Caring for the Dying

My patients, my work, my faith

Friday afternoon at the hospice center. I punch in and eye the “white board,” looking for empty white strips and unfamiliar names, quickly piecing together who has died, who is still living in this eighteen-bed facility. I start at the bottom of the list, Room 19 (no Room 13 here—these folks have had their fair share of bad luck). Room 19 is the stomping ground of the Delgado family.* Miguelito, five years old, with his bald pate and big eyes, is speeding up and down the hallways in a motorized Big Wheel. His two older sisters will be coming “home” from grade school soon, and his younger sister, Lily, is being her cute, showboat self, hanging out once again at the nurses’ station while mom naps on the extra bed in Miguelito’s room.

In Room 18 is Faye Niesen, whose family complains about the Delgados, then feels badly about complaining, and then complains some more.

In Room 17 is petite Eleanor Kempe with the gimlet eyes and the protruding abdominal tumors that make this eighty-two-year-old look oddly pregnant as she sits and watches Mother Angelica on EWTN. Eleanor keeps a pocketbook tucked just so at her left hip, under the sheets, and Kleenex tucked just so up the right sleeve of her thin bathrobe. Second only to Mother Angelica in Eleanor’s mind is the Food Network’s Emeril, whose trademark exclamation “Bam!” pops out like bullets from at least five or six rooms on the unit, each night. The Food Network is big here, very big.

In Room 16 is the John Roth family, with Miles Davis on the CD player and pale ale in the cooler. They were hanging out last night, and they’ll be hanging out tonight and through the weekend, spirits never flagging, manners always impeccable, their love for their husband and father and brother deep and wide and joyful.

In Room 15 is Franklin Schuebel, ninety-five years old. Mr. Schuebel desperately misses his wife, who died last year. Each night he waits patiently as I listen to his heart and lungs. As soon as I remove the stethoscope earpieces from my ears, he pops the same disconcertingly hopeful questions about being reunited with his wife. “How do they sound? Are they bad? Do you think tonight might be the night?” “No, Mr. Schuebel, everything sounds pretty good in there. Probably not tonight.” He sighs a resigned, tired sigh. He pats my hand. “Some day,” I say. He smiles broadly.

In Room 14 is Steve Wilkins, forty-eight years old, who will die tonight, and whose seventeen-year-old daughter will scream when he does. It will unnerve everyone, because we’re not used to screamers. Friends imagine that where I work there must be a constant drone of keening and sobbing. There isn’t much of that. This seventeen-year-old will cause me to think back, over six years of work on two coasts and in three cities, to the last time I witnessed wailing at a deathbed. The emotion most prevalent here when death comes, as it does almost daily, is relief.

In Room 12 is “Airman” Mike Grable, an African American and former professional wrestler, whose seven children will one day soon accompany his barrel-chested body down the long corridor, past the nurses’ station, through the lobby, and out the front door, singing “Amazing Grace” as they go.

The north-wing patients are present and accounted for.

The evening nurses and aides go to listen to the taped report left by the day shift. It is both relentlessly sad and unfailingly hopeful, peppered with facts about vital signs taken, symptom-control efforts made, new physician orders received. A day-shift staff nurse, Mary, the preacher’s wife, comes in and interrupts our listening to announce a new admission. Her first words: “Can we just stop admitting the patients with wingnut families, just for a few days? My Lord and Savior, I just cannot handle one more.” After the chuckling dies down, we listen closely to what Mary has to say. We don’t take the wingnuts lightly, because memories are still fresh of one of our favorite patient’s sons being caught in a supervisor’s office trying to heist a laptop. Police were summoned, restraining orders rendered. As a result, a Post-It note went on the receptionist’s computer identifying another family member not permitted entry to the ward. That note is still there, sitting above the other Post-It listing all the relatives not allowed to receive information about one patient or another. That list is always present—sometimes short, sometimes impressively, depressingly long.

It is a quiet but lively place, this unit. Periodically, ambulance drivers come with their bright orange stretcher contraptions, bearing sedated patients whose pale faces look tiredly out over white sheets and blankets, a small passel of family members bringing up the rear.

And while many of these patients end up being discharged to their homes after short stays, a great many of them leave on the black stretchers maneuvered down the corridor by funeral-home attendants, the same small passel of family members bringing up the rear.

What happens while they’re here cannot but prompt reflection.

 

A dying man needs to die, as a sleepy man needs to sleep,
and there comes a time when it is wrong, as well as useless, to resist.

—Stewart Alsop


I am a nurse practitioner by training, and the field of hospice and palliative care is my métier. I have assumed various roles and performed various duties over the years, spending time as a “field nurse” visiting hospice patients and families in their homes, as a hospital-based palliative-care consultant tending to terminally ill patients in the hospital or being discharged, and as a nurse in a freestanding hospice facility.

Saying that I love this work prompts people to think I must be a saint (that would be a “no”) or a scythe-carrying sicko (ditto, I hope). What attracts others and me to this work, I think, is the privilege of dealing on a daily basis with life in the raw. There is very little that is superficial about caring for the dying. Hospice patients and their stories are a refreshing oasis from the world of artificial hype and imagined crises—not all crises outside a hospice are imagined, of course, but many are. My work requires a daily recognition and acceptance of the human condition. All the parties involved come to understand that, yes, this particular person’s days are numbered, that there will be a death here, and that we will do all we can to accompany this person along the road that leads to death. That is something people need to hear, and participating in such care is not a bad way to use one’s talents.

The theologian Karl Rahner noted, “We do not always dwell at the core of our incomprehensible being, we stay on the surface, we are exiled to humdrum, bustling everyday life. Yet once in a while, we too are thrown into the mystery of guilt, death, forgiveness, and unfathomable freedom that issues from God into the midst of our life.” Hospices do not place “Help Wanted” ads touting “Guilt! Death! Forgiveness! Freedom!” Still, these mysteries—whether spoken about or not, whether explicitly engaged or not—are omnipresent in my work. It is a humbling and enlightening thing to be, essentially, a participant observer in thousands of final scenes.

 

May you always do for others and let others do for you.
—Bob Dylan, “Forever Young”

 

There are a few things one learns, playing a bit role in the lives of the dying and their families. One is that “death with dignity” is an ambiguous term. Another is that suffering is part of the human condition, and trying to stamp it out or ignore it or gloss over it is a dangerous illusion.

In the fall of 2000, Bill and Judith Moyers presented a four-part PBS television series on death and dying. A New York Times op-ed piece about the series revealed that the Moyerses had disagreed about what it should be titled. Bill wanted to call it Living with Dying. Judith, his wife, wanted On Our Own Terms: Dying in America. Bill thought that Judith’s title pandered to the worst impulses of Americans about the value of autonomy and self-sufficiency. Judith won, but Bill was right. Life cannot be grasped simply on our own terms. Death, even less so. And yet, “On Our Own Terms” is the way the cultural discussion has taken shape, especially among graying Baby Boomers. “We all have a right to die on our own terms; we all have a right to die with dignity,” goes the mantra.

It all depends. Everyone, from prolife vitalists to Hemlock Society cheerleaders, speaks in terms of “dignity.” Yet the definitions of dignity are all over the map. As a nursing student I read an article by a nurse researcher, Jane Haddock, whose work had led her to posit a summary profile of the “dignified self.” The profile included the attributes of “self-control, control of environment, autonomy, and independence”—all of which the dying person is hard-pressed to hold on to. Haddock went on to conflate dignity with self-esteem, and to suggest that “to ascertain if one possessed dignity, self-esteem could be measured using a scale.” I doubt it. How does one quantify the language about human dignity in the UN Charter? And what about that tenacious notion that we are creatures made in the image of God? Can we really get out the Likert attitude scales and plot whether someone possesses dignity or not? Sadly, “concept analyses” like Haddock’s, and the mindset they represent, are standard fare in the world of health care. They don’t do us much good in the hospice facility.

If we consider ourselves masters, rather than stewards, of our lives, then dying and death are the ultimate indignity, and the rooms and hallways where I work are filled with indignities piled upon indignities, clear up to the rafters. If our definition of dignity in the dying process is built only on happy accidents like continence, or strength, or the ability to utter profundities until our last breath, or independence—and if we are committed to people having “death with dignity”—then we will panic as strength wanes, Foley catheters need placing, interaction gives way to sleep, and independence mutates into dependence and helplessness. Wanting to dignify death, we soon will want to hasten it.

There is an understandable desire for a neat and ordered segue from life to death. Just ask the state “surveyors” who evaluate and accredit our facilities and who pore over our patients’ charts, looking for evidence that we have, as they put it, “accomplished the goals of the care plan,” and that patients have benefited from our ability to arrange for them freedom from suffering.

Benefit. Freedom. Suffering. All loaded words. Certainly, physical pain ought to be aggressively treated—and only recently have we recognized how often that task is not performed nearly as well as it could be. Yet just as certainly we must resist the temptation to try to stamp out the suffering that comes with our connectedness to each other. Physician Ira Byock talks about the “Five Things” that must be said if there is to be closure in a significant relationship: “Forgive me. I forgive you. Thank you. I love you. Goodbye.” If we imagine that there is a way to get through some semblance of that list and not suffer along the way, I think we are naive.

Acceptance of the human condition—not horror at its indignities—is the best way of combating the influence of those who feel compelled in their own well-meaning way to hasten death’s arrival. In my experience, three things are needed at the end of life: first, a recognition that dignity is something to be honored in people quite apart from their abilities and failings; second, an inclination and a commitment on the part of people—professionals and nonprofessionals alike—to step up and care for dying persons as their ability to care for themselves wanes; and third, a willingness on the part of the dying to allow themselves to be cared for. These three needs are huge and often unmet in a culture that can barely make sense of any of them and supports precisely none of them.

 

Allowing and helping a patient to remain true to individual character
and personality to the very end—even if that entails bitterness and anger—
is preferable to the uninvited interdisciplinary team of health-care professionals
energetically hectoring the dying patient to change personalities at that late date
and making the patient feel additional guilt and shame for resisting
the thanatologically sensitive experts’ injunctions to “have a nice death.”

—Marshall Kapp, “The Right to Die Mad”

 

I read these words to my colleagues, assembled for our weekly “interdisciplinary” team meeting. They laugh heartily, veterans all. For the rest of the meeting, we keep interrupting the social workers’ reports: “But did you tell him to have a nice death?” We know Kapp has a point, one we hope we each learned long ago. We only wish the surveyors who assess our performance would embrace it.

Hospice workers have an axiom, “People die the way they live.” Although that is not always true, it usually is. Cranky people die cranky. Abusive alcoholics die terrorizing their frightened spouses. Eminently practical people die concerned about eminently practical things. You would not last long working in a hospice if you went around energetically hectoring people to make their way through Ira Byock’s list of the five things people need to say to reach closure.

Some patients and families are veritable black holes of need, with generations of sin and dysfunction that hardly lend themselves to easy understanding, let alone tidy solutions, happy deaths, and what the bereavement experts call “uncomplicated grief.” Affixed to the wall above my desk is a scrap of paper with this reminder from H. L. Mencken: “For every human problem there is a solution that is simple, neat, and wrong.”

Hospice workers know—but sometimes forget—that we are seeing just the tip of the iceberg of people’s histories. When my own father was dying at home, I spoke with his hospice nurse by phone from afar and listened to her assessment of my dad’s situation. She did—and didn’t—have the family pegged. Once home I met her—a wonderful woman—and later, sitting vigil, winced a bit as I imagined her at weekly staff meetings, giving her patient summaries just as I give mine, summing up whole worlds in a few sentences while around the table heads nod knowingly.

I often find myself, when I am visiting patients in their homes, in the position of being the last new person to get to know them, of being the last nonfamily contact with the outside world. Sometimes I am rather absurdly but quite obviously looked to as the embodiment of “the world,” as in, “What does the world think of me? How will the world remember me?” Opinions about the dying person are already well established and seemingly unshakable among family members. It is with the visitors from hospice that the dying person has a last chance to be better than he really was. That’s fine with me. Quite honestly, I am sometimes thankful for what I don’t know about my patients’ lives.

As death nears, emotional needs often loom large, but are so seldom spoken. One can do a fair bit of damage energetically hectoring someone to speak them, but perhaps just as much damage by pretending they don’t exist. Spoken or not, acknowledged or not, the needs usually run something like this: I need everyone to know I didn’t “give up” against the cancer. I need to know I wasn’t a terrible parent. I need to know that the nurse and the aide and the doctor caring for me actually like me. I need to be forgiven.

It is possible to have whole conversations about these topics without speaking a word. A wise hospice physician from Scotland once adapted an old adage to remind his colleagues: “There are three things you need to practice good palliative care: a pair of ears to listen with, a butt to sit on, and a mouth to keep shut.”


Caring asks doing...better immersion than to live untouched....Yet how will you sustain?
—Tillie Olson, “O Yes!”

 

  It’s 9:30 p.m. on the unit. The Delgados have become so many lumps under blankets on the beds, the couch, the floor. I learned that lesson the other night as I unsuspectingly stepped on tiny Lilly as I tiptoed into Miguelito’s darkened room to administer, through the “central line” sutured into his chest, his final medications of the day. It is against his grieving father’s chest that Miguelito’s sedated body will be pressed weeks later after a morning of fright and struggles for air. Death will come that afternoon, quietly, before his doting sisters return from school.

Faye Niesen is asleep, mouth open in a smile, lit by the blue light from the television, her constant companion and security blanket. Soon she will be sent home, and we will hear of her protracted decline but ultimately peaceful death from our field-nurse colleagues.

Eleanor Kempe is awake, waiting for the miracle she knows will come. Hyperalert, she watches me hook her gastric tube back up to suction, removing from her all that she has taken in for supper, all that would never get past her bowel obstruction and so is vacuumed out before it all comes back up on its own. “Do you think the food was in there long enough for my body to make use of it?” Eleanor asks me. She asks everyone—aides, nurses, physicians, volunteers—the same question, night after night, and ponders the vagueness and inconsistency of our answers. She will soon die, no longer expecting a miracle—not devastated and angry, as we had feared, but surprisingly serene.

John Roth’s family welcomes me in with smiles. Frank Morgan’s Mood Indigo has replaced Miles Davis on the CD player. A daughter follows me out into the hallway. “Those doors to his patio—a bed can fit through them?” “Sure,” I say. “We could wheel him out there?” “Sure,” I say. A few days later, the sun will be shining, the breeze blowing, and the omnipresent family scattered around the patio when John draws his last breath. Each time there’s a “patio death” I think of Saint Francis, hoisted outdoors in his last hour by his own request, that he might die lying upon the cool brown earth.

Franklin Schuebel, sweet Franklin Schuebel, lies still, his face spotlit by a bit of light from under the bathroom door. I wonder if, after all, tonight is his night, but after a long apneic spell, his diaphragm rises up, then gently falls. I move on.

Steve Wilkins’s family is restless. Most of them, including his children, I have not met before. The teenage daughter glares at me. She is wired. The whole family is wired. I wish I knew them better. I wish Steve were not dying.

In Mr. Grable’s room, one daughter remains. “How do you keep doing this work?” she asks me. “Isn’t it depressing?” No matter how many times I am asked that question, it still takes me by surprise. I am not the one with the chronic disease, dealing with the ravages of it on my body and grieving the impending loss of my life and all that is dear to me. Even more to the point, I am not a family member who has been shouldering the multiple burdens of caregiving, of medical bills, of contemplating life without my beloved. It is a strange thing to walk the hospice hallways, amidst such suffering, and to have a question posed about my sustenance.

I am tongue-tied not only because the question seems directed to the wrong party, but because I struggle to put acceptable words to the images and feelings that crowd my mind. “Should I just say it?” I think. “Should I just say, I pray?” For the Dorian Gray families, ugly from decades of sin and dysfunction; for the relentlessly cheerful patient with ALS who smiles even as she cries about no longer being able to walk in the woods and weed her garden; for a twenty-six-year-old patient’s mother, stricken and wide-eyed, absolutely certain that her lapsed Lutheran son will be going to hell; for the family of a strong and vibrant colleague who just weeks before had been bathing patients but then occupied a room of her own among them, preceding into death many of those she had bathed. In prayer, as in life, the neat categories I have given above—patients, families, professionals—all meld one into the other. We are all the living; we are all the dying, all of us sustained by grace and mercy and love.


* All the names of patients in this essay are pseudonyms.

Published in the 2004-01-30 issue: 

Mary Lee Freeman, a former Commonweal intern, is a nurse practitioner.

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