Frank Ostaseski is a tall, slim man with blue eyes that radiate calm. As director of the San Francisco Zen Center’s Hospice Program, he counsels the dying and their families, and teaches others to care for people with terminal illness.
His work has brought him into many diverse situations: he has cared for upper-class physicians dying of AIDS in secrecy, and for hundreds of children in refugee camps dying in anonymity; he has witnessed the loneliness of death in isolated residential hotel rooms, and the sterility of death in long-term institutions. Preparation for his work has included many years of Buddhist meditation practice, study with Elizabeth Kübler-Ross and Stephen Levine, and the experience of being a parent.
Ostaseski helped found the hospice program in 1987. Its fifty volunteers provide service primarily to indigent adults. Most of the patients have cancer; some have AIDS. All have a prognosis of six months or less to live. Frequently these clients are alone, with little or no support from family and friends; they are the people who have somehow slipped through the cracks of an inadequate and often capricious health-care system. Zen Center volunteers work with them in a variety of settings: institutions, homes, hotels. The program is in the process of converting a Victorian building into a hospice facility, scheduled to open within the next year.
I recently talked with Ostaseski about his work. We sat in the shade of the Zen Center’s courtyard, near a stone fountain, and drank orange tea. Bees floated over the pink and purple flowers nearby. It was the perfect setting for a discussion of working with the dying and entering more fully into one’s own life in the process.
THE SUN: The Zen Center’s program seems unique in that all the volunteers have some sort of spiritual practice in their lives, ranging from Buddhism to Christianity. When did you begin to make the connection between spiritual principles and physical care giving?
OSTASESKI: I spent about a year in Central America working in refugee camps. I remember once holding three or four little infants. My son Buddy was about a year old then, and these children were maybe two. They weighed probably thirteen pounds. Their bodies were shaking from starvation; they were panicky from starvation. If you fed them, the food would literally just go through their systems and come right out. So I began just to stroke them on their throats and chests, to provide nurturance and safety and security. That kind of nourishment had to be offered before the other kind could help. For me it was a wonderful lesson in, literally, how to care — how to know what comes first.
THE SUN: Spiritual nurturance is something a Zen Center volunteer might provide, which someone else might not be as well-equipped to give.
OSTASESKI: Perhaps we are different in that we recognize that the work we do with clients is also work on ourselves. We try to curtail “helper’s disease” as best we can. It seems to be rampant in our society: there’s a problem out there, I must do something about it, I have to go help. We’re not necessarily motivated by the best intentions. Sometimes we act out of our fear or guilt instead of a real desire to serve.
In our support groups for the volunteers and in our training, we continually try to remind each other what our intention is in coming here in the first place. If I have a picture of myself coming in to help this poor cancer patient, then who is the person lying in bed when I walk in the door? There someone is, with cancer, unable to care for himself, and I’m Mr. Do-Gooder; it makes him an object. There’s no service when that happens. Instead, if I can come in and be clear that this is work on myself, that this is a way for me to really pay attention and stay present with myself — then I can see the person for who he is, not for his symbolic value. I think this is particularly important with AIDS patients. The care givers often have a difficult time seeing the person behind the disease. So our program emphasizes not seeing each other as such separate entities; understanding that service happens when there isn’t so much I and other. It’s a perspective that comes from practice.
THE SUN: Could you talk more about how meditation provides that perspective?
OSTASESKI: One of the main teachings of Buddhism is impermanence, that everything is changing. We can approach the dying process with a bit more spaciousness, without panic, because in our meditation practice we see how from moment to moment we’re always dying; things are always changing for us and we can’t hang on to them. To hang on is extremely painful. So we bring that perspective to our care for the dying, as a way of keeping ourselves balanced. The grief still arises. I still cry about Stella, a patient I got very close to. I still have an enormous amount of pain because I love her and miss her; yet there’s another part of me that says, I understand. I can step back from that and say, yes, there is sadness; this person I loved is gone.
THE SUN: I’m wondering what it might be like on the other end, for people facing their own death with a lot of fear and resistance and denial. How does one work with people who don’t themselves have a spiritual perspective?
OSTASESKI: Someone once said that the work is not so much to be a Buddhist as to be a Buddha. It isn’t taking some idea and forcing it on patients, or even necessarily talking to them about it. But practice is about how I can be with whatever arises, how I can meet it very directly, how present I can be for it. If a patient is experiencing an enormous amount of grief or depression or anger, how can I be there and be responsive to that in an open way, without trying to make it different, without trying to fix it in some sense? So I don’t tell the patients, “Oh, you only need to see this as impermanence”; rather, I allow myself to be open enough to meet them right where they are.
For example, I was with Stella, who was living with us here. She had the impression that when she got here things would be much more comfortable for her, and indeed they were better. We tried to set up an atmosphere of kindness around her, so that if there was something she wanted to talk about we were there for her; if there wasn’t, we’d talk about whatever else was going on. At one point she started to finish up her business, so to speak: resolving some things with her family, asking them to leave, deciding not to take a lot more food, giving away her possessions. She really expected that once these external things were completed, she could just roll over and die. It didn’t happen that way. There was still her own letting go to deal with; her own body had to break down. The body takes its own time. She was angry and it became very painful for her, because she really wanted to get out. She started making letting go into something she somehow had to perform. She would continually ask, “How do I do this? How do I let go?” I’d try to gently draw her attention to a place in her body where she was feeling some calmness, some softness, and I’d say, “See that? That’s what it is. That is the letting-go place.”
Of course, it’s very unusual to be able to take up practice late in life, especially on your deathbed; it can lead to tremendous frustration if you don’t have those years of preparation. Stella didn’t have a meditation practice, and it was very difficult for her. She kept wanting me to give her enough morphine to put her over the edge. She cut herself off from care givers and became very uncommunicative. So our work was to continue to meet her with as much lovingkindness as we had met her with before, when she was being very sweet. We had to make room for what she was going through. I stopped talking to her about how to let go. I didn’t use any more techniques; none of those things seemed very useful. We just sat quietly together, without much talk. I’d hold her hand a lot. Sometimes her breathing would get fast and she’d get scared, and I’d put my hand on her chest and just rub it very gently and breathe with her; or I’d just talk to her.
One day she got this light in her face and turned to me and said, “What do I do first — love, or let go?” I responded by saying, “What do you think?” I didn’t want to give her more dogma to confuse her. She said, “Well, I’m not sure. That’s why I asked you.” I said, “Which one do you think you know better?” She answered, “Love.” “Good,” I said. “It’s the same thing. Just keep paying attention to the love you feel right now.” We’d talk about how she was experiencing love at that moment, what she was remembering about love. As she talked about it, she would say, “Oh, my back feels better,” or “Ah, my neck finally relaxed.” Those were signals that there was some big letting go beginning to happen. Over a period of days, things started to change in other ways: she could let herself sleep more; she didn’t need to be turned so much.
That was a real turning point for her. It didn’t come about because we gave her any Buddhist texts to read, but because we were just there with her very steadily, and tried to meet whatever came with some equanimity. She used to wake up in confusion and say, “I’m going uphill! Is that all right?” A few days later, she’d say, “I’m going downhill. Is that all right?” She had images of riding on cable cars and many other kinds of experiences. We tried not to latch on to them too much by saying, “Oh, this is a meaningful experience”; we just said, “Yeah, I understand. It’s more coming and going of the mind.”
So meditation practice is, first, a way of keeping ourselves balanced in the midst of this. Second, it’s a way of not getting so identified with the content of what’s going on — either in a patient’s mind or in our own. Third, it’s useful in cultivating some equanimity for each situation. There are a lot of different dramas and stressful situations that come up when someone is dying, and what seems to be most useful is a calm presence.
Finally, you understand that he’s frightened at that particular moment, really frightened. He doesn’t want to talk about it and he doesn’t want to process it in some way; he just wants to be numb. . . . What business do I have to try to get him to pay attention to his death?
THE SUN: It’s a constant and difficult struggle, to maintain that calm presence. The desire to do something — to try to change the situation — is always so strong.
OSTASESKI: Let’s say you go into a patient’s room and he’s watching television. You say, “How are you doing today?” “Hm,” he answers. And you say, “Gee, how’d it go with your mom? Did you talk to her?” “No.” So you say, “Oh, you’re almost out of water. Would you like some more water?” “No.” And it goes on like this. You say, “You want to talk?” “No.” After a while you begin to wonder, what the hell did I come in here for? Here I am a volunteer, I’ve driven an hour to get to the hospital, I thought I was going to take care of this dying person, and he doesn’t even want to talk to me. You think, this is ridiculous, I’ll just get up and go. So you say, “Look, I’m going to come back another day when you’re feeling more talkative.” And he says, “No.” Finally you understand that he’s frightened at that particular moment, really frightened. He doesn’t want to talk about it and he doesn’t want to process it in some way; he just wants to be numb; he wants to watch Wheel of Fortune as a way of momentarily distracting himself. What business do I have to try to get him to pay attention to his death? My usefulness right then is to serve, to meet him where he is. If he’s distracted, great, I’ll be there with him. I’ll provide the open space if he wants to talk. And if he doesn’t, that’s OK too.
My goal is not to do something. I’m not trying to get patients to deal with their emotions, with the big questions of their death. I trust the process to take care of that. I’ve never had a situation in which I couldn’t trust the dying process. It’s very potent; it does its own work, just like the birth process does.
THE SUN: A friend’s mother died of cancer last year. When we went to visit her in the hospital, she insisted that she was going to recover. She was making plans. She didn’t want to hear that she was going to die soon. Her son, my friend, was trying to deal with all the preparations, getting her to sign papers, trying to talk with her about what was happening, and she simply couldn’t face it.
OSTASESKI: Denial can take lots of different forms, but it’s a very useful process. When someone is in denial, that’s where that person’s dignity is. If I take away someone’s denial, I might take away that person’s dignity. Denial simply means, “I’m not there yet, I’m here. I’m not ready to die yet. There’s a lot more I have to face before I can face that.” It’s actually a very healthy state; sometimes it’s a state of enormous hope. In studies of cancer patients, it’s been ascertained that people who have a very strong, assertive way of dealing with their cancer treatments sometimes have better results.
Sometimes, when a dying person is experiencing a lot of depression, it’s not the best time to open up childhood traumas. There isn’t always enough time to deal with those memories, and all you end up doing is generating an enormous amount of pain right before the person dies.
THE SUN: A couple of volunteers visited my friend’s mother in the hospital. They were these cheerful women wearing blue uniforms and teddy bear pins, and they assured her that they’d seen miracles happen there. It seemed to me so wrongheaded. Here they were trying to offer a kind of false comfort instead of helping her to recognize what was happening. That’s so symptomatic of the way our culture deals — or doesn’t deal — with death and dying.
OSTASESKI: But there could also be a lot of damage done by someone who goes in to help someone die consciously — or else. Sometimes, when a dying person is experiencing a lot of depression, it’s not the best time to open up childhood traumas. There isn’t always enough time to deal with those memories, and all you end up doing is generating an enormous amount of pain right before the person dies.
There’s an old Buddhist story about two boats passing in the night. The man in one boat sees the other boat coming in the fog and the dark, and he begins to curse and swear at the person in the other boat, telling him to get out of the way. He’s swinging with his oar, yelling and screaming, getting very angry. When the other boat emerges out of the fog, the man sees that there’s no one in it. So he very gently takes his oar and pushes the other boat away. At that point, there’s no place to direct his anger anymore: it’s an empty boat.
In meditation you pay attention to the breath. Then you watch, moment to moment, what else is arising. It’s the same process in caring for someone who’s dying. I move from one moment to the next new moment, without an idea of where the process is going. If I get caught up in thinking that I know where it’s supposed to go, I’m in trouble, and I’m not of very much use to the patient. I don’t know where it will go. That’s part of what’s exciting to me. I’m fascinated with the death process. I’m always interested to see where the mystery will take me.
For further information on Frank Ostaseski’s work, you may write to him at the San Francisco Zen Center, 300 Page Street, San Francisco, CA 94102, or call (415) 863-2910.