Awake at the bedside – a conversation with Koshin Paley-Ellison

Categories: Education.

Could you tell me more about your work?

I am delighted and privileged to serve as the Co-Founder and Co-Executive Director of the New York Zen Center for Contemplative Care, an educational non-profit organisation, with my husband, Robert Chodo Campbell.

The Zen Center’s mission is about how to live an engaged life. We embody this quality of engagement through our study, direct care and Zen training programs. We are on the faculty of two medical schools, where our curriculum is now implemented in thirty-five medical residency programs, and we have trained over 1,100 physicians from across the world in contemplative approaches to care of the dying.

I began my training as a teenager in the 1980’s in the beginning of the HIV/AIDS epidemic, spending afternoons with dear family friends in the hospital after school. This is where I learned how just showing up is the most important.

Starting in my teens, I also began Zen meditation training, which taught me about how to stay with what is uncomfortable and to engage life with curiosity. My first Zen teacher, Roshi John Daido Loori, was a passionate practitioner and was dedicated to the integration of art expression and Zen practice.

Integration remains a key aspect of my work. In my twenties, I was working in magazines and teaching poetry to emotionally disturbed kids, and during this time, I became one of my Hungarian Jewish Grandma (Grandma Mimi)’s primary caregivers. Our relationship transformed me. 

What led you to work in palliative care? 

My time with my Grandma Mimi – from shopping trips, doctors visits, late night ambulance rides, and then moving with her into the hospice – I saw through her eyes and my own how afraid and distracted many healthcare providers are as well as family members.

The idea of the Zen Center came from my Grandma Mimi, who said: “I never thought I’d say this, but there is something special about the Zen thing and how you and your friends care. Start an organisation that brings Zen training and caregiving together. Teach people and change the way that care is given.” 

From my Grandma Mimi’s blessing, Chodo and I completed our chaplaincy training, I graduated from social work school, Chodo and I also engaged in years of analytic training, and continued our Zen training.

We felt strongly that in order to change the way we care for others we needed a multi-disciplinary approach and training. We both served on palliative care teams in Lenox Hill Hospital, and Mount Saini Beth Israel Medical Centers.

Palliative Care seemed like the natural engagement as our Zen training is also about the alleviation of suffering. 

Can you explain the concept of contemplative care?  

Contemplative care is the care provided by someone who is steeped in a daily contemplative practice in the tradition, with a community and a teacher, who sees the care they offer as the expression of this practice.

There is no ‘self-care’ there is only ‘care’ which is caring for oneself and others. So, contemplative care is the practice of generosity – giving and receiving as not two.

Contemplative care is based on the central three ethics: beginner’s mind, bearing witness and loving action. Cultivating a mind, moment by moment, of a fresh beginner’s mind without assumptions, bearing witness to the joys and sorrows of life, and from these two loving action flows. 

Is there a particular story you would like to share about a patient or family who you have met during your working life? 

Most of us live in unspoken fears. I was training a group of 70 doctors, with Chodo, and we asked them what they are afraid of. Pain, loss and change were the themes. So ordinary.

In my experience, people are afraid, and when I meet someone who does not want to talk about their feelings or speak frankly, I ask them what they want to talk about. 

I had the privilege to meet a middle aged man with metastatic cancer, who said: “I don’t do feelings.”

He told me about a baseball game, and how he was worried that his team was not going to make it to the World Series this year.

“They always go,” he said. So we talked about baseball, and how it was an anchor for him in his life, and how the fact that his winning team was not making it, broke his heart.

It made him sad. “What will happen to them?” he asked. 

“What do you imagine?” I said. 

“I don’t know,” he said, “I am just worried they will fall away into insignificance.” 

“What then?” I asked. 

“Well,” he said looking out of the window, “I guess we all have our time.”

“It sounds like that is really true for you,” I said. 

“Yep,” he replied, “it is really true for me too. I am disappointed and yet okay with it too. I go with my team.” 

We are always telling our whole story. To me, we can just learn to pay attention and receive fully where the person is without an agenda. Without needing to talk about something in a particular way.

Of course this is easy to say and takes a lifetime to practice. And this is the joy of practicing care and meditation. It is a lifetime of curiosity and investigation. 

What inspired the publication of your book? 

First, we can’t do this work alone. So the book is inspired by bringing together thought leaders into the community of a book.

Secondly, our students and colleagues have been asking me which book I recommend for them. While there are many wonderful books by colleagues, I wished to create a book with many voices to nourish and sustain caregivers, people accessing care and loved ones.

I was inspired by our Buddhist Contemplative Care Symposiums that we hold every other year which bring together thought leaders in the fields of palliative care, Hospice and Buddhist integration – including Dr Ira Byock, Dr Diane Meier, Dr BJ Miller, Frank Ostaseski, Marie Howe, and many others. You can learn more about this year’s symposium on our website. 

This is the first book to bring together the founders of the modern hospice and palliative care movements with Buddhist teachers and poets.

The book is about the intimacy and fierce compassion that is available in the moments everyone will face – when we become sick and move into our dying process.

In what ways do you see people around the world learning from and using the teachings contained in the book? 

We need each other. Each time I read the book, I am inspired. This book was created as a contemplative support, a companion, a friend for those taking care of those in distress and dying, as well as those in distress and facing their own dying.

This book is a guide to how we can be with ourselves – and those we care for – in the face of death. This can be such a vulnerable time in people’s lives and we will all face it.

This book is important as it brings together the leading voices of compassion to offer wise counsel and to share the struggle. It is designed to nourish and sustain you.

Is there anything you would like to tell me that I have not yet asked about? 

The aging population will increase by over 20% in the next years. Awake at the Bedside was created to address: how are we going to be prepared to care for those in distress and dying in our families, neighborhoods, hospitals and hospices. Only together will we make change in how we care for each other.

So, the book and our organisation are about doing the radical pivot – turning towards what we fear and being a source of compassion and wisdom in the places of great suffering.

We will all get older, get sick and die. The historical Buddha reminds us that our actions are our only true belongings.

So, we have the unique opportunity to engage through study, care and meditation. We have the opportunity to plunge fully into life. What will you do with your days? This is the great question to live with each day. 

You can purchase Awake at the Bedside online.

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This article was originally published on ehospice-International.