In her years working as a hospice chaplain, spiritual caregiver and author Kerry Egan has rarely found that dying patients want to discuss God or religion. Instead, chaplaincy work for her leans on the quality of the presence she can offer her patients and the compassion and empathy with which she can hold space for them and their stories. Her book, On Living, is all about her time spent with dying patients and the remarkable tales they tell about their lives and loves. To follow on from this, for a beautiful conversation about the work of active dying, read the transcript of Duncan Trussell’s conversation with his mother Deneen Fendig just days before she passed.
Most of a chaplain’s work in hospice—what we call spiritual care—happens in pockets of time weeks, months, and, in some unusual cases, even years before the patient dies. I can count on my hands and feet the number of hospice patients’ deaths I have actually witnessed. In fact, I’ve been present at more deaths as a chaplain at a hospital than in hospice.
Some people, often skeptics or those who have been hurt by religion in the past assume that chaplains are charlatans, or proselytizers intent on foisting our beliefs on vulnerable patients and grieving families. Maybe there are some chaplains like that, but I’ve never met one. Some chaplains are more skillful and empathic than others, but I’ve never met one I’ve considered an asshole.
But what we do is hard to describe. The essence of any meaningful spiritual care is, by its nature, nebulous and ineffable, and trying to describe it tends to make you sound silly.
“Hospice chaplains are sort of the opposite of storytellers. We’re story holders.”
It would have been easier to explain what I did that night at book club if I’d spent any part of the day with a patient or family who could communicate, and with whom I already had a relationship, and who wanted to talk. Because in that case, I could have explained that hospice chaplains are sort of the opposite of storytellers. We’re story holders.
We listen to the stories that people believe have shaped their lives. We listen to the stories people choose to tell, and the meaning they make of those stories.
While religion plays a central role in spiritual care for many patients, it doesn’t for many others. Spiritual care, faith, and religion are not the same thing. Some chaplains might also be priests and pastors, but in their roles as chaplains, they don’t preach or teach.
“Every one of us will go through things that destroy our inner compass and pull meaning out from under us. Never underestimate how frightening, angering, confusing, devastating it is to be in that place.”
Instead, they create a space—a sacred time and place—in which people can look at the lives they’ve led and try to figure out what it all means to them.
When you talk to hundreds of people who are dying and looking back over their lives, you come to realize something startling: Every single person out there has a crazy story. Every single person has some bizarre, life-shattering, pull-the-rug-out-from-under-you story in their past, or will experience one in their future. Every shopper in the grocery store, every telemarketer on the phone, every mother at school pickup, every banker striding down the sidewalk. Money, faith, popularity, beauty, power—nothing prevents it.
Every one of us will go through things that destroy our inner compass and pull meaning out from under us. Everyone who does not die young will go through some sort of spiritual crisis, where we have lost our sense of what is right and wrong, possible and impossible, real and not real. Never underestimate how frightening, angering, confusing, devastating it is to be in that place. Making meaning of what is meaningless is hard work.
This process of making or finding meaning at the end of life is what the chaplain facilitates. The chaplain doesn’t do the work. The patient does.
Soul-searching is painful. This process of making or finding meaning at the end of life is what the chaplain facilitates. The chaplain doesn’t do the work. The patient does. The chaplain isn’t wrestling with the events of a life that don’t match up with everything you were taught was true, but she won’t turn away in fear, either. She won’t try to give you pat answers to get you to stop talking about pain, or shut you down with platitudes that make her feel better but do nothing to resolve the confusion and yearning you feel. A chaplain is not the one laboring to make meaning, but she’s been with other people who have. She knows what tends to be helpful, and what doesn’t. She might ask questions you would never have considered, or that help you remember other times you survived something hard and other ways you made sense of what seemed senseless. She can reframe the story, and can offer a different interpretation to consider, accept, or reject. She can remind you of the larger story of your life, or the wisdom of your faith tradition. She can hold open a space of prayer or meditation or reflection when you don’t have the energy or strength to keep the walls from collapsing. She will not leave you. And maybe most important: She knows the work can be done. She knows you can do it and not crumble into dust.
From: On Living