Care of the
Dying
tricycle
Bringing a Buddhist view to the care of the dying
was the subject of five recent interviews conducted by Mary
Talbot, Executive Editor of Tricycle, and combined into the
following discussion.
Joan
Halifax, a medical
anthropologist and author, began her work with dying people in 1970
at the Miami School of Medicine. She is a senior teacher in Thich
Nhat Hanh's Order of Interbeing, founder of the Ojai Foundation,
Upaya, and The Project On Being With Dying, and a founding teacher
of the Zen Peacemaker Order.
Christine
Longaker, is a cofounder of the
Hospice of Santa Cruz County, the founder of Rigpa Fellowship in
the United States, and the author of Facing Death and
Finding Hope: A Guide to the Emotional and Spiritual Care of the
Dying (Doubleday, 1997). For twenty years she has taught
courses on the contemplative care of the dying.
Barbara
Rhodes is a registered nurse
and coabbott of the Kwan Um School of Zen in Cumberland, Rhode
Island. She works for Hospice Care of Rhode Island and has
ministered to the dying for more than twenty years.
Jeanne
Anselmo, a student of Thich
Nhat Hanh, is a holistic nurse in New York City. She has worked
with the dying since 1974.
Kathleen
O'Rourke studied with Maezumi
Roshi and works with The Project On Being With Dying in Santa Fe,
New Mexico.
TRICYCLE: Joan Halifax, how did you come to
work with the dying?
HALIFAX: My
grandmother from Savannah, Georgia, with whom I spent a lot of time
as a child, took care of many of her friends when they were dying.
After they died, she dressed them and saw the family through their
grief. It was part of the life of a Southern woman to do that.
Being with the dying is the work of village women everywhere.
The fact that my grandmother was comfort able with dying people
and dead bodies undoubtedly influenced why I grew up without much
fear of death.
TRICYCLE: And eventually you came to work with the dying in a
professional setting?
HALIFAX: Yes.
In 1970 I went to work at the University of Miami School of
Medicine as a medical anthropologist. Dying people were basically
ignored in hospital settings because they were a "lost cause." In
1972, I married [psychiatrist and LSD researcher] Stanislav
Grof, and we worked with people dying of cancer, using LSD as an
adjunct to psychotherapy. I was inspired to be with people who were
facing extreme situations. During the LSD sessions, I was usually
lying on the couch with the dying person, holding him or her. Often
I felt like a mother who was holding her suffering child or a child
holding a dying parent.
TRICYCLE: Jeanne Anselmo, is palliative care of the dying part of a
nurse's training?
ANSELMO: Not
in 1974, when I began working at Sloan-Kettering, and only now
are we beginning to try to change that. As a student, there were
times that I'd know one of my clients was dying, even if I was at
home. I just had a sense about connecting with people in some way,
talking to them—nobody had even mentioned that in the training. I
was learning about what it was like to be with a person who was
dying, that each death had a different energy and tempo and rhythm,
and that it had nothing to do with what the doctors talked about in
terms of prognosis. The people we were told would soon be released
from the hospital often went into their own dying process, and
died. And often ones who we were sure were going to go-they lived
very long and healthy lives.
TRICYCLE: Christine Longaker, your husband's death led you to the
hospice movement?
LONGAKER: Yes, twenty-one years ago my husband was diagnosed with acute
leukemia. It was really my first personal encounter with a death,
and I realized I didn't have a clue what death was. I didn't have
any spiritual belief at the time, or any images or concepts about
death. All I could draw on was what I had learned in our society,
which is that it is some thing very tragic and hopeless. And I
said to my husband, "If that's all that death is, then we're just
going to feel like victims of this illness and the rest of the time
that you live, our lives will just be a sad story playing itself
out." So we decided instead to view death as a gift in our lives.
This view of death helped us get through the suffering of that year
and find a deeper appreciation of life. By the time he died a year
later, when we said our goodbyes, we had a feeling of "Thank you.
I'm sorry for all the trouble that there's been, but at the same
time, thank you for being there, and for this year, and for what
we've learned together." And that allowed me to feel very peaceful
at his death.
A year later, I joined a group of people in northern
California who were starting a hospice program. Because of the
positive aspects of my husband's death, I had a strong wish to give
something back to others. I hoped I might help other people avoid
some of the unnecessary suffering my husband and I went through
during the year of his illness.
TRICYCLE: What can you offer to someone who is dying?
HALIFAX: Most
of what we are "doing" is listening. Usually, we're not doing
guided visualizations. We're not giving advice. We're not doing
psychotherapy. We're not administering medications. We are being
present. And that presence requires listening—to what is said, what
isn't said, even to silence. One person I worked with, a very
wonderful man, had just gotten discharged from the hospital and he
said, "Thirty, forty, fifty people come see me in a typical
hospital day, asking me questions. Not one person sat in silence
with me, and that's all I wanted. Just somebody to be with me."
That's our true work. It's not applying fancy meditative
technologies. It's practicing radical optimism. In this work, you
need to be fearless. And that's what we give: no fear.
TRICYCLE: Barbara Rhodes, is "no fear" a state you bring to your
work?
RHODES: I
just try to be myself, which is usually pretty fearless, and I
think that provides some comfort to people. I work with respecting
them and making a lot of eye contact and trying to remind them of
their qualities and strengths and really encourage them to find out
who they are before they go. I think that helps fear go away. Of
course, believing in themselves is work that they have to do on
their own. But I think seeing and paying attention to them helps
someone who's dying feel a little more solid. They often need less
[pain and anxiety] medication as a result.
TRICYCLE: Determining what someone needs must be a very subtle
process.
ANSELMO: Often I find that when people are dying, there's a way in which
we start to connect, there is an energy beyond conscious mind that
starts to unfold. That is what teaches us what we need to say or
pay attention to. There are so many ways to help to reassure a
person. I try to really pay attention to who that person is. As a
nurse, I maybe just sit, or just breathe with the person, or use
therapeutic touch. Or I may encourage friends and family to come
in. Basically, I'm trying to read what the person is saying on so
many subtle levels of their being, whether it's in the intonation
of their voice, their nuances, or their breathing pattern.
Sometimes that's all you need to hear.
TRICYCLE: Kathleen O'Rourke, when you were diagnosed with breast
cancer two years ago, did you imagine that you would be helping
other people to die?
O'ROURKE: Well, that diagnosis was my first real hit that I might die
soon. At the end of my treatment, a very close friend of mine got
sick with lymphoma. She did everything she could, all the
treatments that she could, and it just wasn't working. She became
bedridden and needed round-the-clock help. We needed a schedule for
her, and Joan [Halifax] helped us with that.
Since then, I have sat with others through Joan's
Partners Program, where we sit with someone who is dying. There's
something about what I've done and the experiences I've been though
that's very attractive to people who find themselves in the midst
of cancer or whatever it is.
TRICYCLE: Christine, you use the term "unconditional acceptance" of
the dying. What do you mean?
LONGAKER: I
remember years ago hearing Elisabeth Kubler-Ross say that the dying
need unconditional love. I really took that to heart and realized
that I hadn't experienced that toward my closest friends, let alone
myself. I imagine it is a state pretty close to enlightenment. So I
wondered, what could I give the dying—or the living for that
matter—that comes close to that? And what I came up with was
unconditional acceptance. We need to accept them exactly as they
are, understanding that they are human beings with suffering, with
habits, with a whole history we might not understand.
TRICYCLE: Can you separate physical from spiritual
care?
HALIFAX: Definitely not. Often people are not only physically neglected
but physically traumatized in the process of illness. To be touched
or held can be so beneficial, whether it's the therapeutic touch of
a nurse or the touch of the doctor on your hand, or of a relative
or a friend just holding you. Neglect often comes out of fear of
being in contact with a dying person.
TRICYCLE: Is it ever hard for you to be in the presence of that kind
of suffering?
HALIFAX: Being in the presence of suffering, we can experience alienation
and defensiveness, or dualism can dissolve and compassion arises.
If you feel alienated, then you know you are protecting yourself.
It's very common to objectify sick people, to classify them as a
"cancer patient" or as a "colostomy." We try to "deobjectify"
people, to realize the truth of non-differentiation between self
and other. If you are able to be fully with someone, you see that
the illness is yours. The work focuses on developing compassion and
equanimity, the two sides of the coin of non-dual awareness. We try
to exemplify the internal qualities that we hope will develop in
the dying person, where he or she can be present and sustaining in
the face of great physical and psychological
difficulties.
TRICYCLE: What does Buddhism have to offer non-Buddhists who are
dying?
RHODES: The
Four Noble Truths are grounded in the fact of suffering. People
might think that's negative, but it's only the truth. It's our
human condition. So Buddhism has us just look at it nakedly. Look
and ask yourself, "What is this? What am I?" That's the last thing
a lot of people want to do, especially when they are sick. They
want to be fluffed up somehow, diverted. But Buddhism doesn't allow
that, and hospice doesn't allow that.
HALIFAX: Death has been a very important teacher for Buddhists through
the centuries, and I think that's why Buddhism has so much to offer
to our understanding of death and dying today. It all starts with
the Four Noble Truths on suffering and freedom from suffering. Then
there are all the contemplative technologies, from meditation to
phowa. It's been said by many teachers that there are only two
kinds of meditations we need to practice, one is lovingkindness and
the other is the awareness of death. I think that is very good
advice. But most important, Buddhism's perspective on liberation at
the moment of death lies at the heart of our work. Death is the
most radical opportunity for enlightenment.
TRICYCLE: And the teachings on impermanence?
HALIFAX: I
remember one man with AIDS I worked with in Georgia. He came into a
retreat for dying people and caregivers. In the retreat, I talked
about impermanence and we did some practices focusing on
impermanence. In the final phase of his illness he said, "You know,
I'm so glad you told me about anitya [impermanence]” like it was a
woman. "Anitya really helped me. If I thought I had to live with
this pain into eternity, I would go mad. But knowing that this pain
is impermanent, I can be with it, finally."
TRICYCLE: Christine, coming from a Tibetan tradition, do you
automatically bring the teachings on the bardos and rebirth to bear
in a hospice setting?
LONGAKER: When I was doing caregiving work, I found the teachings on the
bardos heightened my awareness of, and understanding for, the deep
suffering the dying person was experiencing. I didn't speak to them
about my beliefs—it wouldn't be appropriate in that type of
setting.
But the Tibetan Buddhist teachings say that those
who care for the dying can give invaluable support if their
meditation practice has stabilized to the point where they rest
continually in their true nature of mind. My meditation practice is
not that advanced, so I rely on the "essential phowa" practice that
I learned from Sogyal Rinpoche. It can be used to heal the regrets
and the memories of our life. It's a practice for life and it's
also the main practice we rely on after someone has died, to help
free them of the suffering.
TRICYCLE: Joan, do you bring up Buddhist practices or ideas or terms
with people who have no familiarity with the
teachings?
HALIFAX: Only
when it's appropriate, though I do get asked about it by people who
know I am a Buddhist. Our Partners Program, for example, is made up
mostly of so-called non-Buddhists. They have learned that we are
not helping Buddhists to die, we are helping buddhas to die. That's
a major distinction. We work with Christians and Jews and
agnostics, so we have to translate Buddhism for a population which
is not Buddhist.
RHODES: I
don't. In eleven years, no one has ever asked me for a book or a
specific practice to do. Rhode Island is a very Catholic state, and
those who don't have some established religion are agnostic. My
teacher says, "An old man can't practice." And that's not about
putting down seniors. It's about an encrusted consciousness that
can't change. And I think when you are dying, you're even less
likely to make a shift. Some people think that dying is an
opportunity to open, but I haven't seen that. In my experience it's
more likely to push you into your habits and fearfulness
more.
TRICYCLE: But you challenge that encrustedness? You try to move the
person away from their habits?
RHODES: I'll
test the waters and say, "Would you like to sit with me quietly for
a while?" And some people like that. And sometimes I think maybe I
should try more.
TRICYCLE: Do you have specific techniques or practices you use in trying
to allay someone's fear, or to help them tap into their true
nature?
O'ROURKE: I
think it's a very individual thing. My Zen practice has taught me a
great deal, but a lot of what I do I learned in A.A., which I've
been in for fifteen years. I often ask people if there is a place
internally where they can feel comfortable. And most people say,
"Yes." And then I ask, "How can you access that? What are the
things you do?" And mostly, I think, it's a quietness, a conscious
touching of that place. I think the same thing happens with the
metta practice that Joan does, but without the
directions.
RHODES: After
I know a patient well enough, I take the risk of asking them about
certain things: What's the point? And what was most important about
your life? Or if there is something afterward, what do you think it
might be or what would you like it to be? I try to get them to
start thinking, and if it makes them really uncomfortable, I
stop.
I took a workshop with Patricia Shelton [guiding
teacher of the Clear Light Society] on the breath meditation
practice she does with the dying, where you say part of a prayer or
chant on the patient's exhale [see p. 64]. The first time I used it
was with a family—sort of your average Catholic family—whose father
was dying from cancer. I suggested we try this meditation, saying a
phrase of the Lord's Prayer on his exhale. Some of them kept going
out of the room because they couldn't handle the intimacy, which
was very intense. Just to be able to say, "Our Father..."—he was
breathing slightly —"...who art in heaven...." It was beautiful. We
did it for about forty-five minutes without stopping, and it was
like being at a Zen retreat.
The family really responded and relaxed and, you
know, there was no patient there, we were all dying. And after
having a really pained expression on his face, the man relaxed. He
died with a smile on his face. It was incredible.
TRICYCLE: Do you try to figure out if someone has a spiritual base and
tap into it?
RHODES: In my
experience, I often need to bring it up, I need to search that out
a little bit. I've had some very evolved patients who teach me as
much as I could possibly teach them, who are very open and honest
about their process. But still most of them, I think, are pretty
fearful. Even though they are open and honest and good
communicators, there's an edge where they feel tight and afraid,
and I think that's my experience: there aren't too many people who
are prepared to die, are prepared to relax and trust it, sit in the
corner and just not know and be with it, learn from it.
TRICYCLE: Christine?
LONGAKER: I
once worked with a woman with advanced cancer who noticed how at
ease I felt about death. She kept asking me, "What do you know? Why
are you so confident about facing dying and death with me?" She
told me, "l study with the Church of Religious Science, and we are
open to every religious tradition, and we give teachings from every
religious tradition and I want to hear what you are learning." So I
did share some of what I was learning. One of her greatest
sufferings, she told me, was that her whole life she felt a strong
devotion to Christ and prayed to Him and always relied on Him in
times of trouble. "Now that I'm dying;' she said, "I have so much
physical suffering and so many problems in my family. And when I
pray, I feel completely alone, I feel like Christ has abandoned me.
"So I taught her the essential phowa practice and encouraged her to
visualize and invoke the presence of Christ as she did it and to
open her heart to Him and to ask for His compassion and His love
and His purification. I came to see her the next week, and she
said, "Before, I felt alone and isolated and abandoned by Christ.
But since I've been doing this meditation, I feel like He's right
here in the room with me. Now I'm not afraid of dying."
TRICYCLE: It sort of jump-started her own practice?
LONGAKER: Yes, exactly. It connected her to her devotion, but gave her a
way to really bring that presence that she was longing for after
death into her experience, even in the process of dying.
Even if the dying person isn't open to such a
practice, I always practice quietly by their side when I am
visiting them, or when I go home at night, I imagine all the people
I have met that day and I do this practice for them again and
again, both when they are dying and when I've learned that they
have died.
TRICYCLE: What do you do if someone has no spiritual path at all and
is consumed with fear and anxiety?
LONGAKER: Fear and anxiety can come even for those on a spiritual path.
Wherever we can, we should relieve the dying person's fears, for
example, by giving him or her adequate pain medication. Fear often
comes from not feeling safe, not feeling accepted or loved, not
being connected genuinely to anyone or anything. Even for someone
with no spiritual beliefs, the bottom line, as the teachings say,
is to help the person not die empty-handed.
TRICYCLE: Not die empty-handed?
LONGAKER: Help them find a meaning in the life they have lived. To focus
on their accomplishments, on what they've learned, on what benefit
they got from their life, on what sacrifices they made. As a friend
of someone dying, you can describe to them how they have
contributed to you r life, or how even in their dying, you are
receiving something from them. These are all spiritual approaches,
supporting someone to prepare for death from their heart and mind.
There's always something you can do.
TRICYCLE: How do you work with someone who is likely to die very soon
and just doesn't want to admit it to himself or
herself?
HALIFAX: Our
job is not to challenge the defense of denial, but to be present
for it. Denial is an adaptation to a catastrophic situation. One
woman with whom we worked had breast cancer. She was a
scientifically minded woman who sought one intervention after
another. Just a few days before she died, a special serum was sent
from Japan by her father, who was a physician. Her husband called
me up in total desperation and said, “This is insane. Two years
we've been going through this, and she was just beginning to accept
her death and now it's another intervention and I just want to
scream. I've been taking care of her twenty-four hours a day and
I'm going crazy." And I said to him, "If she wants it, your only
job is to say 'Yes.' Her efforts to prolong her life are her
choice.''
TRICYCLE: When someone is dying, and their emotional state is one of
extreme fury or hatred, how do you handle that?
LONGAKER: If
it’s someone in my family, I'm likely going to take their anger
seriously at first. There's a practice that helps me a lot: I
imagine changing places with the angry person, having their
suffering and seeing the world with their history of pain and fear.
My compassion opens out, because I understand them, and see that
they are just like me. I remind myself that their emotions and
fears are only a temporary layer, like clouds moving across the
sky.
TRICYCLE: What are some of the institutional or societal hurdles to doing
this work?
RHODES: Sometimes the hardest thing in home care is just getting people
to turn the TV off.
HALIFAX: There's resistance in many hospital settings to pastoral or
spiritual care of dying people. Those who give spiritual care are
not seen as adding to the bottom line, or they're seen as doing
"light" work, whereas the "real work" is the medical stuff. Often
we are not given much support. What conventional healthcare
institutions often fail to realize is that spiritual care can
reduce fear, stress, medications, expensive interventions,
lawsuits, and the time doctors and nurses have to spend reassuring
people.
TRICYCLE: Along with the fear of death and illness, is there a fear of
caregivers and the care itself?
RHODES: Many
people think hospice is a death sentence. Doctors don't admit the
patients to the hospice program until the very end. And that's sad.
Most patients are trying chemotherapy and radiation as long as they
can. Hospice is not a death sentence. It doesn't have to be "this
means the treatments aren't working." But in many cases, they will
die, and if they don't come to us until five or six weeks before
they die, that's really not much time. It would be nicer to have
more time with them to get to know them better and to make them
more comfortable. We are very good with the medications, too, with
psychosocial support and symptom control. People feel better and
they are able to relax more.
ANSELMO: That
affects the caregivers, too. Often people go into this experience
of only being with dying, and being only with the grief and the
loss and the tragedies that are occurring. It's very difficult for
people to truly replenish. And we've systematized it that way. We
have extraordinarily gifted practitioners, but we also lose them,
because they dive in so deeply.
TRICYCLE: You've all talked about the difficulties of walking into
complex family dynamics around a death. What do caregivers need to
know about that?
HALIFAX: Don't take anything personally.
O'ROURKE: When I worked with Kathy, a woman with breast cancer, it became
pretty clear that her family didn't want me around. I was seen as a
"survivor." I picked up on it right before it happened, and I said,
"I don't think I need to be here." I was grateful it happened,
though, because I want to have my eyes open about this
work.
TRICYCLE: What else has being with dying people taught
you?
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