--the teacher of death. Usually we turn away from it. Rilke has the great line: "Love and death are the two greatest gifts that are passed on to us, and usually they are passed on unopened."

What would it be like if we included death more, invited it into the facility more, sat down with it, had a cup of tea and really got to know it? One day we will celebrate death the way that we celebrate life. We will begin to see it as our wise uncle.

Joe Flower is a contributing editor for this journal. He can be reached at bbear@well.com

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