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Waiting Room NapPhoto by John Starnes/Flickr, CC BY-NC-SA 2.0

On my first day as a chaplain at Calvary Hospital, a palliative care facility in the Bronx — a place where every patient was near death — I was overwhelmed. In the other hospitals I had worked in, I had sat by the bedsides of patients who were frightened, lost, conflicted, and alone — whose lives were rife with hardship, and who often had few resources to help them make their way. But there had been — almost always — a future to reference: the possibility that addictions could be overcome, that illness might recede or be cured, that physical pain might be relieved, and certainly that a time would come — in a few days or weeks — when the patient would go home and resume his life. Almost always, hope was an assumption for me and for the patient. No matter how much suffering, hope was implicit in the fact of being alive.

I was confounded on that first day of working about what hope could be for a person who was terminally ill and who would never leave the hospital. How might I, as a chaplain, offer hope? It was not enough to say that hope for a terminally ill person would be found in the belief that there would be a heavenly reward (what happened if you didn’t have that belief?). Or that hope could be the possibility of a comfortable dying process: just the right drugs delivered by caring attendants. I needed to know what hope is when someone is dying. I needed to grapple with this question so that my work with patients could be authentic, rather than formulaic; so that my work could be based on what I was really seeing and experiencing, rather than on what was meant to mollify my objections to what life can bring or to pacify my fears. These questions wove their way through my life at the hospital over the following months.

The physical pain that our patients experienced was terrible. The suffering of their loneliness might even have been worse, as they found themselves drifting in a grey space where they struggled to locate their selves, their lives. Even many of those patients who had religious narratives to bring them comfort and orient them, and whose pain medication regimens seemed to be effective, were often steeped in the murky waters of hopelessness. I had the sense that it wasn’t just about dying, or about pain, but about what this period of their life was like — a kind of non-life for many. Not only had they been taken away from their daily routines, their skills, their pleasures, but it was as if they were also dehumanized, no longer able to feel part of the world, no longer able to contribute.

The understanding of what hope could mean at the end of life — of how I might bring hope to the death bed — developed over time as I intimately accompanied patients in their last days and weeks. I began to see that hope is the experience of not being set aside, like a decommissioned train engine sitting on rusty tracks at the far end of the train yard. It’s the experience that no matter what the circumstance we continue to belong to something greater than ourselves — to god, to the family of creation, to the textured tapestry of existence. And belonging gives us meaning in the sense that we are part of that which makes up the fabric of life. Our very substance is woven into it, a thread among many. The opposite of hope, then, is not hopelessness, in the usual sense of despair, but meaninglessness, adriftness, disconnectedness, bereft of the deep companionship of something greater than ourselves.

Perhaps because some of my training was in the study of parents and their children from birth to age three, I sometimes find myself referring to what I learned then — when I looked so closely at newborn babies and their families — as I try to understand what is essential in order for humans to feel worthy and welcome. When an infant does not have a mother who is able to mirror him; when she can’t claim him and include him and help him to belong to her and to the world, then that baby often becomes a person who struggles with life-long depression. This need for mirroring and belonging, I think, is not a stage-specific task, but one that we meet throughout our lives when we continue to find other ways of supporting our need to be received and affirmed. At the end of life, many of those means are taken from us. No longer can we manifest our beings by a career or caring for others, by creative acts or intellectual work, by shaping the world.

I learned over the months that to evoke a place where hope might arise, I had to give up any idea of service and to offer instead my willingness to be deeply, authentically present, much the way that a mother does with her infant. I learned that when we stay with a dying person, and we mirror them, not just with words, but with our beings, they experience their essence more vividly. When we sit with them in their darkness, because it’s our darkness too, the darkness experienced by all people, they feel in their hearts that they are not alone, not bereft. When, through our careful probing and our deep listening, we support them in giving voice to whatever it is that is within them, they, too, hear how important their words, their thoughts, their experiences, and their feelings are; how essential it is for all of us that they speak their truth. By our presence, we offer the reality that they are not abandoned, no matter how dire their situation is. They continue to be in the stream of life and to be part of the human story. The tapestry of all living beings still needs that they play their part, so that we can experience the wholeness of that something which is greater than ourselves. And maybe that’s what hope is, something as elemental, as rooted in the body of the spirit as that.


Judith LeipzigJudith Leipzig is in the final stage of training to be a health care chaplain at Calvary Hospital in the Bronx. She’s also a member of the graduate faculty of Bank Street College of Education in New York City.


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28 Comments

Very thought-provoking...

Deeply thoughtful and beautifully written essay. Thank you.

I liked this essay a lot.  Thank you for sharing...

Deep authentic presence is exactly the concept that speaks to me, having lost loved ones to cancer and dementia. At the end they were disconnected from a sense of time in which "future" was even meaningful. They lived in the present, and the way to reach them was with loving presence and attention. Thank you for your perspective.

What a blessing to be with people at such a sacred time in their lives, thanks for sharing your experience and insight!

A beautiful article. Thought provoking. The need for acceptance, belonging and finding meaning in life are indeed at the crux of this transition.

Thank you for a thought-provoking essay on a subject we all avoid thinking about. I'll go call my mother in the nursing home now with a better idea of how to listen.

I needed this at this time as I was up late (or early 2:30am) with my Mother and her caregiver.  I was trying to be "present" via cell phone as I live 2000 miles from my Mom and make trips every few months to be with her.  She was hallucinating and frightened.  I sat in silence while she talked about her fear.  All she wanted from me was to feel valued and not forgotten.  She made me promise that as the demetia set in, to not cast her aside but to understand that she still needs and wants her family...even if we think she can't express it or at moments has confusion.  Thank you...

My brother spent the last few weeks of his life at Calavry as did my father's mother, many years prior. I lived there with my brother during those poignant last days. The caregivers at Calvery were very kind and compassionate and did all they could to provide comfort and to relieve smy brother's suffering. Our family is grateful.

One of the most beautifully written essays I have seen on empathy in caregiving. Distills many ot the themes explored in one of my favorite books on the subject--"How Can I Help?" by Ram Dass

Beautifully said, Ms. Leipzig.

My experience with death, dying and illness has shown me that, as the author so eloquently states, it is presence that matters– Not only to those who are ill or dying, but to those who are suffering beside them. Having been ill for many years myself, and faced my own nearness to death a number of times, I can also attest to this from the other side. No words have been so valuable as the presence of those who have simply offered to be with me. When we can sit with the pain of others, we acknowledge them on a soul-level, and affirm the hope that is in humanity.

At a time when my life hung in the balance, my mother was deeply comforted and filled with hope by the contact and presence of another woman with whom she did not share a language. No verbal communication was possible, but it was also not necessary.

Thank you for taking the time to share your reflections with the rest of us. Having been at the bedside of dear ones in my personal life in the days leading up to and for the moment of their death, and also as a current social work graduate student, I appreciate your thoughts and find such resonance. Thank you, thank you...

As I sat with my mother, a month or so ago, thinking this would be my last night with her,
I held her hand in mine. No words were spoken. She knew I was there for/ with her.
The pain of losing her was inexplicable and hurt to the core of my soul but in the stillness
of this sacred time together there was a sense of comfort, that I could be with her
during this very diffucult and intimate time.
Judy, thank you for so eloquently writing this essay.

We should all be so fortunate to have a chaplain like you at the end of life...You are a gifted writer.  Your words clarify and inspire.

A beautiful and sensitive article with information we can all benefit from.

Thank you for sharing... I'm grateful that you have found your work; that you are on the path that brings you to this place of sharing.

Very moving....It spoke to my soul..went through all ego barriers...and confronted the mystery of life

How beautifully touching. 

Great piece of writing.  Thanks for this.  You sound like a Metta trained practitioner!

Great blog post on reflections of a palliative care chaplain.

As one who has officially died twice (25 years ago in a car wreck and 2 years ago with a cardiac arrest), my experience of death is like turning off the TV. It is a non-experience. The "superego" often dressed up as the Church spends our lifetime convincing us death is something to fear. Therefore, much of the counseling preceding death is dealing more with the fears of those surrounding the dying. I am convinced from my own experience that prior to dying there is a dissolving of the ego, a stepping outside of this thing we call life or as Meister Eckhart called it, a detachment. We are just another weed in the garden that marks a season.

"So long as you haven't experienced this: to die and so to grow/ you are only a troubled guest/ on the dark earth."~Goethe

Being "just another weed in the garden" becomes a beautiful place to be. It is an understanding, of sorts.

Thank you Judith for your simple but profound insight. The greatest gift we can give to others is the sense that they belong and it begins when we realize that they belong to us.

Thank you, Judith.  As a person in Hospice, yet still active in the outside world, including participating in a new project, "By Your Side" that allows volunteers to be present to the underfriended and underfamilied at end of life, your words spoke exactly to how I experience those at whose side I sit, and to how I experience the gift of friends and family who touch me by their presence.

For four years I was a hospice health aide and had the privilege of physically caring for the dying.  Often I had to leave them soon after giving a bath, etc. and there wasn't much time to dwell on their thoughts with meaningful conversation.  Now I am retired and am looking forward to being a hospice volunteer where I am allowed more time to be in their presence.  Thank you for your insight words of wisdom.

Your statement that the opposite of hope is meaninglessness rings profoundly true for me. That the antidote for meaninglessness is authentic presence has been borne out in recent experiences I've had with dying loved ones. When they came to terms with the fact that they were dying, each had an authentic presence that made being with them a moving experience. The fact that they asked nothing of me but to listen, to be there with them, touched me deeply. Their passing has left a void in my life that I struggle to fill, but I would not trade my experiences with them for anything.

I was profoundly touched by your article, especially your belief that for hope to arise you've had to give up serving those who are dying and simply be authentically present. Many years ago, I wrote a booklet for The National Cancer Institute, for patients with far-advanced cancer. Hope was the most perplexing subject I had to deal with. You seem to have surmounted that mystery.

I attended the bedside of my grandmother as she died... For three days I stayed, living out of a duffel bag. Although she'd been admitted with a relatively minor ailment, it soon became clear that she had no intention of leaving while she drew breath-- She had outlived her husband, most of her friends, her son, and her daughter... my mother.

Although I wasn't really sure what to do, it soon became apparent that simply being there for her, doing small things-- Listening to her, touching her, feeding her ice chips, and running interference with the staff was plenty. It was her universe, and for that short time, it became mine. I realized that I had never felt so strongly that I was in exactly the right place, at the right time, doing the right thing. It was ultimately a blessing for both of us.

Very worth my time to read exspecially while I am in asscoicaltion with those who are in the final days of life.