Palliative care never ends with anything other than death. This blogger saw his father die of cancer that had metastasized. It was not a pleasant way to go. He had home hospice visits from a nurse, but the attending physician told this blogger that the nurse was doing more for the blogger's mother than for the patient. Then, 30 years later, this blogger watched his 93-year-old mother die of congestive heart failure while receiving palliative care. Neither experience was pleasant and this blogger hopes a death in his sleep rather than a one-way visit to a hospice facility. If this is (fair & balanced) appraisal of end-of-life care, so be it.
[x The New Yorker]
The Threshold
By Larissa MacFarquhar
TagCrowd cloud of the following piece of writing
Heather Meyerend is a hospice nurse who works in several neighborhoods in South Brooklyn—Sheepshead Bay, Mill Basin, Marine Park, Bensonhurst, Bay Ridge. She usually has between sixteen and twenty patients, and visits each at home once a week, sometimes more. Some patients die within days of her meeting them, but others she gets to know well, over many months. She sees her work as preparing a patient for the voyage he is about to take, and accompanying him partway down the road. She, like most hospice workers, feels that it is a privilege to spend time with the dying, to be allowed into a person’s life and a family’s life when they are at their rawest and most vulnerable, and when they most need help. Some hospice workers believe that working with the dying is the closest you can get on earth to the presence of God.
Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.
Dying can be long and bewildering, lonely and painful, frequently undignified, and consumed by pressing and unpredictable and constantly changing and multiplying needs. It’s a relief to have someone around who understands what’s going on and what may happen next. On the other hand, when dying is long it becomes ordinary, just another kind of living, but one in which your friends may be gone and your children busy, or not busy enough. In that case, it can be a good thing to see someone who is not a member of your family; who comes from the world outside your illness; who has known you long enough to be familiar but not long enough to have heard your stories already; who wants to know where your pain is but doesn’t need you to explain everything; and who is there to take your vital signs but who behaves as though she might have come over to borrow a snow shovel or a couple of eggs.
Hospice used to have a countercultural air about it: dying at home seemed, for a while, as unconventional as giving birth at home. The first modern hospice was founded in 1967, in London, by Cicely Saunders, who was both a doctor and a social worker: she wanted to offer homelike care that aimed to provide comfort and serenity rather than to prolong life. Two years later, Elisabeth Kübler-Ross’s book On Death and Dying (1969, 1997) focussed public attention on the idea of the “good death.” The first American hospice opened in 1974. In those days, hospices were small nonprofits staffed mostly by volunteers; but in the mid-nineteen-eighties Medicare began to cover hospice, and now roughly twice as many people in America die in hospice as die in hospital. Oddly, Medicare still requires that volunteers provide five per cent of a hospice’s staff hours, even though some hospices now are large businesses that are very profitable indeed. (MJHS, where Heather works, is a not-for-profit.)
Hospice believes in caring not only for the patient but also for the family, and tries to address psychological and spiritual needs as well as physical ones, providing social workers and bereavement counsellors, music therapists and chaplains, who work together as a team and consult one another frequently. Nonetheless, patients tend to resist hospice, because it sounds like a death sentence, and it is: entering hospice means giving up on curative treatments, and you qualify only if your doctor believes that you have less than six months to live.
Carmela’s house stood on a quiet street in Bergen Beach, across Mill Basin from Floyd Bennett Field. Her front door opened onto a small hallway, to the left of which was a darkened living room, furnished with carved, gilded chairs and paintings of Jesus. Her husband built the house in 1972, but he died some time ago, and now Carmela lived there by herself. That morning, she had pulled her hair back in a white satin headband, and she was wearing a baby-blue fleece bathrobe and bedroom slippers. She led Heather past a large cage with two small birds hopping about in it, into the kitchen.
“I get dizzy,” she said. “I don’t know if it’s because of my pressure.”
“But your pressure has been O.K.,” Heather said. She put her bag down on the kitchen floor and sat at the table. “What time do you get dizzy? Before or after your medication?”
“Before.”
“O.K., so it isn’t that.”
“I’m always diagnosing myself,” Carmela told her. “I missed my calling. I wanted to be a nurse, but my mother said no.”
“And those were the days when you did what your mother told you.”
“Oh, yes. But I drew the line at the man she wanted for me.”
“Good idea!”
“Well, maybe he would’ve been better than the one I picked. Mine was crazy.”
Heather laughed. “But he built you this beautiful house.”
“Yeah, and he was a plumber, he did all the pipes.”
Carmela’s parents came to Brooklyn from Sicily in the nineteen-twenties and opened a candy store on Henry Street in Carroll Gardens. At some point, they moved to Bergen Beach and opened a boarding house. They rented rooms to performers who worked in the amusement park in Coney Island. Back then, there was nothing around, Carmela said—only the big house surrounded by grass with the beach behind. All the roads were still dirt. Outside the house was a field of weeds, twelve feet high.
“My mother was very shrewd,” Carmela told Heather. “Every bit of money she got, she bought bits of property. Her English was bad, but she had a good head on her shoulders. A property guy would come by the house and ask, ‘How much do you want for a property?’ ‘Two thousand.’ ‘That’s too much.’ ‘You don’t want it? Don’t buy it.’ Next day, he’d come back, ‘How much?’ ‘Twenty-five hundred. Tomorrow it’ll be three thousand.’ My mother always picked up every penny, and I still do. They were in candy, it was a penny business, so I have great respect for the penny.”
Heather dug in her bag and produced a thermometer and a blood-pressure gauge.
“I’ve lived through a lot,” Carmela said. “I don’t care how many books you read, experience is the best teacher.”
“That’s true.”
Heather stuck the thermometer in Carmela’s mouth and bound the gauge around her arm.
“Pretty good, 140 over 70.”
“You gotta have a sense of humor, you really do,” Carmela said. “I wish I could bottle mine, I’d be rich.”
Carmela was dying of cancer. She also had a hernia from lifting heavy things during Hurricane Sandy. She knew she shouldn’t have lifted them, but what was she supposed to do when there was three feet of water in the house and she by herself? She had a small white dog that kept her company, but she couldn’t pick him up anymore. Heather took out her stethoscope and listened to Carmela’s chest, then to her back, then to her belly.
Carmela thought that what she really should have been was an inventor, but time and time again other people had thought of the same ideas. Years ago, she had dreamed of a house made of glass, and then someone else built one. She dreamed of disposable diapers, but somebody else made them. She dreamed of patterned sheets.
“I wanted to sleep on a bed of roses!” she said.
Facing Carmela’s actual bed was what she called her Jesus wall, on which hung seven pictures of Jesus, three statues, one Mary, two crucifixes, a Last Supper, and a Pietà.
“I’ve seen Jesus twice,” Carmela told Heather. “My last surgery, when I was coming out of the anesthetic, we were face to face. He had his red robe on and he was holding both my hands. I don’t remember what he said to me, but then a nurse said, Wake up, and I said, No! I was talking to Jesus! I saw him another time in my bedroom doorway. These miraculous things happen to me. My faith is very strong.”
“How do you pray about your cancer?” Heather asked. Heather is a Christian, but she’s careful not to talk about her beliefs unless a patient asks her or it’s obvious that the patient is a Christian, too.
“Oh, I talk a lot, I never stop,” Carmela said. “He probably says, Stop babbling. But He’s been in my heart all my life, and I’ve walked away from many bad things. I lost my two babies, my girls. I said to God, I don’t feel like I lost anybody—I gave you two angels. I never feel alone. One time, I saw God in the clouds, I wish I had a camera—face, beard, everything.”
Heather had been there for an hour and a quarter; it was time to go.
“Love you!” Carmela said.
“Love you, too.”
Mrs. Sejdaras was sitting up in a hospital bed that was pushed up against her regular bed on one side and, on the other, an IV pole and packages of medical supplies, which were crowded into a small space between the bed and a closet. The detritus of death is not beautiful: the wipes, the pill organizers and the medications, the Kleenex boxes, the disposable bed pads, the IV poles and the heat-therapy patches, the catheters and colostomy bags, the oxygen tanks and commodes, the bottles of Ensure liquid meal replacement, the bandages, the sterile gloves, the discarded packaging and used tissues in the wastebasket. Mrs. Sejdaras’s bed was covered with a quilt printed with roses. On the wall facing the bed hung a clock, ticking loudly.
Mrs. Sejdaras’s hair was gray and short, and she wore little hoops in her ears. She had emigrated some years before from Korçë, a city in southeastern Albania. Now she lived in Bensonhurst, where there were other Albanians, along with Italians and Russians. She spoke some English, but today she felt too tired to summon it, so her daughter, who was in her twenties, came in to translate.
“She feels like there are two of her,” the daughter said. “She says it’s the medication.”
“So sometimes you feel one way, sometimes another?” Heather asked.
“No. She feels like she is two different people.”
Mrs. Sejdaras hated being confused, so she avoided taking pain medication until her pain grew unbearable. When she wasn’t confused, she was depressed.
Next door, in the small living room, several members of her family were sitting on a sectional sofa, eating lunch on their laps. Mrs. Sejdaras used to spend time in the living room, but these days she rarely left her bed. It was too tiring to walk. On the TV in the living room was a Balkan news program that displayed the time and weather in Pristina, Skopje, and Ulcinj, but Mrs. Sejdaras found television boring.
Heather sat on the bed and took Mrs. Sejdaras’s temperature and felt her pulse. She moved slowly about the room, back and forth between the bed and her bag. She shone a small flashlight into Mrs. Sejdaras’s mouth to check for thrush.
“I’m not sure I’m going to see you again,” Mrs. Sejdaras said to Heather.
“Everybody gets sick,” the daughter scolded. “You will soon feel better.”
“The doctor told me one more month.”
“But he doesn’t know that for sure,” Heather said.
“The doctor told her ‘months,’ ” the daughter said.
“There you go,” Heather said. “He said months, not a month. Don’t dwell on the time, dwell on your family, what you have here.”
“Why did the doctor say that?” the daughter said angrily. “I swear to God, I hate doctors. In our country, a doctor would not say that.”
One of the reasons Mrs. Sejdaras was so tired during the day was that she wasn’t sleeping at night. She suffered from nightmares, and then she woke in the early hours of the morning and stayed awake for hours, terrified of what lay ahead of her. Each night, she feared that she might die tomorrow. She took Xanax to relieve her anxiety, but it didn’t help much. Her family discouraged her from talking about any of this, because they believed it would make her feel worse. Heather had tried to persuade them that talking might be helpful, but without success.
“Would you like a visit from the chaplain?” Heather asked.
Mrs. Sejdaras smiled. “I have no patience for that.”
Heather sat down next to Mrs. Sejdaras on the bed and held her hand. They talked about the morphine she was using for pain. If the drug made her groggy and disoriented, then maybe Heather should reduce the dose that Mrs. Sejdaras got when she pressed the pain button. Maybe taking Ritalin would give her more energy during the day to spend time with her family. Heather called the hospice doctor and requested a prescription.
A cat padded in from the living room, jumped onto the bed, and paced along the top of the headboard. Heather got up to go. Mrs. Sejdaras wrapped her arms around Heather’s neck, and Heather kissed her goodbye.
Heather sat down next to Mrs. Sejdaras on the bed and held her hand. They talked about the morphine she was using for pain. If the drug made her groggy and disoriented, then maybe Heather should reduce the dose that Mrs. Sejdaras got when she pressed the pain button. Maybe taking Ritalin would give her more energy during the day to spend time with her family. Heather called the hospice doctor and requested a prescription.
A cat padded in from the living room, jumped onto the bed, and paced along the top of the headboard. Heather got up to go. Mrs. Sejdaras wrapped her arms around Heather’s neck, and Heather kissed her goodbye.
Whenever Heather entered a patient’s home for the first time, she knew that she was walking into a long, long, complicated story that she understood nothing about, a story that was just then reaching its final crisis. She was extra alert on those first visits, extra careful, trying to figure out what was going on—the conflicts and rivalries between members of the family, tension over who wasn’t doing enough, who was doing too much, unresolved bitterness, and nearly always grief and anxiety and fretting about how to take care of the patient and what to do.
Sometimes relatives would tell her, Don’t ever say “cancer,” don’t ever say “hospice,” and she would respect that. Some people believed that if you told a patient he was dying then he would become depressed and die sooner. She thought it was usually better for families to be open about the dying, but if that was not their way it was not for her to force her way upon them. Once, she had a patient from Eastern Europe who was in his late fifties or early sixties, and his family had told her not to mention cancer, because the man didn’t know his diagnosis. The hospice doctor came for a visit, and she had told him of the request, but he must have forgotten, because he mentioned cancer very casually, and Heather saw the man’s countenance change completely—he looked devastated and dazed, like a lost soul, she thought. No one had prepared him for his death sentence; he never recovered from the shock and died soon after.
Sometimes the adult children of a patient felt angry or guilty that they couldn’t prevent their parent from dying, and so they denied that the whole thing was happening. Or else they harangued Heather to get every last bit of help that hospice entitled them to, and then more than that—extra hours, extra supplies, more IV fluid—maybe as a way of expiating guilt or proving love, or maybe just because they were that kind of aggressive person.
Sometimes a patient’s child would attack Heather for the opposite reason—for giving too much medication, or for leaving dangerous drugs in the house. Some people—including some doctors and nurses—feared that opioids like morphine caused trouble breathing and hastened death. Hospice and palliative-care doctors had been accused of euthanasia. And it was true that opioids taken on the street killed people all the time. Many studies had found that careful use of morphine for pain only very rarely slowed breathing, in part because pain itself was a powerful respiratory stimulus; morphine was more likely to prolong life than to shorten it, because it reduced the patient’s distress. But suspicions persisted.
Sometimes there was no calming a relative down. The daughter of one of Heather’s patients had decided that Albanians were untrustworthy. When an Albanian aide came through the door, the daughter jumped up from her chair and shouted, No Albanians! No Albanians!, and Heather stood there wondering whether, with the strain of everything, the daughter had simply lost her mind.
Sometimes the adult child—more often a daughter—was so entangled in her parent’s misery that it was as though Heather had two patients rather than one. If the mother was anxious or angry about something, the daughter would become even more so, and the situation would escalate. The daughter might have left behind the other parts of her life and become isolated in her total focus on her dying parent. It was people such as these whom Heather would mention to the social worker on her team as at risk for a particularly protracted and difficult bereavement.
Sometimes a patient wanted to talk to her about his life because it was easier to talk with a stranger, or because she wasn’t a therapist, or just because she was there. Other patients didn’t want to talk about the past. The Holocaust survivors she had nursed usually didn’t want to talk about it.
When a patient was tormented and having a difficult time dying, or was hanging on despite no longer eating or drinking, Heather would ask, Is there someone you need to see? If a patient was preoccupied with someone he was resolved never to forgive, Heather might say that this unforgiveness was like bondage, and that if he forgave the person who had injured him that person would no longer be his jailer. Heather believed that suffering was part of life, and sometimes when a patient was very disturbed she thought that maybe he needed to understand whatever harrowing memory he was living through again. At other times, she felt that her job was to reduce pain of all sorts, so she increased the patient’s medication until the visions went away. Usually, though, she wasn’t there when a patient cried out, because the worst visions came at night: memories of terrible things that had been done to the patient, or terrible things that he himself had done.
Sometimes when a patient’s family didn’t visit, Heather would make inquiries and discover that the patient was a cruel person whose family was avoiding him for good reason. Some such patients wished that they had done things differently, but others had no desire to make things right. One woman said to Heather, I know I’m a wicked person, I’m a mean person, but she made no attempt to make restitution. She had no friends, and her children seldom visited, even though they lived across the street. Some patients died alone and angry—angry with people who had wronged them, angry with God.
Heather believed that God did not create Hell for people, or people for Hell; she believed that Hell was always chosen. People chose to have their reward on earth: they chose money or power over God. “There’s a parable in the Bible about a rich man who while he was alive had all good things,” she says. “The finest of wines or whatever. And there was a beggar who would sit at the table of the rich man and he would get the crumbs. They both died, and the poor man, Lazarus—who had a name by the way, Lazarus; the rich man was just the rich man—Lazarus was taken to Heaven, to the bosom of Abraham, and the rich man ended up in Hell. From Hell, the rich man looks up and he sees Lazarus in the bosom of Abraham, and he says, Abraham, can you send Lazarus so he can put something wet, just to assuage the thirst that I’m feeling. And Abraham says no. There’s a great chasm that cannot be passed once that death happens; there’s no more travelling back and forth.”
Heather grew up in Jamaica, the eighth of nine children. Her mother and father met in a soda-and-beer factory where they both worked. Her father didn’t live with her mother, but he visited most days and supported the children financially. “I think my mother had a broken heart,” Heather says. “I think she loved my dad very much. They were going to be married, but it didn’t happen.” Later, Heather’s mother worked as a seamstress, and later still she moved to Brooklyn to work as a nanny, and her employers sponsored her for a green card. After she was settled, her children moved to Brooklyn one by one.
When Heather was eleven years old, her eldest brother died in a car accident. When she was twenty, another of her brothers died, by drowning. A nephew, her eldest sister’s son, drowned when he was about fourteen. Another nephew, her brother’s son, died in a car accident. Some years ago, her niece drowned in a lake, at the age of eleven. Heather’s family never talked about how many deaths there had been among them, however, and it did not occur to Heather until quite recently that these deaths might have something to do with her choice of work.
One memory from her youth has stayed very vivid in her mind. She was in high school in Jamaica, walking to a stadium to practice with her netball team, when she saw a mother carrying a baby over her shoulder, and as Heather got closer she saw from its eyes that the baby was dead. The mother was crying as she walked, but, from the way she was carrying the baby, it seemed to Heather that she didn’t know it had died; she couldn’t see its face. Heather went up to her and said, Miss, what happened to your baby, and she steered the mother to the police station and stayed with her until a policeman came. She didn’t feel afraid of or repelled by the dead baby but sensed that the mother needed someone to walk with her until she reached a place where someone else would take over and know what to do.
Heather came to Brooklyn after high school, when she was nineteen, more than thirty years ago. She had planned to go to college to study English literature and become a teacher—she loved poetry, she loved T. S. Eliot, she loved C. S. Lewis—but when she prayed about this she got a sense that God was telling her to go into nursing instead. She was reading the Bible, 1 Thessalonians, and came across the verse “But we were gentle among you, even as a nurse cherisheth her children.” She said to God, Nursing? Lord, I never really thought of nursing. But she discovered that it suited her. Normally, a graduating nurse went into medical-surgical work—that was where the prestige, the difficulty, and the excitement were—but she went instead into home care. She wanted to care for her patients in a personal way, rather than racing from one task to another, one limb to the next—inserting an IV here, drawing blood there, scarcely noticing whose vein she was puncturing or whose arm she was holding.
After a few years working as a visiting nurse, she felt a call to be a missionary abroad. She moved to California and enrolled in Fuller Theological Seminary, in Pasadena. There she met and married her husband, a white man from Kansas, and together they tried to become part of a mission. But they didn’t find a placement, and all the while they were trying to make it work Heather kept dreaming that she was at her wedding but something was missing, or that she was getting married but had no shoes, and she began to get the sense that God didn’t want her to go on a mission abroad after all. She was disappointed, but she thought, God’s no is as good as his yes; if missionary work was not for her, then surely there would be something else. She and her husband moved to Brooklyn and started working as pastors at a small church in East Flatbush. Her husband became the principal of a school attached to the church; Heather began teaching Latin there on Friday mornings.
Heather felt that her work was a kind of therapy, but she had never wanted to be a talk therapist: she wanted to care for the whole person. She knew some people believed that bodies didn’t matter, that only the soul counted, but she believed that God had created bodies for a reason and that they mattered a lot. She wanted to dress a wound and see it heal—even though much of the time in hospice there was no healing. She wanted to make a patient more comfortable for a few hours, or at least not hurt him when she put in a needle, and sometimes a patient would thank her for being so gentle and tell her that she had a good touch. She understood now that touching itself was important, whether it healed or not; she had not realized this before she became a nurse.
“I didn’t grow up in a family that was all touchy-feely,” she says. “In the Caribbean, there tends to be that—I’m not stereotyping, but when you talk to other people from the Caribbean, especially after you reach a certain age, the natural thing is not to have your mom or your dad just hug you. And yet we know their love for us. The love is not expressed in touch; it’s expressed in, I’m cooking your dinner, I’m washing your clothes, I’m doing all of these things for you.
“One time when my mother was dying, I got in the bed with her. It was a hospital bed. I got in the bed, just to get a sense of hugging. I was seeking for a sense of connection. Physical connection with my mother. But you know, when I went in bed with my mom, I didn’t feel that returning sense of, you know—
“I’m sure when we were younger children you would run and get hugs. But I think maybe as we got older there’s self-consciousness. But I can’t say that I remember. I can’t honestly say that I remember cozy, in-your-lap hugging. Do you know how my mom expressed her love? If she’d go to a supermarket, she would bring back little treats for us. I never doubted her love. But that sense of being enveloped in a warm embrace, I don’t—you know, I don’t have a great memory. I should ask my sister.”
Mary lived in a small two-story white house near Kings Highway in Marine Park with her daughter, Barbara, Barbara’s husband, and two dogs. Previously, Mary had slept upstairs, but then she developed arthritis and heart problems and dementia and she couldn’t make it up the stairs anymore, so Barbara got her a hospital bed and installed it in the living room. The living-room walls were pale blue; against one wall, there was a sofa covered in a torn quilt, where the dogs lay. Against another wall, a radiator cover was crowded with statues of saints and vases of artificial flowers, and there was a display cabinet set out with china plates and cups, decorative glass, and china animals.
Mary rarely spoke now, but she could cry out in distress. At night, she sometimes threw herself against the railings of her bed, and the morning after she would be black and blue.
“Hello, Mary!” Heather said from the side of the bed. “How are you feeling?” She touched Mary’s hand in greeting.
“How’s her intake?” Heather asked Barbara. “Did she eat today?”
“Three spoons.”
“That’s all?”
“And then it spilled out again.”
“How about yesterday?”
“Yesterday she was good in the morning and afternoon, but in the evening she was sleeping so soundly.”
“Without medication?”
“Without anything. She just wouldn’t wake up. I put the oxygen, I thought maybe that would help, but she wasn’t even trying to pull the tube out of her nose, you know?”
“Ah,” said Heather sadly. “She wasn’t fighting anymore.”
Barbara used to work on Wall Street, in a corporation’s library. Now that her mother was sick, though, she rarely left the house. Heather had tried several times to persuade her to accept help for at least a few hours a week, which came free with hospice, but Barbara refused. She felt that her place was with her mother. She didn’t want some stranger taking care of her.
“My mother was good to me,” Barbara said. “I was diabetic from when I was four years old, and she took care of me. We were like Tonto and the Lone Ranger.”
Mary grew up in the Village during the Depression, one of nine children of immigrants from southern Italy. Her father was an alcoholic who didn’t work; her mother worked as a janitor and washed diapers for extra money, but then in her forties she had a stroke. When Mary was sixteen, she started working in a factory that made shoulder pads, and during the war she worked in an airplane-parts plant. Barbara’s father worked in the shipyards in Red Hook.
“Oh, my word, she has a lot of stool,” Heather said, examining Mary. “I have to take it out.”
“Oh, boy, she’s gonna hurt.”
“Mary! I have to take out some stool, all right? I’m sorry. I’m so sorry.”
Heather pulled on a pair of rubber gloves. Stool removal was a fairly regular part of her work, and she didn’t mind it. It brought the patient such relief that it was actually quite gratifying to do. And it was not the most distasteful of her tasks. A fungating wound could smell far worse than stool. Sometimes the stink of a wound was so foul that she had to excuse herself and walk away so the patient or the family wouldn’t see her gagging.
Mary rattled the bars on her bed, but she didn’t seem upset.
“She’s not yelling!” Barbara observed cheerfully.
“She’s just so weak right now.”
Afterward, Heather came back from washing her hands.
“Are you O.K.?” she asked Mary. “A little bit sore?”
Mary gave the A-O.K. signal with her hand, and rattled her bars again.
“Oh, good.”
Patients often asked Heather how much time they had left. She tended not to answer this question right away. She would ask them for their own sense of this, and she would deduce how direct an answer they were ready for. By the time patients entered hospice, they knew the battle was pretty much up, but often they were conflicted about it. They weren’t ready to die, they still wanted to fight, but they knew they couldn’t take another round of chemo, or radiation, or whatever the treatment was. They were starting out into unfamiliar and hostile territory, in which things that had once been ordinary became fraught. Some patients were afraid to walk, lest they fall; others were afraid to eat, because they worried that their body was breaking down and would not be able to cope with the food. Some fought sleep because they were afraid they might never wake up again, and they were right—they might not. Family members reported to Heather that a patient would fall asleep and then five minutes later jerk violently awake, in terror.
Of course, Heather didn’t know how long a patient had to live; she could only guess. Toward the end, there were signs. A person became lethargic and began to lose interest in food. Families often found it extremely distressing when a patient stopped wanting to eat. Sometimes a patient would say, Oh, I feel like eating lobster! and the family, thrilled by this expression of desire, would rush out to get lobster, but then the patient would take only one bite, or wouldn’t want it at all, he would smell it and feel nauseous and push it away. If a patient became unable to swallow, he could decide to have a stomach tube put in, but most patients didn’t want that. They didn’t need food anymore.
When a patient could no longer keep food down, Heather might put him on an IV to give him fluids, but after a while even that did more harm than good. If the patient wasn’t taking in any more protein, eventually the fluid stopped being absorbed and began to leach out under the skin. But even though this caused swelling, sometimes she would continue it for a short time, because to cease even the fluids might seem too dreadful a step if the patient or his family wasn’t ready to finally let go.
Heather thought that religious people for the most part were more accepting of death than others. Then again, Christians sometimes felt, guiltily, that they ought to endure their suffering without complaint, or even embrace it. One Catholic woman said to Heather, After all that Christ went through, the persecution and the Crucifixion, why can’t I cope with this cancer? Why can’t I love my suffering if it was given to me by God? Heather told the woman it was OK not to love her suffering, but she didn’t convince her.
As the end approached, patients sometimes fell into an agitated delirium in which they saw people from their past appear in front of them as they lay in bed, often people who had died years before. This happened more often than Heather had expected—to about a third of her patients. The spectres appeared sometimes sitting in a chair by the bed, sometimes standing near the door. Often, a dying patient saw his mother or his father in the room, waiting. Sometimes these spectres were welcome: it seemed to the patient as though someone he loved who had gone on before had come back to accompany him to a life after. But other times the spectres were terrifying. Sometimes a patient believed that someone was running after him, out to get him; sometimes he was haunted by someone he had hurt long ago.
When death drew closer, a patient usually began to withdraw, not wanting to see people, and talking less if someone came. He began to sleep more. There was a kind of quieting, a kind of drawing in, as if he needed time to prepare. He might open his eyes for a minute and smile, but then he closed them and returned to wherever he had been. Hearing was the last sense to go. The patient might seem to be asleep or far away, but still he might hear what his family said around him. People tended to whisper around a dying person, so Heather might say to them, Don’t whisper! Talk, play music, he can still hear you.
When death is imminent, the breathing changes, and discoloration begins. The skin under the nails starts to get cyanotic, to turn blue. The legs grow dusky and cool. When Heather sees these signs, she calls family members who aren’t there and tells them, If you want to be here, this is the time. But she has seen, many times, that the patient seems to choose whom he wants there at the moment of death. Sometimes he waits for someone to arrive; but just as often he waits for someone to leave. Heather would see a husband or a wife or a child sit by the bedside day after day, hour after hour, and then he or she would say to the patient, I’m just running out to the market for ten minutes to get lunch, or I’m just going to take a shower, and that would be the time the patient would go. This happened over and over again. She wasn’t sure why. Maybe the dying person wanted to spare his spouse or his child the grief, or maybe it was harder to let go with that particular person around. Maybe dying was just easier to do alone.
If Heather was there when the end was very near, she would ask if the family wanted to gather together in the room. Then she would hang back, leaving the family to say goodbye. If the family were Christian, and if they had talked about that before, she might ask if they wanted to pray together. If the family were not Christian, she didn’t want to impose her beliefs, so she prayed silently in her head: God, here is this person, have mercy on him.
The patient’s breathing changes. He might stop breathing altogether for half a minute or so, and then start again. Then he stops again, but for longer. Then starts again, but shallower. This means that death is very close. For a person who hasn’t seen dying before, this strange, unpredictable breathing can be bewildering, a horror: because of the irregular intervals between the breaths, there is no knowing until a while afterward which breath is the last. Just before it happens, there is a staring. The eyes don’t focus anymore. The person is not there behind the eyes. Even so, Heather may need to step forward, after waiting some time, because the family may not know that the patient is dead.
People react differently to a death. Some cry, some are calm. Some are frightened to be left alone with a body. Some fear that the body may come back to life. Wives sometimes throw themselves on the body, weeping and grasping it, especially when the couple have been married forty, fifty, sixty years. “The Bible says, And two shall become one,” Heather says. “It’s a wrenching that happens, a tearing, like a garment that’s being pulled apart.” But fairly often a former spouse is taking care of the patient, because there is no one else to do it, and that person may not feel too much.
When the time seems right, Heather begins the postmortem rituals. She shines a flashlight into the patient’s eyes to see that the pupils no longer constrict, and, if they do not, she closes the eyelids. She checks the pulse at the wrist and neck. She listens to the chest, and looks at the hands to see if they have changed color. She asks the family if there are people they need to call—other relatives, a priest, the funeral home—and if they aren’t ready to do it she offers to do it for them. She phones the hospice doctor to confirm the time of death, and the doctor writes up the death certificate. It is illegal to transfer medications from one patient to another, so she goes to the patient’s fridge and retrieves any leftover drugs and destroys them, with bleach, or coffee, or dirt.
As Heather was leaving Mary and Barbara’s house, she received a message that George, another patient of hers, who lived nearby, had died. She drove over right away. As she parked, she saw a priest knocking at the front door. George had died ten minutes earlier, and his wife, Anna, had immediately called the church and hospice. Two clergymen from the church had also come by, to keep Anna company and pray with her.
George was lying on a hospital bed in the living room. His mouth was open; he had no teeth. In a formal photograph of George and Anna that hung over the bed—he wearing a dark suit, she a white one—George was a big, robust man, but in his illness he had become shrunken and thin; the pale skin of his face hung slackly over his cheekbones.
The priest stood over George’s body and prayed aloud. “Go forth, Christian soul, from this world,” he said. “In the name of God the Almighty, the Father who created you; in the name of Jesus Christ, the Son of the living God, who suffered for you; in the name of the Holy Spirit who was poured out upon you, go forth, faithful Christian. May you live in peace this day. May your home be with God and Zion, with Mary, the Virgin Mother of God, with Joseph, all the angels, and all the saints. I commend you, George, to Almighty God, and entrust you to your Creator. May you return to Him, who formed you from the dust of the earth. May Holy Mary, the angels, St. Columba, and all the saints come to meet you as you go forth from this life. May Christ who was crucified for you bring you freedom and peace. May He forgive all your sins, and set you among those He has chosen. May you, George, see your Redeemer face to face, and enjoy the vision of the one God forever. We ask this through Christ our Lord. Amen.”
“Amen,” echoed Anna and Heather and the two clergymen and George’s home health aide.
“Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death, Amen,” the priest said. “In the name of the Father, and of the Son, and of the Holy Spirit.”
For a minute, it was quiet in the room. Anna stood holding on to the bed rails and cried silently. Heather went to her and stroked her back. Anna stopped crying and turned to Heather.
“I can’t believe I wasn’t in the bathroom when it happened,” she said.
Heather laughed. This had been one of Anna’s persistent worries in the days leading up to George’s death—that she’d be doing something dumb like going to the bathroom when he died, and she’d miss the moment.
“How are you doing?” Heather said to her. “Why don’t you sit down. Do you want something to drink?”
Anna sat down next to the priest on the sofa, and he put his arm around her. The priest had been in the parish only sixteen days, so Anna didn’t really know him, but he was her priest and he comforted her.
“A lot of people are going to miss George,” the priest said. “I know that. I’ve been hearing about the both of you since I got here—how faithful you were to the church, and to God.”
Anna and George’s daughter arrived, and Heather hugged her. The daughter went over to her father’s body and stood looking at it for a moment; then she went to sit next to her mother on the sofa. The priest stood up to leave.
“Anna, God bless you,” he said. “I have to go, but anything you need, let me know.”
Heather turned to the aide, who had been crying.
“Are you OK?” she asked.
“Yes, I’m OK.”
“Is this the first time you’re seeing someone like this?”
“Oh, no.”
Heather asked the aide in a low voice whether she needed to wash George’s body, because sometimes people soiled themselves when they died, but the aide told her that George was clean. Heather went over to the bed and stood looking at George’s face for a moment. She shone her flashlight into his eyes, then gently closed his eyelids.
Anna went over to the dining-room table, and the two clergymen sat down with her.
“I thought he was going to wait till Monday, because that was our anniversary,” she told them. “But then he lived past Monday. And then I thought he was waiting for my birthday. All this while I was thinking, Another two hours, another four hours, he’s not going to go through the night. The waiting, the anticipation, you know? And then the hospice music people came and played the guitar, and he went off with them playing ‘On Eagle’s Wings.’ ”
“His favorite tune?” one of the men asked.
“Yes! And I didn’t know that hospice at the end would give me twenty-four-hour service.”
“That’s wonderful.”
“Unbelievable! I had no idea. When Heather said I was going to have around-the-clock, it was, like, God, here’s my miracle that I was asking for. People don’t always realize when they have miracles.”
“It’s always in the little things,” the man said.
“You know?” Anna said. “And Maureen! Forget about Maureen. Every time I ran short, Maureen, my niece, she’s a nurse, she’d come running.”
“Why is it that ninety per cent of the nurses are named Maureen?” the man asked.
“I don’t know,” Anna said.
“Or Heather. The other half are Heather.”
Heather went into the kitchen to destroy George’s medication. The daughter and the aide watched her as she hunted for every last package in the fridge and the cupboards.
“You’re not going to make crystal meth, are you?” the daughter asked.
Heather giggled. “No, I’m not.”
“I’m a teacher,” the daughter said. “I know about these things.”
Next to the table in the dining room there was a display cabinet filled with china and religious figurines. A sign on the wall read “MY DOG ISN'T SPOILED, i' JUST WELL TRAINED." There was a framed message from Pope Benedict XVI, blessing Anna and George on the occasion of their fiftieth wedding anniversary, in 2007.
“These people next door had two pianos in their house, and they wanted to give away a piano for nothing,” Anna was saying to the clergymen. “So I went down the list, calling all the priests I know, figuring maybe they needed it in church, this piano. People came, but they said, How am I going to get the piano to where I gotta get it?”
“Yeah, right, that’s it,” one of the men said.
“Then, two weeks ago, Father Apollinaris from Ghana comes, and he sits down and he’s having a plate of spaghetti over here with us and he starts showing pictures—he opened up a school, and every year he comes and shows me these pictures of the kindergarten children.” Over the years, Anna and George had hosted more than four hundred priests from all over the world—from Ghana, Nigeria, India, Lebanon. “So I said, It’s too bad you’re over there, because there’s people next door who’ve got a piano. He said, I could use a piano. I said, How’re you going to bring a piano all the way there?”
“Yeah, what’s he going to do, crate it?”
“He said, I want the piano, I need a piano, if it’s for free. I’m going to call two men in my parish, St. Matthew’s, over there on Eastern Parkway. I said, Wait a minute, when you pick up the piano, where you gonna put it until you go? People are gonna have a fit, you bring a piano in the house. Oh, he said, that escaped my mind. I said, Go call up the freight people in the Bronx, so that’s just what he did. The people next door were so happy because they thought they were never going to get rid of that piano. The piano belonged to his wife who passed away three years ago. Did you read the paper three years ago? The lady who was going to the post office, and on her way to the post office, or coming out of the post office, some driver lost control—”
“Oh, yeah!”
“—and threw her into McDonald’s and killed her. It was this lady next door.”
“That was her! OK.”
“And a year later it winds up that he marries his second cousin, and that lady came with a piano, and this piano belonged to his first wife. So there were too many pianos in the house, and she didn’t want to keep the wife’s piano, she wanted her own piano. So Monday, as bad as it was, I went from crying to laughing when I looked outside and saw all of them trying to get the piano into the van, and there were so many of them I didn’t know how they were going to fit. And the piano went to Africa. And that made me happy, that at least I did something good for somebody today. As bad as it was over here, something good was happening someplace. You know?”
Mostly, Heather didn’t take the deaths of her patients too hard. She couldn’t—she had to learn to control her emotions. But sometimes a death really got to her. There was one woman in her forties who lived with her teen-age daughter and was dying of melanoma. The woman had lived a rough life—she had been a junkie and a prostitute—but she had found AA and found religion and had been trying to lift herself up. She was an unbelievably needy person. When Heather went to see her, the woman wanted to tell her about everything she had gone through in her life, all the struggles and the abuse, and she was always calling Heather on the phone in between visits. Heather found herself wanting to protect and help the woman: she had lived such a miserable life, and she had fought so hard to rise above it, and now she was going to die young and leave her daughter behind. The woman liked to read aloud to Heather from the inspirational books she was given at AA, and sometimes the two of them would hold hands and pray together.
Then one day Heather got a call asking her to go over to the woman’s house right away, and she arrived and found that the woman had gone. She wasn’t dead yet—she died a couple of weeks later—but mentally she was gone: she could no longer talk coherently or understand who Heather was or what she was saying. It was so sudden, so abrupt, and it was immediately clear that Heather would not be able to ease the woman into death as she had wanted and planned to do, and she felt such an acute sense of loss that she realized how much this woman had got under her skin. The teen-age daughter couldn’t take care of her, so the woman was placed in the hospice’s inpatient facility—many hospice organizations offer both inpatient and home care—and Heather wasn’t her nurse anymore. Heather asked the facility to keep her updated on what was going on. And then one Tuesday morning, during her weekly meeting at work, she suddenly noticed that the woman’s name had disappeared from her computer system. Heather realized that she had died, and burst into tears.
Sometimes, particularly when she was assigned to dying children or babies, she asked herself what she was doing in this profession. She no longer had child patients—there were now nurses in her hospice who specialized in children. But she remembered the ones she’d had. She remembered a boy, about seventeen years old, who had a tumor that had started in his mouth and protruded up into his eye, so that the eye had come out of its socket, and then the tumor had spread into his brain. The boy was self-conscious about how ghastly he looked, so he had withdrawn from his friends. His mother, too, was isolated—she had expected her friends to rally around her more than they did. That family belonged to a church like Heather’s, and so she and the boy would talk about God. The boy himself wasn’t angry about dying so young, but Heather found that case very difficult. The boy had a younger brother, and Heather had two young boys herself, and it was just too close.
Heather did not fear her own death. She believed that there was a life after that was better than this one, and she trusted that she would wake up with God, and with those from her family who had died before her. Sometimes she even got excited thinking about what was in store in that future. Meanwhile, she tried to do her best in life, so that when she came before God he would say to her, as she had read in the Bible, Well done, good and faithful servant.
“Remember me?” Heather said as she walked up to Ruth, who was sitting in an armchair in her living room. “I’m Heather, I’m the nurse!”
“Feel good,” Ruth said, in a high, weak voice, and smiled up at her.
Ruth lived in a brick apartment building on Ocean Avenue, in Sheepshead Bay. She was a tiny person, well coiffed. Her white hair was pulled back into a tight bun; she wore a striped cotton dress with a cardigan over her shoulders. Her nails were freshly painted cherry red. On the shelves behind her there were framed family photographs of children and grandchildren, graduations and weddings, decorative plates and glass goblets.
Ruth was a hundred and five, almost a hundred and six. Her husband had died the previous year, at ninety-four, and this had been a shock to everyone because she was supposed to go first. When he died, his and Ruth’s daughter, Pearl, kept protesting, in her grief, “But he’s so young.” Nobody was sure whether Ruth understood that her husband was dead. Pearl had told her, and she had cried, but then she seemed to forget. She still blew kisses to the spot where he used to sit on the sofa.
For months now, Ruth had been inert, almost unwakeable. Heather had come by each week, and Ruth had just sat there. She didn’t speak, she barely ate, she slept all the time. But then quite suddenly, a few days earlier, she had come back to life. It was like a miracle—Heather could hardly believe it.
“I feel good, how about you?” Heather said. “It’s good to see you!”
“I’m ready,” Ruth told her.
“She’s been like this since Monday?” Heather asked Ruth’s home health aide, Indira, in astonishment.
“Yes! She says she wants to get married.” Indira had been with Ruth for ten years, ever since Pearl started feeling nervous about her parents living alone.
“You’re kidding. Wow!”
Ruth grew up on the Lower East Side, the youngest of eight children. She grew up in an Orthodox family, but instead of getting married she worked as a public-school teacher in Bedford Stuyvesant and travelled by herself to South America and the Middle East. Eventually, in her late thirties, she married a younger man and had Pearl. She had always felt blessed in life, and loved by everyone. Pearl did not believe that this had much to do with her longevity, however; she thought her mother just had good genes.
“Who’s going to take the gasoline?” Ruth asked.
“The gasoline? Not me!” Heather said.
“Try,” Ruth urged.
“O.K., I’ll try.”
“Where is it?” Ruth asked.
“I don’t know, Ruth,” Heather said. “Where’s what?”
“I want to hear.”
“What do you want to hear?”
“ ‘Summertime.’ ”
Ruth started to sing. “Summertime, and the living is good,” she sang, in a quavery voice. “So hush, little baby, don’t you cry.”
“Very nice,” Heather exclaimed.
“One of these mornings, you’re going to fly free singing,” Ruth sang. “Then you’ll spread your wings, spread your wings! And you’ll take to the sky.”
“Do you want to try this one?” Indira asked when Ruth finished the song, picking up a book of lyrics and opening it on Ruth’s lap. “It’s your favorite.”
“Old man river, ” Ruth sang. “Body’s aching and shaking with pain. I get weary . . .” she trailed off.
“I’m tired of living,” Indira prompted.
“I’m tired of living,” Ruth sang.
The next line was “And scared of dying,” but Indira skipped that one.
“But he just keeps rolling along,” Indira sang.
“Feel really good,” Ruth said, beaming at Heather and blowing her a kiss.
“That was great!” Heather said.
“Beautiful,” Ruth said.
“Yes, it was beautiful.”
“I want . . .” Ruth began, then murmured something, and got teary suddenly and began to whimper.
“It’s O.K., we’re here,” Heather said. “We’re right here with you.”
“You’re gonna be very happy,” Ruth said to Heather. “Happiness is going to be very beautiful, too.”
“Grandma, here.” Indira gave Ruth a Kit Kat, and Ruth nibbled at it. It was her favorite food.
“Beautiful!” Ruth said to Heather. “You’re happy?”
“I’m happy,” Heather told her. “Yes, I am.” Ω
[Larissa MacFarquhar has been a staff writer at The New Yorker since 1998. Her Profile subjects have included John Ashbery, Barack Obama, Noam Chomsky, Hilary Mantel, Derek Parfit, David Chang, and Aaron Swartz, among many others. She is the author of “Strangers Drowning: Grappling with Impossible Idealism, Drastic Choices, and the Overpowering Urge to Help” (Penguin Press, 2015). Before joining the magazine, she was a senior editor at Lingua Franca and an advisory editor at The Paris Review, and wrote for Artforum, The Nation, The New Republic, the Times Book Review, Slate, and other publications. MacFarquhar received a BA (English) from Harvard University.]
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