This is an AI-generated transcript from auto-generated subtitles for the video Chaplaincy Speaker Series: Accompanying Living, Accompanying Dying with Kirsten DeLeo. It likely contains inaccuracies, especially with speaker attribution if there are multiple speakers.

Accompanying Living, Accompanying Dying - Kirsten DeLeo

The following talk was given by Kirsten DeLeo at The Sati Center in Redwood City, CA on February 18, 2024. Please visit the website www.audiodharma.org for more information.

Accompanying Living, Accompanying Dying

Introduction

Vanessa: Good morning and welcome to this month's installment of the Buddhist chaplaincy speaker series here at the Sati Center. Today, I'm so delighted to welcome Kirsten DeLeo, who is joining us from Ireland. This is a real treat. Kirsten is a meditation teacher, an end-of-life caregiver, and a spiritual care trainer. Based on her experience supporting dying people, she wrote the award-winning book Present Through the End: A Caring Companion's Guide for Accompanying the Dying.

Kirsten helped to pioneer one of the first training programs in contemplative end-of-life care called Authentic Presence. She was a founding member of the Harvard Buddhist Ministry working group and currently supports the European Buddhist Union chaplaincy network. Kirsten trained in the Hakomi mindfulness-based somatic approach to psychotherapy and has been immersed in Tibetan Buddhist study for over 25 years, including a three-year retreat. Kirsten also lived many years in San Francisco and served at the Zen Hospice and Maitri¹.

Kirsten now lives in Ireland, where she teaches and serves as a Buddhist chaplain at the Dzogchen Beara² Buddhist Meditation Center's spiritual care center. This center is located on a beautiful spot overlooking the Atlantic Ocean and offers support to people who are severely ill or facing the end of their lives. So Kirsten, thank you so much for joining us this morning. I welcome you and will pass it over to you.

Kirsten DeLeo: Thank you. Thank you, Vanessa, and everybody at the Sati Center. Thank you for having me. This feels like coming home. I lived over 20 years in San Francisco; my heart is still there. It's good to see everyone. Yes, it's afternoon here; you're probably still having your morning coffee, and I have my afternoon tea.

I thought for this hour we could spend some time reflecting on the nature of spiritual care and end-of-life care, right at the threshold of life and death, and then also open up the space for your observations, stories, questions, insights, and your own learnings. Because I know we all carry something and have experiences with that topic. I would also like to share a little bit about the work here in Ireland. We have a spiritual care center which is an integral part of our Buddhist center, and it's only the second spiritual care center in Europe, so it's quite a pioneering thing.

A Practice of Love

With spiritual care at the threshold of life and death, it really takes our whole being to be present. It's not easy. At the same time, it's incredibly rewarding and beautiful. We really see the loss, the grief, the suffering, and the deepest pain possible. At the same time, we see the beauty of what it means to be human.

I started this work in Germany and then moved to San Francisco to work at the Zen Hospice at the time. We were volunteers sent to Laguna Honda Hospital. It used to be one of the largest nursing facilities in the US, with open wards. The hospice ward had 28 beds in one room, only divided by curtains. The men were right at the entrance, and the women were on the further side of the room in the back. The curtains around the bed didn't even go down all the way, but only halfway.

When I started there, I remember walking up the long hill from the Forest Hill station to the hospital and thinking, "Wow, I'm not sure if I can do this." Twenty-eight people from across San Francisco. I had just freshly arrived from Europe, so it was also a culture shock. But when I walked through the big swinging doors, what I really found—and it still stays with me to this day—was the amount of love. Because what happened was that there were 28 people dying in different phases of their dying, from all over the city: homeless people, middle class, all colors, and social backgrounds. It was beautiful to see the community they formed as human beings, with conflict of course, and the normalcy of it. The staff, particularly the CNAs, did a fantastic job just to be present, and they taught me the most about really being present.

What I've learned is that the practice of spiritual care—of caring for somebody with a spiritual awareness—is really a practice of love. It's a practice of profound love because when we meet the depth of suffering, sometimes there is nothing we can say or do. Words cannot reach it. Only just being quietly, silently present, and really sending our love to the person, knowing I cannot change the situation.

In one way, nothing had prepared me for this, though I had started hospice work and spiritual care work in Germany. But what I discovered is that spiritual care is, in essence, a practice of love, of resilience to suffering, and of being with our human brokenness. That's a really profound experience.

As a Buddhist, I find it very inspiring that the notion of being a spiritual friend³ and the idea of accompaniment—walking alongside somebody—is a deeply human experience. I struggle with the word "caregiving" or "offering care," and even sometimes with the word "service," because there is always the notion that I offer something. But what I've learned with this practice of love is that it is really about just being there for another fellow human being, witnessing how they make sense of their own journey and experience, and the beauty of having that as a shared experience. Meditation has helped me, and is still helping me, to learn to be present in this way.

Presence Over Fixing

Sometimes when being at the bedside—and "at the bedside" is a metaphor; it could be with a family member or in a meeting—when somebody gets a diagnosis, the whole journey comes with this deep wish for the relief of suffering. That is not always possible. As a spiritual care team, I've been in situations where it was really hard, where we didn't know how to address somebody's suffering. But then, to see that what we offer—our presence—is what is really healing.

I remember at the Zen Hospice in San Francisco, in the old Victorian house, I was with a Japanese lady who had never left her house for 15 years before she moved to hospice. She was really scared of the world and really closed in. And there she was, completely exposed, with people going in and out of her room. The interesting fact, however, was that she always had her door half ajar, never closed.

I just sat with her. She often didn't say anything, and I always politely asked if it was okay to sit with her. She said yes. I bowed, she bowed, and then I left. That was our whole interaction for some time. Then one time, she asked me to sit on her mattress. She took my hand and said, "Why do you do that, Kirsten? Why do you do this? Why is everybody so kind?" I could tell that had never been her experience her entire life—that people are just really kind. She said it really warmed her heart and allowed her to open up and let us be with her. It's through kindness.

Spiritual care as a practice is also a practice of leaning into our own mortality, our own impermanence. It's making friends with our own dying and death, coming to terms with our own losses and aging. There's one teaching from a Tibetan Buddhist Master I always try to practice as much as I can. He was about to leave on a long journey, and one of his students said, "Teacher, don't leave us, or at least give us your heart advice." His heart advice was three lines. He said, "I am impermanent, you are impermanent. I am impermanent, you are impermanent. I am impermanent, you are impermanent. Practice this."

I think that is our practice in end-of-life care. It's so easy when we go in—and I catch myself to this day—to think I'm bulletproof. The other person is dying, and I'm safe. But that's not true. To really allow death to touch us, to lean into it, to make friends with it as much as possible, can really help us to be present and also to relax and feel a bit more at ease.

Seeing the Person as a Buddha

Spiritual care is a very profound practice of recognizing the other person's wholeness, recognizing their deepest capacity to be well and to heal even in death. What I've seen over the years is that some people really grow inward. The outer world is shrinking, and they become more and more limited, but the inner world becomes incredibly rich—the dream world, the spirit world. Their spiritual awareness can grow tremendously. A hospice nurse friend of mine once said, "I sometimes think I'm doing spiritual archaeology."

The practice is seeing the person as a whole person, and for us as Buddhists, seeing the person as a Buddha. Seeing the person as perfect, as complete, as whole, like ourselves. "Just like me, this person is whole, has capacity to love, to understand, to be cherished, and has fears, concerns, and worries." This practice of seeing the person as a Buddha is really helpful because there can be an underlying tendency to want to fix the person, especially when we come in feeling fearful or vulnerable.

The first person I ever sat with was a young man my age. I started hospice work in Germany when I was in my mid-twenties. He had terminal cancer, was bald, fragile, and weak from the chemo. I sat with him, and I felt so helpless. We were surrounded by a very clinical environment with whitewashed walls, and I think I never felt so helpless in my life. All he wanted was to live and get the hell out of there, and I knew this wouldn't happen. And it didn't happen.

Not allowing fear to prevent me from being there, recognizing that there is fear but I'm not my fear, requires awareness. An awareness that we are in fact bigger, and that the person is more than their illness or diagnosis. It might sound simple, but in practice, it's quite hard, especially when something resonates. With that young man, I saw myself dying; I saw myself in the bed.

The self-awareness we train in meditation practice is very important to bring to spiritual care. As a spiritual caregiver, I wish I had all the answers for you. I wish I could take away your pain, but it's impossible.

There is a cliché, and it's actually really true, that the person we are with is our greatest teacher. I remember one gentleman back in the Zen Hospice. He was in his mid-sixties at the time, Charles was his name. He was African American, and I was this European, middle-class woman at his bedside. His whole body was emaciated by his disease; he was just skin and bones. I sat with him in the late afternoon, and I could feel a real tenderness, with tears welling up.

As a German, my cultural upbringing was that you don't show any emotions, so I tried to manage it. He had his eyes closed, so I felt safe. But then he opened his eyes and looked straight at me. It was almost as if I stood in a fierce fire, and I knew I couldn't pull back or hide. I learned in that moment I had to stay. I had to keep eye contact and not pull back with fear or any emotions. Just to stay. And I said to him, "Charles, I'm here." He squeezed my hand and said, "Good, good, good." Then he closed his eyes, pulled his hand to his chest, and held it there for the longest time.

The learning from the people we are with is that they tell us what they need, how to be with them, and how not to be with them. It's okay to be vulnerable, to show our humanness in that interaction. Not to come in as a helper or fixer. What I've also learned is that it's not the time to teach. I'm a meditation teacher, and there is a tendency to teach, but it's a time to show and offer loving-kindness. It's not a teaching moment unless somebody asks about my own practice.

The Room Within Ourselves

As a Tibetan Buddhist, it's very much about taking the long-term view of the person, not only seeing their suffering, but seeing their spiritual development across lifetimes. Understanding that the dying process itself and the moment of death are not only medical or biological processes, but a profound spiritual process and a sacred moment. The more we can create a sacred, calm, peaceful environment, the more helpful it will be.

I'm not talking about nice decor, images, or incense. I'm referring to the room we have made within ourselves, the space we have made within ourselves to welcome the person. The clearer I can be, the more empty of myself, not self-absorbed or self-conscious, the more I can really be with the person. In end-of-life care, the attention is on the person who is dying, and giving that attention is really a practice of love. One client of mine once said, "Kirsten, I knew that I was loved because of the way somebody in our team tied my shoes." That's a very moving example of how we do things, bringing spiritual awareness into meeting the other person.

That can also be through touch or silence. But silence is not always what people want or need. For some people, silence is scary, it's threatening, they feel abandoned. If I'm sitting there silently, they don't know what I'm doing and they wonder. The notion of spiritual care is offering silent spaces, which is beautiful and true, but sometimes we have to be in tune with the other person to see what is needed. Maybe the silence reminds the person of punishment because their mom punished them with the silent treatment.

I was with a really feisty lady who used to be homeless and was on the hospital ward. She was rebellious, angry, yelling at people, and she kicked out the chaplain. She didn't want a quiet, calm, stable, loving presence. She wanted somebody real, alive, right there with her who could spar and be funny. I remember sitting with her quietly, and she looked at me and asked, "Are you dead yet?" I laughed because, yeah, you don't want to have a corpse in your room. I realized she wanted to play. Some people need to feel alive, they want to play.

Sometimes spiritual care is watching a movie together. Sometimes it's doing very ordinary things. When I first came to the States, I didn't know about afternoon shows, but just sitting side by side watching an afternoon show while the person is having a smoke. During that time, the person will tell you about their life. It's safe, you're not looking at them, it's casual, and the person can relax. Maybe we have the experience when we sit in the car with somebody, and we have the most profound conversations because we are looking in the same direction and going in the same direction. There is something to that traveling together.

My own meditation practice helps me to stay present, compassionate, and sane. Sometimes people are interested, and I share practices from the Tibetan Book of Living and Dying, especially when they want to prepare themselves. My teacher used to say, "Don't allow them to die empty-handed." Give them something they can draw on, whatever source of inspiration it is. As Buddhists, we would call it Refuge, but something that gives them a sense of belonging, something they can hold onto when everything is falling apart. For some, it might be a religious or spiritual practice or a prayer. For others, it might be a poem or legacy work.

Legacy work is very important at the threshold. "What am I leaving behind? How do I want to be remembered?" I sat with a beautiful elderly lady here in our spiritual care center in Ireland. She had been home alone all through the pandemic. When the lockdown ended and we could welcome guests again, we were overrun by people who were so isolated. I sat with her, and she said, "You're the first person in a year I'm actually sitting with." She was crying and had just received a terminal diagnosis of cancer. She had grandkids, so she decided to write a letter to every single one to pass on what she had learned in her life.

Sometimes we can help people with legacy work, by recording them or helping them write letters. We can also be the receiver of their wisdom, to hear their voice and wisdom, and also to hear the things that didn't go so well. To bear witness brings tremendous healing. It doesn't mean I have to say or do something. Just to bear witness to the regrets people have is a form of asking for forgiveness. If somebody can listen and stay without recoiling, it helps bear that burden.

These are my thoughts about spiritual care and end-of-life care at the threshold. Looking at the time, I want to make sure to hear from you. Maybe you came today because something is happening in your own life, with a parent, friend, or family member, or you have observations or questions. I'd like to open it up.

Q&A

Jim: I'm curious how you deal with time management in a hospital setting when you don't usually have much time with each patient. Things like sitting with someone in silence or watching a TV show are not necessarily things you'd be able to do easily. How do you approach that when you have a set number of people to see in a day?

Kirsten: Honestly, I do it intuitively. The reality is that we have to see so many people in a day. I have the luxury in our spiritual care center to only have a maximum of seven people, but what I find helpful is realizing it's not the length of time; it's how I am present with the person. If I really offer my full presence with a spirit of loving-kindness or empathy, people feel that and they don't remember how long I was with them. They remember the feeling of being seen and understood, even if it was only two or five minutes.

Research on residents in training showed that when a doctor sat down next to the bedside, patients felt like the doctor spent more time with them than if they had stood, even if the actual time was the same. It's about the quality of the attention. Eye contact at eye level is also very important to bridge the power gap. Sometimes when I know I have to see many people, I'll say up front, "I have five or ten minutes, and I'm here." It's something simple but helpful, and if I promise to come back later, I make sure to come back.

Benette: I was caught by the language you used—that it's not about the beautiful room, but "the room I make of myself." I often feel rushed, with social workers or others coming into the room. I had a moment yesterday with a homeless person who was very agitated. We connected and walked together for a while. It was a beautiful meeting, and then a social worker came in and in a second it was over. Your language about creating a room within oneself and inviting another person to join is very helpful to me.

Kirsten: How beautiful that you both had that walking alongside together. Natural and sometimes abrupt endings happen, but maybe that was enough. The room I make within myself is a feeling of an inner space opening up, and relaxing into that bigger presence we are both held by. Sometimes, when I feel a person needs quiet time but I'm not sure if it's happening, I visualize a protective tent or dome around us to create a safe environment. You can even leave it around them when you leave, holding them.

Christy: My husband was recently diagnosed with ALS. He's beginning to talk about if and when he might want to take advantage of physician-assisted dying. Could you say something about how I could best accompany him in that process?

Kirsten: Can I ask you a question? When he asked that, how are you with that?

Christy: I'm comfortable with that if that's what he wants, because ALS is a horrible way to die. I'd rather accompany him in that process. We spoke with our minister, who suggested he speak with his children and clear out regrets and seek forgiveness.

Kirsten: Assuring him that you're together in this decision, with no struggle, is important. This letting go process is the deepest possible surrender. Sometimes, the wish for autonomy can be a tremendous burden. When people know what's ahead of them, the mind jumps to the worst possible scenario, and fear takes over. I would always check if the decision is based on fear, and how that fear can be alleviated medically, spiritually, or emotionally.

As a Buddhist, it is personally very hard because I believe life is precious to the last moment, but it's easy for me to say when I'm not the one locked in a body with pain. I've seen people really grow and shine at the end of their lives, and letting other people take care of you is a deep surrender. Just be clear every step of the way and offer your presence.

Barbara: I'm with a dear friend who is turning 90 soon. He has increasing dementia and physical issues. The roles have switched—he used to take care of me, and now I'm taking care of him. He has this recognition of the role switch and there's a sweetness to it, but he is also very afraid and in denial. How can I walk this path with him?

Kirsten: Grief doesn't begin with the moment of death; anticipatory grief starts long before. You are grieving the change of the relationship. Since you have a beautiful, close relationship with him, you can just let him know honestly how it is for you. Tell him, "This is really hard." Sharing your feelings might help him find his own words and connect to what's happening for him. Underneath the fear is a current of love. Grieve together and help him with his own fears by being genuine.

Randall: Could you talk more about spiritual care at the beginning of life, dealing with mother and infant loss?

Kirsten: Death happens not only at the end of life but also at the beginning. The story of Kisa Gotami⁴ comes to mind. She lost her baby and went to the Buddha, asking him to revive her child. He told her to find a mustard seed from a house that hadn't known death. She couldn't find a single family in her village untouched by death, realizing she was not alone in this experience.

I recently sat with a young woman who lost her baby unexpectedly in childbirth. They still don't know why. Just sitting with her, listening to her story, receiving it fully, and allowing her to come to terms with it is what's needed. She is also grieving the future that won't happen. Just bearing witness brings healing.

Reflections and Closing

Vanessa: Thank you, Kirsten. We're at time, but thank you so much for coming today and sharing with so much heart and warmth about your experiences, your thoughts about chaplaincy, and your practice of presence at the end of life. Very inspiring, and thank you to all who have joined.

For those interested, we very much appreciate any dāna⁵ donations that come in. Our next talk will be on March 16th with Nathan Jishin Michon, who will be talking about chaplaincy work in the context of crisis and disaster. Also, for anybody curious about the Sati Center's Buddhist chaplaincy training program, there will be an online information session on April 13th for both our online and in-person programs. Thank you so much, everybody, have a wonderful day.