Spiritual Ends

Front matter

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Contents

List of Illustrations Preface

1. Soul Searching in the Japanese Hospice 2. The Rhythms of Hospice Care

3. The Heart of Practicing Spiritual Care 4. The Meaning of Spiritual Pain

Preface

The beginnings of this book can be traced back to my experiences working as a chaplain at a large Presbyterian hospital in western Japan between 2009 and 2011. I fell into this unusual job through an introduction arranged by a family friend, a former missionary, who worked for many decades as a hospital chaplain. Although I did not have any training in chaplaincy or prior experience in spiritual care, my job was to visit inpatients in different hospital wards and listen to their concerns; lead chapel services; and assist with hospital concerts, seasonal events, and tea gatherings in the hospice ward, alongside a variety of other tasks. At the beginning, I basically stumbled through my work, anxious that I would say something horribly insensitive to a patient. For many patients, hospitalization was the worst moment of their life. In some cases, it was the last week of their life. At such a time—as one hospice patient put it —"God feels really close”

As I soon found out, however, spiritual care in Japan is a very ambiguous affair. Every day, I would check in at the nurses' station in the ward I was assigned to that month and then walk slowly from room to room to greet new arrivals while trying to project a friendly aura. My superior stressed in no uncertain terms the importance ofavoiding anything that might disturb the treatment or recovery of patients. I was even advised to buy a pair of soft-soled dress shoes and to practice speaking in a slow, quiet voice so as to not annoy patients. When I reached a patient's room, I would softly call out a greeting from behind the curtain that separated each bed from the others, or gently knock on the sliding door of individual rooms, and then gingerly peek in. I wore the standard suit and tie issued to all the office workers in the hospital. In my hand I held a folder that contained a welcome pamphlet, some postcards featuring colorful pictures of the stained-glass windows in the hospital

X PREFACE chapel, and a weekly hospital bulletin. The bulletin included a schedule of upcoming chapel services and other events, an excerpt from a recent chapel message, along with trivia or inspirational and humorous quotes that would help patients pass the time.

As I parted the curtain that lay beyond the door to peek in, I would slip a welcome pamphlet, a postcard, and a bulletin out of my folder, extend them to the patient and say, "Please excuse me. My name is Benedict and I work in the chaplain office. I have brought a few things for you to read.” If the patient was sleeping or not present, which was often the case, I would leave the materials on their bedside table and depart. If they were awake, I would ask, *How are you doing today?" Most patients politely thanked me and then I was on my way. A few let me know that they had no interest in conversing. Others welcomed the distraction, and we would chat for a few minutes. Depending on how the conversation went, I might make a note for a follow-up visit.

During these additional visits, we would talk about almost everything under the sun. Since my appearance betrayed that I was a foreigner, patients were often very curious about me. They commented on my Japanese fluency (I was born and raised in Japan) and told me stories about family members who lived in or had visited the United States—the country emblazoned on my passport. Every so often, we talked about religion. Since I worked at a Christian hospital, patients would often bring up how they had attended a private Christian school or university in the past, or, how they enjoyed listening to the chapel talks that were broadcast every morning to the hospital TV sets, even though their family was Buddhist. But most patients would either preface or end their remarks by saying that personally, they were not religious.

But if most ofthe patients were not religious, nor particularly interested in talking about religion, why was I there? This was also a question many patients had for me. When I introduced myself as a “chaplain” (chapuren), many patients would query with a puzzled look: “Charlie Chaplin?” If our conversations went on for more than a few minutes, they sometimes became concerned that our chat was keeping me away from my “real” job. “Are you sure you don't have any other work to do?” I tried to explain that my job was to listen to their concerns (nayami). But the majority of Japanese patients—who had never heard of such a thing as a chaplain or of spiritual care—genuinely did not know what to make of me.

This sometimes made me, too, wonder what I was doing. More times than I could count, I emerged from a patient's room feeling humbled and inspired by the fortitude they displayed amid the pain and stress of their illness. But as an employee on the hospital payroll, this sometimes made me feel guilty. Was it right that I got to chat with patients all day and feel encouraged by the stoic way they dealt with their illnesses while the doctors and nurses did all the *real work"? Was I really helping patients in any way? As I began studying the practice of spiritual care in earnest, new questions arose. How was spiritual care in Japan different

PREFACE xi from elsewhere? How should spiritual care even be defined? These questions seemed particularly germane in the case of Japan, where hospital chaplaincy is still an emerging profession. What kind of reasoning were religious groups, medical professionals, scholars, and the media drawing on to help promote this new class of spiritual care specialists? There was also the question of what kind of spiritual support patients might want. Considering that most Japanese are dedicated at a Shinto shrine as children, married in a Christian chapel, lead a mostly secular life, and have a Buddhist funeral, what role, if any, does religion play for hospice patients at the end of life? These are some of the questions that lie at the heart of this book.

In grappling with these questions, this book tells a story of how spiritual care was introduced to Japan, how it is being defined and practiced, how patients receive it, and how religious institutions and professionals are trying to shape their role in it. The primary characters in this story are hospice patients, chaplains, medical staff, religious institutions, and scholars of spiritual care. While their roles sometimes overlap, these characters all have different ideas and expectations about what spiritual care in Japan is or should be. For example, hospice patients in Japan really do not have much in the way of expectations at all. Spiritual care is an enigma to most patients, and very few are familiar with the foreign sounding concept of "spiritual care" (supirichuaru kea). Chaplains, in contrast, are supposed to know what spiritual care means—at least in theory. However, their approach to spiritual care is also shaped and constrained by expectations from other stakeholders in the hospice movement. These include expectations by doctors and nurses that chaplains will not abuse their position in the medical ward to impose their religious views on patients; expectations by scholars of spiritual care that hospital chaplaincy represents an exciting story of how religious groups are inventing new ecumenical and psychotherapeutic roles for themselves in the public sphere; and expectations by religious institutions that spiritual care represents an opportunity for social engagement with a Japanese public that increasingly identifies itself as “not religious.”

The story of how spiritual care for the dying is being practiced and defined in Japan serves as a kind of prism through which we can gain greater analytic and descriptive clarity on religious identity in contemporary Japan.’ Historically, Japanese religions provided a cosmological framework and a ritual repertoire for the end of life that helped assure dying persons of an auspicious rebirth or escape from this world altogether. However, Japanese hospice patients today only rarely seek out these assurances. Or, at least, they are not obvious. Because much of Japan's population claims to be nonreligious, hospice workers and religious professionals who work in hospice wards across Japan are expected to draw on a very different set of practices in their care for dying patients. I draw on ethnographic fieldwork in multiple hospices around Japan to pay closer attention to how these practices are negotiated by different stakeholders in the hospice movement. I also xii PREFACE use both local and cross-cultural perspectives to show how global conversations on the practice of spiritual care are being appropriated and reinterpreted in Japanese contexts and relate these findings to a longer story of how Japanese religious groups have pursued vocational roles in medical institutions as a means to demonstrate their ^healthy" role in society. Most broadly, this book seeks to enrich conventional understandings of Japanese religious identity by paying closer attention to the kokoro (heart or mind) as a key site where the affective dimensions of religious and nonreligious identities are enacted.

The elderly Japanese hospice chaplain leaned back in his chair and looked at me. I had just finished summarizing my research project on spiritual care in Japan. His hospice, which we had toured together, was in an airy building enfolded by greenery. From Tokyo it took about an hour by train, followed by a ride on a shuttle bus to the top of the hill where the hospice stood. It was a nice, quiet location, with a distant view of Mount Fuji framed in the large glass windows in the common room. The building, greenery, and large windows projected a space of serenity. It seemed like a good place to die. In the chaplain’s office, I had my notebook and pen ready. To start things off, I asked, “What is your approach to spiritual care?" With a twinkle in his eye, the chaplain replied, “Tve been working at this hospice for more than five years and I am still not doing spiritual care? He chuckled. Then what was he doing? Little did I know that he had just put his finger on what would constitute a major challenge in my research: spiritual care in Japan does not always look like what you would expect.

Soul searching suggests deep reflection. At the end of life, it evokes an image of a patient pensively staring at the walls, perhaps feeling what hospice workers call "spiritual pain? This term was popularized by Cicely Saunders (1918-2005), the founder of the modern hospice movement, who used it to describe a pain caused by a “desolating sense of meaninglessness” that accompanies the process of dying.’ In North America, for instance, spiritual care is commonly framed as a mixture of sacramental and psychotherapeutic forms of care that focus on helping patients find religious consolation or address the existential *meaninglessness" brought about by impending death, as well as the anxieties caused by guilt, loneliness, or fear of the afterlife. Accordingly, much of the extant English-language literature on spiritual care at the end of life emphasizes strategies for responding to patients' questions about existential meaning or purpose in the face of suffering. Or it offers to guide them in a search for transcendence.” In the face of such spiritual pain, a hospital chaplain might come by and ask how you are doing. If you belong to a faith tradition, they may offer you communion, Shabbat candles, or prayer. More often, as the population of nonreligious patients has increased in Europe and North America, the religious dimensions of spiritual care are offered in a more fragmented or less prescriptive manner.’ At its core, spiritual care is depicted as a “ministry of presence?" Chaplains are expected to “be there" for the patient and to accompany them on their spiritual journey at the end of life.

In Japan, where terms like "chaplain" and "spiritual" invite a blank stare from patients, this framework only goes so far. After all, as the elderly chaplain explained to me, onlya small minority of Japanese hospice patients openly articulate a spiritual pain that is centered on existential concerns. Even fewer patients ask for religious forms of care like prayer. In fact, most of the patients that chaplains encounter in the hospice ward seem outwardly dismissive of questions about the meaning of their life, suffering, their relationship with God, guilt, forgiveness, or any other “spiritual concerns” that are typically imagined lying at the core of spiritual pain. Even when patients seem concerned about these issues, often, they would rather not show it. Instead, most Japanese hospice patients direct conversation toward other anxieties—such as a strong fear of becoming a burden on others or an inability to fulfill their social or familial responsibilities. As a result, spiritual care at the end of life in Japan frequently attends to these and other kinds of needs instead.

AIMS AND OVERVIEW

This book aims to depict spiritual care in situ, through ethnographic fieldwork and interviews with hospice patients and workers, to provide a richer understanding of the way contemporary Japanese approach the end of life, and how spiritual care is provided by hospice workers in ways that they feel will meet patients’ most common end-of-life needs. Spiritual care in Japan often goes beyond helping patients address their “spiritual pain” through counseling, religious support, or being a sympathetic presence. More often, spiritual care in Japan is conducted in the margins of daily care, such as through special hospice events or in the course of prosaic activities that chaplains and other hospice staff view as conduits for a kind of spiritual care that makes patients feel valued and appreciated at the end of life.

This is readily seen in the following chapter, “The Rhythms of Hospice Care,” which focuses on the daily routines of care by doctors and nurses. I offer glimpses of the way patients are discussed during morning conferences, shadow a doctor as she does her rounds, explain how new patients are informed of their prognosis, observe how patients and their families are cared for in their last moments, and describe the intense emotional labor that medical workers must perform throughout the day. As I detail these daily rhythms of care, I pay special attention to how doctors and nurses interpret their daily medical responsibilities in relation to spiritual care, such as stressing the importance of care for the heart (kokoro) and helping patients “be themselves” as they approach death (jibunrashiku shinu).

In chapter 3, “The Heart of Spiritual Care,” I turn my attention to how hospice chaplains care for patients. In Japan, chaplains at the bedside are aware that it is rare to have an opportunity to offer prayer, recite sutras, conduct sacramental rites, or candidly discuss religion and existential issues with dying patients who have never even heard of spiritual care. Accordingly, chaplains spend much of their day attending to patients in ways that go beyond traditional models of pastoral counseling, religious support, or being a sympathetic presence. I outline three broad categories of spiritual care that chaplains and other medical staff provide and argue for the particular importance of “supportive care,” which stresses the importance of supporting the patient's ability to die in a way that reflects who they are. I also outline how Japanese patients and staff offer less resistance to this indirect and supportive approach to spiritual care. Despite the often-repeated mantra in spiritual-care literature that it is more important to be there for patients than to do something for patients, I show that hospice staff and chaplains in fact do many things in offering spiritual care. While many past studies on spiritual care in Japan offer idealized models of spiritual care or demonstrate the larger religious and social contexts for such spiritual care, they often lack attention to the actual lived practice of spiritual care in the hospice setting. What does a typical day look like for chaplains? What are some of the concrete ways in which they interact with patients? What practical principles guide their work? These are questions that have yet to receive concentrated attention.?

It is important to interject by saying that this type of spiritual care is not necessarily unique to Japan. At many points in my research, North American practitioners of spiritual care would listen to my findings of what goes on in Japanese hospice care and say, “That sounds just like what I do? Even in societies where many patients are highly religious, such as the United States, hospital chaplains are starting to gravitate toward a kind of care that is fundamentally relational and supportive of the patient rather than explicitly religious.* This is exactly why the study of spiritual care in Japan has a broader global significance. As a highly secularized non-Western modern nation with a population that is aging faster than anywhere else in the world, Japan represents an important case study for understanding how spiritual care is provided to hospice patient populations that identify themselves as nonreligious.

Chapter 4, “The Meaning of Spiritual Pain,” pivots from caregivers to patients by scrutinizing spiritual pain—the clinical term that refers to the existential suffering that dying patients are said to experience in the face of death. By collating interviews with hospice patients, I examine several reoccurring themes in the types of anxieties dying patients face at the end of life and where they turn for support. I then show how the anxieties Japanese hospice patients voice call into serious question the clinical category of spiritual pain, even while, in some cases, they support it. Many Japanese patients are unlikely to openly express their anxieties in religious or existential terms. Nevertheless, there remains a fundamental tension in the concept of spiritual pain because chaplains suggest that spiritual pain can also be latent, repressed, or sometimes just poorly articulated by Japanese patients. This shows how, on one hand, discourses of spiritual pain and care can serve the needs of religious professionals and medical workers at least as much as the needs of patients. On the other hand, chaplains genuinely believe that spiritual pain can be manifested in subtle ways that elide the clinical gaze.

This book also uncovers how Japanese hospice workers and scholars of spiritual care are soul searching— quite literally—to define the nebulous concept of spirituality. The most basic question that spiritual caregivers in Japan grapple with is, “What is spirituality?” The English word “spirituality” is usually left untranslated and simply transliterated into Japanese kana syllabary as supirichuariti. In recent years, many studies have been published by Japanese hospice workers and scholars that aim to delineate the spiritual from the physical and psychosocial dimensions of hospice care.

In chapter 5, “The Invention of Japanese Spirituality,’ I explore several such definitions of spirituality and spiritual pain and show how these studies invariably present spirituality in clinical settings as a discrete dimension of personhood, which resides in all patients and becomes awakened in the face of an existential crisis like death. This medicalized view of spirituality echoes the World Health Organization's definition of palliative care, which distinguishes between the spiritual, physical, and psychosocial dimensions of personhood. However, I suggest that these efforts to define spirituality in hospice care tend to ignore the diffuse ways in which hospice workers actually attend to the spiritual needs of patients in practice. By critically engaging with the invention of the term “spirituality” in Japan and looking at how this ambiguous concept has been applied in clinical settings, I demonstrate the way the term “spiritual” and its cognates work as floating signifiers; they primarily function as negotiable boundaries. That is to say, they help different stakeholders in the hospice movement to maintain or contest the acceptable parameters of religious care for dying patients. I also detail how this search for spirituality is part of a global conversation in which both Japanese and other understandings of spirituality are being transposed and reappropriated across cultural boundaries. Ultimately, I suggest that spiritual care in Japan is better described as a type of care for the kokoro—a concept with less historical baggage that also better captures and illustrates the importance of the affective dimensions of religious practice and identity in Japan.

A final aim of this book is to show how contemporary Japanese religious groups, and especially contemporary Buddhists, are looking to spiritual care as part of the answer to the ongoing soul searching about their role in Japanese society. Statistical indicators of Japanese religiosity have consistently shown the declining importance of religion in Japan.’ After the new religious group Aum Shinrikyo carried out a sarin-gas attack in the Tokyo subway system in March 1995, many Japanese came to view religion with deep suspicion. In the aftermath of this attack, which claimed thirteen lives and injured over six thousand others, public trust in religious organizations was deeply eroded.? Even in regard to death rites, which remain a traditional bastion of Buddhist influence, surveys continue to show a decline of religious beliefs and practices.? Today, when I ask my Japanese university students (who were all born after the Aum attack) what the word "religion" means to them, they regularly respond with adjectives like "scary" (kowai), "suspicious" (ayashii), and “creepy” (kimoi). This generally negative impression of religion has been a consistent feature of Japanese society for at least the past two decades, if not longer. As Japanese religions have seen their public role and prestige in society shrink, for Buddhists in particular, there has been much handwringing about being pigeonholed as nothing more than funerary specialists.

In this context, a small but growing number of Buddhists have come to see their involvement in hospice care as having the potential to combat longstanding negative stereotypes about the work of Buddhist priests as confined to funerary and memorial rites. For religious professionals in Japan more broadly, including Christians and members of new religious groups, the establishment of new vocational roles in hospitals, a paradigmatic modern social institution, represents a potential avenue to dispel the suspicions and preconceptions many Japanese harbor toward organized religions. Care for the kokoro represents an opportunity to demonstrate the positive role religion can play in Japanese society. However, this soul searching on the part of religious professionals is by no means new. Rather, as I demonstrate in chapter 6, "Making Healthy Religion; the vision of promoting spiritual care in the hospice is embedded in a longer history of religious engagement in modern medicine, dating back to the late nineteenth century, that reveals a persistent attempt on the part of modern Japanese religious groups to show the "healthy" role that religion can play in society.

This book begins by describing the day-to-day nuances of spiritual care and then sequentially zooms out to situate spiritual care in its broader theoretical and historical contexts. The details on the daily practice of spiritual care in chapters 2, 3, and 4, which are primarily ethnographic, will not only appeal to scholars and students of Japanese religion, but also to healthcare practitioners around the world with an interest in what spiritual care looks like on the ground in Japan. Chapter 5, which examines theoretical discourse on spiritual care in Japan, offers a deep dive into debates about the dividing lines between religion and spirituality from the perspective of Japanese clinical and academic literature on spiritual care. This chapter will appeal to chaplains engaged in spiritual care as well as scholars interested in critically interrogating the application of "spirituality" in health care settings. Chapter 6, which documents the history of religious engagement in medicine and the birth of hospice care in Japan, may be of particular use to those with an interest in the history of socially engaged Buddhism as well as the historical relationship between religion and medicine in Japan more broadly. Chapter 7, "Last Thoughts,’ tries to bring this all together.

THE NEED FOR HOSPICE CARE IN JAPAN

Japan is currently in the midst of a dramatic demographic crisis with profound implications for its society. As of 2020, 28.796 of Japanese were aged sixty-five or older—the highest percentage in the world.!! By 2065, this number is expected to rise to a staggering 3896, meaning that more than one out of three Japanese will be sixty-five or older.” This rapid aging is driven by Japans low birthrate, which currently hovers at about 1.4 births per woman. This number actually represents a slight improvement over an even lower rate of 1.2, which was recorded between 2003 and 2005. Although the Japanese government has worked urgently to institute various policies that encourage families to bear more children, these have only been marginally successful, and the birthrate remains well below the replacement fertility rate of 2.1. Accordingly, Japans total population is expected to decline by about forty million people, from its peak of 128 million in 2008 to approximately eighty-eight million in 2065. This progressive graying of Japans population has already begun to put extreme pressure on families who must care for their elders at the end of life."

The growing need for hospice care in Japan is not only tied to Japan's rapidly aging population, but also to important changes in the structure of Japanese households that have affected the ability of families to care for their elders. Over the last several generations, the relative number of nuclear families has risen in Japan, while the number of three-generational households has declined. The number of single-member households has also risen. These changes are often attributed to the rise of conjugal ideals that emphasize living apart from one’s parents, as well as the space constraints of urban living. Thus far, however, these changes have not completely undermined the traditional Japanese stem family since many children will move back home to care for their parents in their hour of need.

Even still, the resilience of traditional family structures in Japan are being tested today in new ways. Simply put, even if children are willing to move back home to care for their parents, without large-scale immigration or a change in Japan's low birth rate, there are simply not enough children to care for their elders. In the past, daughters-in-law traditionally bore the responsibility of living with and caring for their husband's parents. However, this task has become increasingly onerous, as the number of married women who choose to remain in the workforce has grown. Moreover, if a daughter-in-law is an only child, she is likely to be held responsible for the care of her own parents as well. In rural areas, where depopulation is particularly acute, the problem is compounded by a lack of job opportunities that would allow children to return to their hometowns. This demographic crisis has no immediate solution in sight as Japans birthrate remains stagnant and the possibility of large-scale immigration remains politically unpopular. Coupled with Japans life expectancy rates, among the highest in the world, the prospect that a growing percentage of the current population will live well into their eighties and nineties presents a genuine dilemma. Who is going to care for their elders as they approach the end of life?

WHERE TO DIE?

For most Japanese, the default place to die is the hospital. This is particularly true for cancer patients. Currently, cancer accounts for nearly a third of all deaths in Japan and remains the leading cause of death among those between the ages of forty to eighty-nine. In 2019, 4.3% of Japanese cancer deaths occurred in a nursing home, 12.496 at home, 69.996 in a hospital or clinic, and 13.496 in a hospice. Although only slightly more than a tenth of cancer deaths currently take place in a hospice, this number is trending upward. For example, in 2000 only 2.596 of cancer deaths occurred in a hospice and 90.6% of cancer deaths took place in a hospital.

There are many benefits to dying in a hospital. First of all, it is convenient. In fact, dying in a hospital may be the only realistic option for those who live in rural areas with no hospice care nearby. Dying in a hospital also ensures that patients retain access to life-extending treatments until the very end. Having full access to a range of diagnostic and treatment services is no small consolation for patients who wish to extend their life as long as possible. For example, one patient I met during my fieldwork had been battling cancer for more than a decade before finally entering a hospice. She had undergone every possible treatment and had visited countless specialists. She told me that some patients liked to complain about the side effects of multiple treatments, but she had a different perspective: "I say, if you dont like it, you can go home. Your cancer will just get worse? Although this patient eventually embraced hospice care when she had run out of treatment options, it was clear that battling cancer until the very last minute was important for her. Refusing to go gently into the night helped her cope with death.

However, for most patients, dying in a hospital is far from ideal. This problem was laid out most clearly by Yamazaki Fumio in his 1990 bestseller Dying in a Japanese Hospital, which was later made into a film. Yamazaki shares the stories of five patients who died horrible medicalized deaths, contrasted with five patients who died dignified, humane deaths, and argues that Japanese hospitals were too focused on treating the disease at the expense of the person. Yamazaki describes an interaction between one patient and his doctor: “The concern of the doctor in charge of him rapidly receded once it was seen that the treatment had little effect. When he came on his rounds, he didn't look Kinoshita in the eyes. All he did was to encourage him in a loud voice. Then he hurried away. He was interested only in the cancer, not in Kinoshita as a person?" Yamazaki concluded by calling on medical workers to treat patients more holistically, with fewer medical interventions, with fuller and more honest prognosis disclosure, and to make spiritual care available to all patients. Basically, he called for more hospice care.