Hope at the End of Life

Judith 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.

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.