Thirty-two years ago my newborn daughter was discharged from Boston Children’s Hospital after an operation to repair a congenital birth defect and a lengthy period of recovery. Her mother and I had prepared for this—we knew the diagnosis from the ultrasound, had done the research you could do in 1986, asked the questions we could learn to ask—and got a good outcome. We went home to the western end of the state to raise twin daughters, one with a major disability (“our third child,” her mother says), and found ourselves in a system whose existence we hadn’t known of: Early Childhood Intervention. Physical therapists, psychologists, licensed practical nurses, and the state and public–private agencies that supplied and paid them. They cared for our child, but more than that, they taught us how to, and the teaching was as much mental and emotional—call it spiritual—as it was practical. They taught us to watch, to observe, to learn this particular child; to have patience, not to see too much and fall into useless anxiety, not to see too little and miss the signs of trouble. Close watching actually changed our experience of time. I learned what mindfulness meant, even if my practice of it fell short.
Above all, these women (they were nearly all women) were advocates. They advocated for the child to the parents: you have to do this well. They advocated for us to the agencies for which they worked and to those that had aid to distribute. They taught us to be advocates too, in preparation for inevitable emergencies and likely further hospitalizations.
It’s well known now that going into a hospital for anything more than the most routine procedures without an advocate is risky. An advocate need not necessarily be someone expert in the proliferating possibilities of medical response but must be good at asking questions and understanding answers, someone who knows the patient thoroughly, not simply the malfunction at hand or the complication that’s arisen. Someone who can interpret to the medical staff who this patient is when—whether from disease or fear or confusion—she is unable to be herself; who knows what her tolerances and aversions are, and why it will make for a better outcome to treat her in this way and not that way. I have witnessed such an advocate (my wife, L., actually) intervening to prevent the medical team from making an error, which can take courage.
Medical teams now acknowledge the value of this kind of advocacy, even when it demands extra time from them; they want the likely outcomes of treatment, the drawbacks and the possibilities, clearly understood. They want to respect patients’ wishes, and they want their own advice to be useful; they want to offer options—but how are patients and their helpers to choose among them? The greatest need for help in this realm is at the end of life, where increasingly there are choices to be made. Montaigne said we should not worry if we don’t know how to die; Nature will do all that for us, he said, we need give no thought to it. But in today’s world it’s often a matter of negotiation.
Despite the need, not everyone in trouble can summon someone to their side who’s good at the hard work of guidance in this fraught environment. It requires practice, discernment, skill at listening and watching. What I have been learning is that a corps of caregivers exists and can be called upon to help people and families in difficult circumstances, even in facing loss of function, absence of remedy, the suffering and death of loved ones. They aren’t part of the medical team, though they often practice in that environment; nor are they nurses’ aides or home health care workers. The most inclusive descriptor for what they are said to provide is “pastoral care.”
Health care organizations increasingly recognize that meeting the spiritual needs of their patients is part of their mandate, and hospitals must address these needs to receive national accreditation. The provision of care for the sick, disabled, and dying beyond the strictly medical or therapeutic is now a career possibility with many variant descriptions and categories. As of this writing, the online job-search aggregator Indeed listed almost three hundred jobs in answer to the search term “hospice pastoral care,” including hospice bereavement coordinator, spiritual care counselor, board certified hospice chaplain, bereavement counselor, and staff chaplain. A search for “hospital pastoral care” reached farther—over six hundred openings, from an associate chaplain in spiritual care at Sanford Health in Sioux Falls, South Dakota, to a spiritual care minister at Sacred Heart Hospital in Eau Claire, Wisconsin, as well as associate and assistant chaplains and resident chaplains across the nation.
Pastors are shepherds, of course; sheep and shepherds are common in the Hebrew Bible, and are frequent metaphors in the New Testament: “Feed my sheep,” Jesus commanded his followers. I see the term used not only in the literature of Catholic institutions but also that of Islamic, Protestant, and Jewish groups. Hospital chaplains are employees of their hospitals. They visit patients who have selected a religious preference upon admission, though they will visit anyone who might need their help. When my daughter was born, L. (from a Jewish family) and I (with a Catholic upbringing) declined to make a selection; in the long period of my daughter’s first stay in Boston Children’s Hospital, and then in subsequent stays, I don’t ever remember seeing one, and wouldn’t have known how to respond if one had looked in on us.
Susan Harris is a rabbi certified by the Association of Professional Chaplains, though she doesn’t particularly like the word “chaplain,” and “pastoral” rubs her even more the wrong way. “Jews don’t know from chaplains,” she said to me. This doesn’t mean that the work is undefined in Judaism—it is. There are seven chaplains presently at work daily at Boston Children’s: three Protestants, two Catholics, one Muslim, and Susan Harris. It was only recently that the hospital hired a Muslim chaplain, but the need for one would be obvious to anyone walking through the luxurious new public areas of Boston Children’s: like many top American hospitals, it treats people from around the world, and from the Au Bon Pain to the Family Center and the spectacular animation wall, children are almost always there with their mothers—in their arms, in strollers—and one can log an amazing variety of head coverings, hijabs, and burkas, from lavish to plain.
I met Susan Harris when my now adult daughter returned to Children’s for a procedure that turned out to entail far more time and anxiety than had been forecast. The situation called upon all of those watchful waiting skills L. had learned in the early years of motherhood, and which in time she has used on my and her own behalf as well. We hadn’t named a religious preference at admittance this time either, but the rabbi noticed that on a floor under her purview was someone who’d been there over a month. Any patient who’s been in a hospital room for a month, Harris thought, needed a visit. She was welcome; she was a civilian, someone outside the medical team taking an interest; my daughter was glad to talk about nonmedical matters, just talk. We all needed the company.
Later on, in the cubbyhole office she shares with a large printer, Harris took time to talk to me about her role. A compact, cheerful woman, and a mother herself, she lives near enough to bike to work. She’s an ordained rabbi, with an advanced degree in Judaic studies, but a “pulpit-free” one, she says. “I don’t consider anybody I see a member of my congregation. That word implies a certain relationship. As a congregant you expect something from your clergy, you expect leadership. To the extent that I do any leading, I lead from behind. For Jewish families it’s actually an advantage that I’m not a pulpit rabbi; I don’t push anybody’s buttons—I don’t see them as absent from my pews—and that makes a difference to me.”
Harris thinks of herself as a “professional stranger on the bus,” someone to whom people can pour out their hearts because most are never going to see her again. “I am witness to what they’re going through. People need to make meaning out of the randomness or purposefulness of their lives, and in order to make sense out of your story, even to know what your story is, you have to have someone who can listen. I’m often the person people can practice telling their story to, until they figure out what it is. Is it one of loss, is it one of redemption, is it one of punishment, is it one of frustration? Sometimes the story gets reframed along the way, which is why I keep going back.” Some of those she visits see their stories through the lens of theology, and she can do that, claim that authority—if someone asks a rabbi question she’ll give a rabbi answer. But if the question is why is this happening, she’ll claim her own limitations as a human being. “In the moment, there is no reason good enough for why this should be happening. I don’t think ‘why’ questions are helpful. And when it’s something of epic, tragic proportions . . . I believe that even if God, God’s self, gave me an answer, it wouldn’t be good enough.”
Harris’s daily work is plainly more active than this suggests. Patient and family troubles around illness and treatment can generate psychic suffering every day, and it is in this realm that Harris might be able to intervene. “I see this place as a laboratory,” she said. “In every room the same thing is happening: loving parents, a child who’s sick. But different people have very different reactions.” She makes a distinction between pain and suffering: young children, like anyone, can feel pain, and it can be anguishing; suffering requires consciousness, a sense of what ought to be the case but isn’t. “A young man, Jewish, a wonderful, remarkable man, was in to have a surgical bolt removed from his hip. He showed me the hardware. It made me woozy—it was this big. His parents were in the room, literally wringing their hands, and he looked at them and said, ‘Mom, Dad! It’s just pain!’ He was in pain. They were suffering. We’ve all got pain; suffering is a layer over that.”
One of Harris’s challenges is parents who see their role as demanding the best for their child and rousing the medical team to give them definite answers about outcomes. “Families want control over what happens. Hospitals talk about giving parents more control. But we aren’t ever truly in control—if you were truly in control you wouldn’t be here.” The parents are her concern too, and she tends to reach them through her attention to the kids: just talking, as a receptive friend would, to children stressed by their parents’ anxiety. Often she’ll ask young children, What’s your favorite thing about being in the hospital? Not a question you could ask a grown-up, but a child will name the pet-therapy dog, or the artist-in-residence who decorates their room’s wide windows in finger paints, or the game room. The mere presence of a disinterested person can lower the tension in the room. “I’d like to see us develop more capacity for acceptance,” Harris said. “Chill! I’m not a passive person. But there is more struggle than there needs to be.”
My last question to Harris that day was about death. Death is of course common in hospitals, but in a children’s hospital it is surely more devastating. She paused before answering. “There’s a Jewish concept—but it’s not only Jewish—that we are stewards of our lives; we don’t own them. That children are actually guests in our home, and we are caretakers for them as long as we are needed.” Harris once learned of a man caring for a teenage son with a severe heart problem in a room on the same floor of Children’s where the man’s elder son had died of the same condition some years before. Harris offered to help get him a room on another floor, but he declined; he was glad to be where his elder son had been. He was a wonderful boy, the man told her, and it was a privilege to have known him. “It matters,” Susan Harris said to me. “All of this matters. It matters that a parent sits beside a child for months in illness. And I think there should be one person asserting to parents that it does matter.”
Harris has seen, she told me, many deaths: of newborns unable to thrive, whose fate is awful but who have hardly been alive at all; and—far more grievous—of older children and adolescents who can understand a little of what they will never have. Most of the children, though, remain unafraid, blessedly unable to feel the tearing knowledge of loss and the existential dread that grown-ups can. Every death is sacred, and to be a witness to it is a privilege. “Personally,” she said, “I take comfort from the fact that so many before me have successfully died.”
The Children’s Hospital Harris works in isn’t quite the place my family came to in 1987. Even then it was only one of the many large medical facilities that filled the Longwood Medical and Academic area (the LMA), a 213-acre site near the Riverway in Boston: there’s Brigham and Women’s (where our twins were born), Dana-Farber Cancer Institute, Beth Israel Deaconess, Harvard Medical School, Massachusetts Eye and Ear Hospital, and more. It’s far larger now, and growing denser every year. New hospitals, care centers, and research facilities are constantly being built, and older ones are being refitted or converted, merged or expanded. Out of the 2.3 million patients seen every year in the LMA, nearly 100,000 are inpatients. Eighty-one percent of the 57,000 people working in the area are in health care.
Visit any major hospital center in the country and you’ll see—in every clinic, lab, family area, recovery room, and passageway—the name of the individual donor or donors who made that feature possible. (L. often pauses to read them, to wonder who they are.) Major givers now, though, are often banks, corporations, and foundations that attach their names to entire wings, requiring changes to the old nameplates and creating what can only be called luxury hospitals, striking in their design, large public areas, and wards filled with original art and uplifting messaging. A visit to one can be like visiting a corporate headquarters, and perhaps for that reason the style is familiar and reassuring to some. At Children’s, the pretty little Prouty Garden on the ground floor, created in 1956 by a bequest from the then well-known author Olive Higgins Prouty to be a place where children in treatment and their parents could see grass and trees and flowers—a place as restorative and healing as any chapel—was recently removed so that another tower of wards and clinics can be built. The garden was still there when my daughter was on the mend during her last stay, and she took a visiting friend down to it. She noticed a man—a parent, she assumed—sitting in the sun, head in his hands, in tears.
In the Catholic moral system there is a list of works of mercy enjoined on believers. These are broken out into two kinds, seven of each: the corporal works of mercy and the spiritual works of mercy. The spiritual ones include praying for the living and the dead, comforting the afflicted, admonishing the sinner, and so on; the corporal works instruct us to feed the hungry, give drink to the thirsty, clothe the naked, harbor the harborless, visit the sick, ransom the captive, bury the dead. They have been incorporated into Christian practice as Christian, but similar precepts are included in the 613 Mitzvot of Judaism and in Islamic practice; in fact they would seem to be human universals, and to need no explicit divine commandment.
Mercy isn’t compassion, though it can be prompted by compassion. In Islam, Christianity, and Buddhism the recipient of an act of corporal mercy is understood to be—usually unknown to the giver—identical to the divine ordainer of the commandment of mercy. “He who attends on the sick attends on me,” declared the Buddha, when he washed and cleaned a monk lying in his soiled robes, desperately ill with dysentery. Jesus said the same: “I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.” A hadith warns Muslims that on the day of Resurrection Mohammed will say, “O son of Adam, I was ill but you did not visit Me.”
Works of mercy might involve nothing more than tithing, or writing checks to charities. But the acts that Jesus and the Buddha describe require the provider to engage fully with the sufferer, to suffer with, as some spiritual counselors term it, and therefore to become one with the sufferer—to undergo, or accept, or allow in: which is what to suffer means. Sister Melinda Pellerin of the Sisters of St. Joseph, the pastoral minister at Holy Name Church in Springfield, Massachusetts, used the term “walk with” when I went with her on her rounds—one of those spatial metaphors for spiritual work that seem universal: walking, journeying, accompanying, carrying burdens, coming to a crossroads.
Springfield is a once-wealthy manufacturing city that has declined steadily over many decades, losing jobs and businesses. It has a historically deep African-American community and a large immigrant population. Sister Melinda’s visits to the people of her parish, which is now as Hispanic as it was Italian and Irish in her youth, sometimes take her to Baystate Medical Center, an old Springfield hospital now vastly enlarged by—among other expansions—a wing mainly funded by the insurance firm MassMutual. Mostly, though, her visits are to modest neighborhoods in the city.
The religious women who provide most Catholic pastoral care—educating children, visiting, nursing, dispensing charity, organizing prayer for all the living and the dead—are far fewer now than in the past, and the ones active now tend to do the work differently. Sister Melinda receives a salary from the Holy Name parish, lives in a house with four of her sisters, and spends a good part of every working day in her car. She visits the Women’s Correctional Center in nearby Chicopee two days a week as chaplain.
Sister Melinda knew from her childhood that she wanted to be a religious sister, but she wanted other things too. Her family had come from Louisiana to Springfield, where she was born, and she grew up in Holy Family parish, whose redbrick church is now closed. She went to college, got a master’s degree, taught history, was married, lost her husband to cancer, and only then, at the age of fifty, entered the order. Vatican II had changed the lives of religious sisters, and for Sister Melinda it was all to the good. The first African American in the Holy Name congregation, she wears everyday clothes, and only a small silver crucifix on a chain; she’s devoted to Pope Francis. She has a delightful and genuine laugh, and the ways of the old church she and I grew up in get their share.
On my first visit with Sister Melinda, we climbed the steep stairs to Lucy’s tidy apartment, a small two-family not far from the church. Lucy was eighty-five and lived alone with her bird; her unmarried grandson lived below, and Lucy had just learned that he had fathered a child. Another grandson was in prison. Lucy had been prescribed an antianxiety medication by a neighborhood clinic, but it made her dizzy and afraid of falling. She had gone that day to the optician to find that the glasses she was to pick up were twenty dollars more than she’d been told, and she had to hand over the money she had brought to buy bird food. Sister Melinda listened, gave advice, asked whether Lucy was getting help up and down the stairs. “For a long time she was afraid of the stairs,” Sister Melinda told me later. “She didn’t feel able to get to Mass. But she got her courage back, and her grandson and her son help. I see her at Mass now—she catches my eye, gives me a little wave.”
Not all of Sister Melinda’s cases are parishioners, or even Catholics. My Sister’s House, for women recovering from substance abuse, is open to all, and Sister Melinda meets with the residents monthly. She gathered the donated sewing machines the women meet to use as they practice skills and support one another’s goals. We went to a rehab facility—“not the high-end kind; this is for those with limited resources”—where she visited Dan, a recovering addict whose habit had led to blood sepsis, from which he nearly died. A small, buff, rather fiercely exact man, he’d been staying at Michael’s House, a private facility established by the family of an addicted man who committed suicide. There are fourteen residents at present, governing themselves; Sister Melinda checks in once a week. Most have relapsed, some many times; she’s well aware of the odds. Two of the men from the house were visiting Dan when we arrived—a Baptist and a Lutheran. They all got hugs from Sister Melinda. Everybody gets a hug; they solicit one if she looks to forget. At the end of our second day together I got one, too.
What is it that she does? It can seem simple, a friendly visit, but its power for those she visits is large. They all testified to her goodness and their need for her help. She’s not a therapist; she’s not a certified chaplain like Susan Harris or a professional spiritual care provider. Her training is “hands-on,” she says, earned on Chicago’s North Side when she was a novice, and through volunteering in a desperately poor region of Jamaica at a bare-bones orphanage. Sister Melinda helps make appointments and recommends services, but mostly she walks with Lucy and Dan, or sits with them and converses, unhurried; the mercy lies in her evident selflessness, her plain good cheer—the mere fact that she does it, and that they depend on her to do it. The spiritual is the practical.
In 1945 over half of Americans who died did so at home. The percentage is greater the farther back you go; a horror of hospitals was common in the nineteenth century, as they were believed to be places that mostly killed you rather than cured you, an assessment for which there was plenty of evidence. Those sick and dying at home received visits from the doctor; in the once-famous Victorian painting The Doctor by Sir Luke Fildes, a doctor sits by the makeshift sickbed where a child lies; his grave and wise watching suggests how little else he can do.
Over the course of the twentieth century came modern death, which increasingly happened in hospitals, then in ICUs or emergency rooms or rehab facilities, in open wards or in private or semiprivate rooms, with rotating teams of doctors and nurses and an ever-growing array of options for intervention. The common hope and expectation of patients, caregivers, and families was that something could be drawn from that array that would deliver the person from death for some period, short or long, if the bewildering and often dreadful suffering attendant on the procedures could be endured, and if the erasure of personhood with drugs could be endured when the suffering could not. Death after such exertions could seem to both doctors and survivors like a defeat, a robbery.
The destructive consequences of heroic measures repeatedly undertaken with little or no chance of success, whether urged by doctors or demanded by patients, are now well documented and taken seriously in medical practice. Attitudes are changing, in part as a result of doctors speaking about these things more frankly—and humbly. The numbers choosing hospice, watchful waiting, and palliative treatment at the end are constantly rising; in his 2014 book Being Mortal, Atul Gawande asserts that the percentage of deaths at home or out of the hospital is approaching the percentage of seventy years ago:
Whereas deaths in the home declined from a clear majority in 1945 to just 17 percent in the late eighties, since the nineties the numbers here reversed direction . . . by 2010, 45 percent of them died in hospice care.
A move from medical care to hospice care requires doctors to certify, and the patient and family to acknowledge, that the end of life is near. But though the papers and the internet are now crowded with advice about how to face mortality, avoidance (in not admitting its imminence, in not speaking Death’s name around the mortally ill, in rapidly consigning the remains to nonexistence with the least fuss possible) remains the default. Doctors and medical professionals can be conflicted about it as well. Gawande’s account of his own coming to understand death as a possible successful outcome doesn’t say much about the very large cohort of men and women who serve as guides, comforters, and advisers to the dying and (just as importantly) to those who will remain.
I had the idea—not uncommon maybe—that hospice signified a place, a facility to go to when this process was decided upon. But hospice is not a place; it’s a program—minimal treatment for diseases in their last stages, palliative measures to treat pain and anxiety, at-home or homelike circumstances rather than hospital ICUs. There are small hospice centers, mostly connected to religious foundations; but for the most part people in hospice are at home or in care facilities, and the hospice nurses and counselors come to them, making rounds like the doctor in Fildes’s painting—or visiting the sick and the dying, as my own father, a doctor, once did.
Rebecca Richards, now retired, was a hospice chaplain in Baltimore for twenty years, and says that she is still “amazed at the mystery and hilarity and beauty of life.” When she’d tell people what she did, they tended to shrink away a bit—they’d tell her it’s wonderful that she can do that but they never could; it must be so terribly hard. But it isn’t, she says. It’s joyful. There are those, both patients and relatives, who are offered hospice care at home and at first refuse it. “They shrink from the idea of a death in the house,” Richards said, “how it would linger there.” But usually they find they can deal with it. “Most of the time relatives, family, friends show up to do their part. They don’t always do it well, but they do show up.”
Richards’s father died of lung cancer at fifty, when she was twenty-nine. When I met Richards, her mother was in a hospice program, and Richards was caring for her at home. “She’s very clear about what she wants,” she told me. “She tells everybody she can’t do this any longer, she wants to die, to go home to her Creator, and see her husband and loved ones there. Her other daughters live close. It’s kind of a best case.”
Showing families how to speak frankly and stay in the room is a big part of what a chaplain, a hospice worker, or a spiritual counselor does. “If a mother asks, ‘Am I dying? What will happen to me then?’ and they answer, ‘Don’t think about that, Mom, don’t go there,’ then they’re making her journey harder and lonelier,” Richards said. “Nothing that happens in the dying process is not safe. We are safe. There’s no need to panic. Every person who has ever lived has died—it’s exactly as common an experience as birth. But for conscious beings it’s unprecedented, and can be alarming and distressing. You have to help them, the one dying and the family, to see that they are safe.” If the process goes well, people come to see that dying isn’t what they thought it was. “It’s a huge transition for all—but often the one who’s dying has already made that transition.”
The word transition puzzled me, because I could only hear it as meaning a transition from this life to the next, but at length I understood that it means the transition from being an active, living, and doing person with an expectation of more life, to a dying person, with different work to do on behalf of the self and others. It may be that that work doesn’t get completed in even the best circumstances, and last questions go unanswered, approaches are spurned—certainly every spiritual counselor has seen that. As transitions go, this one’s not an easy one, but surely a good death is worth seeking, no matter what ensues thereafter.
When the basic conditions of traditional death are met in the present—a bed at home or a place of equivalent peace and quiet; people around who watch and help in simple ways—then aspects of dying appear that were not removed but only suppressed or disregarded in the era of modern death. Dying people in the bygone world were said to have commonly seen their dead relations or others known to them—not in the hallucinatory trips of the near-death experience, but in the sickroom with them. Those around the bed, who couldn’t see the apparitions, were usually not alarmed or even particularly surprised by these visitors. Sometimes dying persons had visitations from accusing ghosts, or were called to repentance, but mostly they derived great comfort from their presence.
Perhaps, as more people attend differently to dying, these persons in the corners of the room will become common again in stories of the passing of friends and relations, and from these stories new morals might be drawn. Each of the spiritual advisers I talked to has been told of such visitors. It seems that the accusers are much rarer than the comforters these days; maybe antianxiety meds help. Richards told me of a man she attended in a mobile home, undergoing a hard death from cancer, cared for by his wife. On one visit he greeted her with a blissful smile. What is it? she asked him. I’m just so glad, he replied, so glad you’ve brought Bobby with you. He continued in calm happiness until the end of her visit. His wife later told her that Bobby was their son, who a few years before had stepped in front of a truck on the highway.
The rabbi, the minister, and the religious sister were all clear that what lies beyond is no part of their remit. If asked for prayers, they will pray, and they are glad if thoughts of heaven or further life comfort the dying, but those who volunteer as hospice helpers are warned in their training not to use their work as an opportunity to win souls for God—though for some it’s the very reason they signed on. Such moves are regarded by the professionals as more than inappropriate—as almost abusive, Richards said, because they interfere with and cross up the person’s own transition, which is all that matters. Sister Melinda is glad to visit anyone who asks for her. Both Susan Harris and Rebecca Richards say they have learned much from Buddhist thought and practice in recent years, and both see the necessity of removing the self from their encounters, to leave the ones they attend with the space they need to make their own meaning out of life and death.
That meaning gained will remain for the living to have, and can be salvific. In some cultures grief is noisy, and people unburden themselves of it in bewailing; in other cultures, silence or whispers; and in still others, rituals are gone through to assure a good journey beyond. If death is well achieved the one who dies is put away from us even as the passing is mourned. Robert Pogue Harrison, in his profound meditation The Dominion of the Dead, tells us what it is we do: “Just as burial lays the dead to rest in earth, so mourning lays them to rest in us.” Burying the dead is mercy too. The living and the dead can rest in peace.
The totalizing of the hospital environment can be so overwhelming and disorienting that those who come for care risk being reduced to things, a process that modernization always risks; though treated with great skill and effectiveness, you can still be harmed. You can call it trauma, but it’s harm to the spirit and needs spiritual care. The novelist Chris Adrian (The Children’s Hospital), a palliative-care physician and also a graduate of Harvard Divinity School, remembers being “struck during chaplain training by the notion that by employing chaplains the hospital had made a commitment to act against its own tendencies to not listen to and not really care about its patients.” If we don’t have soul supports we can find ourselves alone in modernity, adrift in treatment-time and treatment-space, without meaning, just when modernity has learned that such supports are worth paying for. Adrian suspects that “most pastoral care in the medical context is being practiced by non-chaplains and non-clergy. Pastoral care as practiced by chaplains is a special iteration of a more general practice, which I am almost brave enough to call pastoral medicine.”
Pastoral care is now a mature system in itself, trending toward spreadsheet management of its agency-employed friendly visitors, certified paraprofessionals, secular confessors, graduates of the Islamic Ziyara spiritual care education network, nuns with advanced degrees in pastoral ministry, and trained strangers on the bus. Richards is concerned that the corporatizing of hospice programs will result in damage to the good care that matters to her. “Five years ago a national for-profit provider bought the group where I had worked for fifteen years. They eliminated the local office’s chaplain and social worker positions. Instead, they call each patient from the central office fifty miles away and do the assessments by phone, offering a visit ‘if necessary.’” The group she worked for when we met didn’t do that. It provided good and loving care, though she would have liked to have the staffing to provide something closer to what was possible back when she was a local church pastor, when she might have visited a bedside two or three times a week, or daily at the end of life. But perhaps the balance is right in the end.
A system of corporal works of mercy organized into specialties and paid for by insurance and Medicare depends for its success on human qualities that not everyone possesses. These qualities are hard to select for or to instill, but their lack can be quickly discerned by those who have been sensitized by need. A pivotal moment for Chris Adrian’s chaplain-training cohort came when they looked around the conference room and realized they were administering and accepting pastoral care from each other. “It transformed everyone’s practice immediately and reduced dramatically the sense of fakery we all had.” At the beginning of her career, Susan Harris worked at Massachusetts General Hospital, where she often visited a very old woman who as a child had been sent to a concentration camp; she had a number tattooed on her arm. “Not everyone who touched me in the camps was bad,” she once told Harris. “And not everyone who touches me here is good.”
With luck it will be a long time till my daughter needs a visit from Susan Harris, or her counterpart in whatever institution she finds herself in. May she be glad of her, or him. Even now I would myself be unwilling to sign up for chaplain visits when it’s time for my transition, but it’s clear to me that this elaborated pastoral-care system whose margins I have explored is a good or at least hopeful thing, and anyway it’s what we have in this secular and fragmented age and place. Dependent as it is for its worth on the wisdom and goodness of others, it’s really not that different from what we have had all along, and perhaps it’s the best we can ever hope to have in trouble and pain. “To Mercy, Pity, Peace, and Love,” William Blake wrote, “all pray in their distress”:
For Mercy has a human heart,
Pity a human face,
And Love, the human form divine,
And Peace, the human dress.