Accompanying the Dying: A Hospice Chaplain’s Perspective

John Hughes

I have been a hospice chaplain for five years. After trying my hand as an advertising salesman, furniture salesman, priest in a church, food delivery truck driver, insurance benefits consultant, movie theater usher, and stock broker, I have now landed in my true calling. I accompany people as they finish dying. I accompany their loved ones as they say goodbye, and then grieve (or rejoice over) their loss. These activities are about 20 percent of my job, the rest being bureaucratic paperwork, driving to and fro, and attending meetings, but it is the 20 percent that counts to me. I stand at death’s door, greet a large parade of individuals as they walk up to it, and together we put our hand on the doorknob, and they then walk through. I haven’t joined them on the other side yet but I get quite a perspective on my own future.

Why on earth would I do such a thing? Why work at such a job when the advertising sales work was enjoyable and paid better? When I tell people what I do for a living, they often wince, ask if I get depressed, and pat me on the back as if what I do is extraordinary. “You are around death all day? Do you see dead bodies?” Yes, I am around death all day, and see dead bodies, and it sometimes feels like death is a rising tide of sewage threatening to engulf me, because of the medical suffering I am witness to. However, my work, and that of my colleagues, is badly needed, and the existence of the hospice industry is a sign of an evolving society.

I stand at death’s door, greet a large parade of individuals as they walk up to it, and together we put our hand on the doorknob, and they then walk through

I was predisposed to having this career because my mother died when I was six years old and it hit me hard, made me think about death, and life, and spirituality, to an abnormal degree as a young person. My father told me that he thought the medical establishment in America in 1963 treated my mother with indignity and neglect.  The fact that she was dying wasn’t even mentioned, until she spoke about it in the final week of her life. “I’m going to miss a lot of fun,” she said, at age 36, leaving behind her husband and three children. My father responded to his grief by very quickly remarrying, and as Beatlemania swept America, all discussion of my late mother was swept under the rug. Her existence became a taboo subject in our household, mention of her being shushed and frowned upon, even though we were all under the shadow of her passing.

I was pained terribly for many years by my loss, by the fact that that sweet woman had been neglected by doctors and nurses as she pondered her loss of life, and by the fact that she was now airbrushed from my history. My birth certificate was actually changed, legally, to say that my stepmother was my biological one, which I considered outrageous. Her absence was a daily unwanted presence for me.

Unable to speak about my loss openly, I studied it indirectly. I read books such as Ernest Becker’s The Denial of Death and Elie Wiesel’s Night. I pondered America’s Civil War with a heart deeply burdened by the death counts, and I was almost driven mad by current news reports about new death counts, coming from the United States’ involvement in the war in Vietnam. I gravitated towards friends and colleagues who also had lost loved ones, and spent many nights musing by myself in the dark about the meaning of life and death. It felt like a black cloak over much of what I saw and heard.

My mother, while she was alive, once when I was four years old told the woman who would become my stepmother, that I was a “very philosophical child.” I have no idea what behaviors or predisposition of mine made her say this, but after her death, because of it, I became, indeed, philosophical, driven by the centrality of death in my own experience.

However, I was not finished with seemingly unbearable grief. In 1993, Kerri, my beloved wife of 12 years, told me on a Sunday that she felt “weird,” and was dead on that Thursday, killed quite unexpectedly at age 36, by a heart virus. She was the same age my mother was at her 1963 death, and my daughter lost her mother at age six, the same age I was when I suffered the same blow.

I loved the feeling I got from hospice workers, doing such important work… They provided the exact service which I wished I had received myself, twice, during both of my losses

When I worked as a priest in an Episcopal Church during the 1990s, I noted small teams of hospice workers visiting the homes of my dying church members. I loved the feeling I got from these earnest people, doing such important work. They seemed to operate on a high-wire without a net, because they were having encounters that they had to get right, with stakes of life and death, and would not get a second chance after the patients were dead. Yet, despite these daunting realities, the workers were undaunted, almost cheerful, as they visited the dying. They provided the exact service which I wished I had received myself, twice, during both of my losses (the religious leader I served under never mentioned my wife’s death to me, never said a word about my tragedy). I made a note that that might someday be exactly the career for me, exactly the sort of person I wanted to become.

I worked my way indirectly towards the career from those days forward, arriving at 2010.

Meanwhile, the hospice movement in America was gathering energy.  Just as the environmentalist, civil rights, anti-war, and feminist movements had their foundational growth spurts in the 1960s as part of an all-encompassing “green” movement, so did the hospice movement, although it wasn’t until 1974 that the first official hospice was founded in America (there was one preceding it, in London, England). There was a new awareness taking root, in favor of humanizing the death process, seeing patients as people, not numbers, seeing death as a natural process, not an affront to medical expertise.  This rooted awareness found expression as hospice, as a parallel to the natural child-birth movement.

Guided by the notion of “holistic” medicine, the hospice movement involves nurses, aides, social workers, counselors, and chaplains, in addition to physicians, who serve the needs of patients and their families, attempting to address “the whole person.” We take the attitude of learning from the patients, asking what they need, hoping to be guided into greater expertise of care by the people we are serving. The growth has been exponential: in 1984 there were 31 hospices, and in 2007 there were 4,500 state licensed and federally regulated hospices.

I am a distinctive hospice chaplain because I am integrally informed… Integral theory gives me a clear understanding of what is happening before my eyes on deathbeds

The essence of hospice is that it is “palliative, not curative” care. After two physicians have agreed that a person has less than six months to live, no matter what curative measures are taken such as surgery, radiation therapy, etc., that person is deemed appropriate for hospice. When they consent to enter hospice, which is paid for by the Medicare and Medicaid programs, they may reserve the right to change their mind, and leave it, returning to a curative approach to their disease. If they stay, they may receive hospice care in their own home, or in the nursing facility where they reside, or come to a hospice inpatient unit. We hospice workers greet them with open arms and commence the journey towards death with them, in all that that entails.

John Hughes. Crossing Rivers: Journal of an Integral Hospice WorkI am a distinctive hospice chaplain because I am integrally informed. I am a practitioner of integral spirituality and a student of integral thought, and have been so for 16 years.  When I wrote an ebook about my work, I entitled it Crossing Rivers: Journal of an Integral Hospice Worker.  I have read ten of Ken Wilber’s books as well as some by Stephen McIntosh, Georg Feuerstein, Allan Combs and the great Jean Gebser, taken Level One of the Integral Institute’s Core Integral course, and have been working with the Integral Life Practice book for six years.

The integral theory and practice are essential for my survival at my work, and my thriving as a caring professional able to withstand the daily buffering of grief work in which I am immersed. Integral theory gives me a sophisticated and clear understanding of what is happening before my eyes on deathbeds. Integral practice empowers me to continue to provide unflagging compassion in the face of human despair, considerable dysfunction and intra-family conflict. Being integral even helps me survive all the cursed bureaucratic paperwork I am required to do. When I am called out in the middle of a winter night to visit a home where a death has occurred, and am greeted by a throng of mourners in the clutches of sorrow, when I’d rather be home in my warm bed, it is of enormous help to me that I have a vivid and powerful meditation practice, and am in good physical condition.

The time for lonely, painful deaths has passed… The time to accompany people hand in hand, cherishing their stories, honoring their questions and concerns, has arrived

Upcoming, I will be sharing with Eros & Kosmos three essays about my work as a chaplain, delving into my work and thought. It is spiritual work, happening inside me, but it is also happening in the shared “we space” of internal collective philosophical and historical agreements. It is also work done within social systems, and demanding very specific required behaviors. Existence of an advanced hospice industry, with high standards of excellence, is required now for any advanced 21st century culture. The time for lonely, painful deaths has passed.  There was never a justification for such, other than an inability to enact adequate palliative care, but now there is no excuse, because hospice is here. The time for universal compassion for the dying (all of us, eventually) is here. The time to accompany people hand in hand, cherishing their stories, honoring their questions and concerns, has arrived.  Integral awareness provides elegant and relevant skills for the accomplishing of excellent hospice work.

You will hear from me soon, with Essay One.

Sincrely, John Hughes

About the Author

John Hughes - Джон ХьюсRev. John Hughes, MA in Theology/Theological Studies, founder of Integral Earth, ordained Episcopal priest, and Hospice Chaplain in Wisconsin, USA. Author of the book Crossing Rivers: Journal of an Integral Hospice Worker (2013).