Modern death takes many shapes. Arranging a peaceful one poses different challenges in a private home, a nursing home, and a hospital. Nevertheless, most deaths share a few simple commonalities, notably the need for physical comfort, human connection, and pain control. All are easier to provide when death is anticipated. But dying has become so hidden, medically drawn out, and ambiguous that many of us no longer trust our gut sense that it is on its way. Experienced doctors, aides, and hospice nurses tend to be more attuned, but they have learned never to precisely predict the moment of death, and they, too, sometimes miss its harbingers. Only in retrospect did Diana, a former social worker who serves as a paid companion for aging people, recognize the signs shown by one of her favorite clients, a retired engineer named Gordon Lechenger.
Gordon was ninety-six and lived in an apartment in a luxurious assisted living complex in a small town in Minnesota. In the six years that Diana served as his companion and aide, their relationship evolved from an employer-employee transaction to an intimate, reciprocal friendship. Gordon was a widower with two loving daughters and several granddaughters and great-grandchildren, the kind of man who during the winter holidays would ask the staff at his residence what they were buying for their children. He regularly dressed in suits, ties and hats, and Diana remembers him as “very nice-looking, a dapper man, a gentleman. The kind of man who would open doors for you and feel good about it.”
Diana first met him when he was in his mid-eighties, after he injured his shoulder. She was hired by his daughters to help him dress, and to drive him in his big leased car to tour the countryside, to visit art fairs, and to go to an old-line department store, where he’d buy new shirts and hats and schmooze with the staff. Sometimes he’d ask her to Google something—like who invented the fork?—and then talk about it with his fellow residents at dinner.
Gordon could read Diana’s face. If she came to work looking stressed about her own family, he’d say, “Lock the door. I’m turning my collar around,” meaning he was about to play priest. He would hold her hand and look into her eyes, and when she finished unburdening herself, he’d say gently, “This, too, shall pass.”
Over the next decade, a heart attack and repeated hospitalizations and injuries left him weak and fragile. He gradually stopped walking and relied more and more on a wheelchair.
The first sign of his approaching death followed a brief hospitalization for unexplained stomach bleeding. After he stabilized, he went to a skilled nursing home, paid for by Medicare, where he had to share a room. When he learned from his daughters that he had run out of money and could no longer afford to return to his expensive assisted living apartment, Diana saw him change markedly. Previously, he’d thrown himself into physical therapy. This time, he refused to go.
One morning at the nursing home, Diana found him looking out the window at a majestic old oak tree. He told her that the tree “needed to come down” because it was old and had “had a good life.” Sometimes he’d get a faraway look in his eyes and when Diana asked, he’d tell her that he was remembering dancing with his dead wife, Angela. When Diana got ready to leave for a month to care for her sick mother-in-law in Australia, Gordon barely responded—a lack of interest in her affairs that was totally out of character. His withdrawal, his reminiscing about the dead, and his speaking in metaphors about the natural cycle of life and death, were all foreshadowings.
When Diana returned, Gordon was no longer listless and preoccupied with the past. “He looked at me with such brightness and joy,” Diana said. “Never in my life had anybody looked at me that way.”
It was a warm spring day. She took him for a walk in his wheelchair and then to a St. Patrick’s Day party in the activities room. Everything he encountered filled him with joy. Normally reserved and dignified, he happily wore a green cardboard hat decorated with a shamrock, tapped his feet to Irish music, called the crab cakes “delicious,” and laughed at the Irish jokes Diana downloaded from the Internet. This burst of joy, this final spilling-over of life energy, this gratitude for the world, this letting go of restraint, was the harbinger that hospice nurses call “rallying.”
The next morning, Diana found Gordon in bed, trembling. His doctor made a house call, decided that Gordon had a cold, and reassured his daughters that it was safe for the extended family to take their planned Florida vacation.
The next day Diana found Gordon sitting in his armchair, looking ashen. He said with uncharacteristic abruptness, “You are just in time.”
His lower back, he told her, was hurting badly. She called an aide, and together they moved him back to bed. The aide gave him Tylenol. It did nothing for him.
The next four hours were among the most difficult of Diana’s life.
Uncontrolled pain is a common barrier to a peaceful death, currently affecting 61 percent of people in their last year of life. It is most frequently endured when death comes unexpectedly, without the expert pain management usually provided by a hospice. Gordon, who was usually stoic, kept shifting in bed, trying to get comfortable. Diana rearranged his pillows and called nursing staff, but getting medical authorization for a stronger painkiller was agonizingly slow. An hour passed. She sat on the bed and tried to reach under Gordon’s back to rub it. “The dear man attempted to move over to make it easier for me, which he was too weak to do,” she said. “He was such a kind soul.”
In the meantime, Gordon’s roommate, lying behind a curtain in the next bed, and sensing perhaps that death was near, turned on his television, and then turned it up louder. Another hour passed.
A young nurse came in with a big pain pill and handed it to Gordon with a glass of water. After he swallowed it, the young woman set down the glass and quickly walked out. As the television blared behind the curtain, Gordon’s breathing grew ragged. A more experienced nurse came in, asked if Gordon had a do-not-resuscitate order, learned that he did, and said to Diana, “He doesn’t look good. Just hold his hands.” Diana held him. Gordon choked, took two final breaths, and stopped breathing. Diana believes he had waited to die until she returned.
Because so few of us are exposed to dying as a normal life passage, we are both captivated and tyrannized by death. We are either terrified into silence and avoidance, or we flee into a sentimental narrative of the “good death,” a purely spiritual experience where all is forgiven, the heavens open, and the secretions, smells, exhaustion, and messiness disappear. But a death, like a birth, weds the animal to the soulful. Perhaps a more realistic hope for caregivers, and for ourselves when we are dying, is for a “good-enough death,” where we keep the dying as comfortable and pain free as possible, and leave room for the beautiful and the transcendent, which may or may not occur.
The final letting-go is an inexorable physical process, akin to giving birth. Vital organs shut down one after another or all at once, starved of oxygen, nutrients, and energy. Breathing becomes ragged, lips and toes turn blue, awareness turns inward, the dying person stops responding to others, and sinks into a deep, sleep-like coma before taking a few final breaths. This stage, which hospice nurses call “active dying,” usually lasts three to eight days, but sometimes less and sometimes more.
Sometimes dying is gentle all the way to the end, and sometimes not. Moments of fear, agitation, confusion, breathlessness, irritability, anger and pain are normal, and although they can often be soothed medically, dying can be wrenching for the dying, and exhausting and distressing to those who are with them.
Keep your heart open and your expectations low. “I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.”
Even if you find yourself looking after a dying person without hospice or experienced help, you and those who love you can do this. The presence of a single calm person in the room can make a tremendous difference. People have been dying, and sitting by the bedsides of the dying, for millennia. If you are a caregiver, the most important thing to do is to take your cues from the dying person, and imagine what you’d want if you were in that bed. Having a map of what you are likely to encounter may help you to manage your own fears and to understand that what you are seeing, while difficult, is normal.
Dying is not an emergency. You can prepare for it, you can cooperate with it, and you can draw on wells of fortitude and love that you may not know existed within you. Dying people and those who sit with them have borne many difficult things. They’ve climbed mountains, built businesses, nurtured children, and lived through chronic illness, loneliness, marriage, divorce, and bereavement. Now comes the final labor of leaving this earth. At times it will be an ordeal. Much will be out of your control. But expressing your caring is never fruitless, and you may look back with pride on how you helped.
You don’t have to be a saint to die well at home. You do have to have people who love you. John Masterson was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was eight, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Soka Gakkai, a branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese, Nam-myoho-renge-kyo (I honor the impeccable teachings of the Lotus Sutra).
John was fifty-seven and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood-cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another sibling, or John’s oldest daughter Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington medical center for what turned out to be the last time. His kidneys were failing and his bones were so eaten-away by disease that when he sneezed he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. “He took this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’ ” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, “You’re not going to have a choice.”
Anne said she “set an intention” not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John could barely walk. Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had shown her, and drip them into John’s mouth.
One morning Anne’s distraught older brother accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and the things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time knowing that my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning—as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying—as the hospice nurses and those who loved him had done. There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two of John’s Iowa siblings beseeched Anne to call a priest to give John last rites in the Catholic Church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put Anne’s sister on the phone. Yes, the sister acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances, he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘his breathing’s changed.’ ” Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam-myoho-renge-kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said. “It was a profound experience for me. I realized what a good death could be.”
When I first began this book, I expected to enthusiastically recommend hospice at home for everyone. I still think it’s the best option for those who want to die at home and have the money for hired caregiving or a “tribe” to look after them. But after talking to many people who’ve attended difficult hospice deaths, I’ve realized that current gaps in hospice services put a good home death out of reach of many people. As I’ve said, hospice staff don’t provide practical caregiving, and sometimes they’re not available when family members panic, don’t give enough morphine to control pain, or are otherwise overwhelmed.
Some people fall through the cracks because, even though they are dying and could benefit from comfort-focused medical care at home, they don’t have the “right” diagnosis: a disease that moves quickly enough to qualify them for hospice as soon as they need it. Others live in neighborhoods where keeping narcotics at home will expose them to burglary, and where local pharmacies don’t stock certain drugs for the same reason. Many single people don’t have (or have outlived) the deep network of friends or relatives needed to make a long dying at home comfortable. For them, a better alternative may be a residential hospice, a nursing home or an assisted living residence friendly to hospice, or even a hospital.
If you have the resources for a home death, here are some suggestions—gathered from hospice nurses, family caregivers, and volunteers—for preparing yourself.
Plan ahead for the basic needs of the dying and those caring for them. That means food for vigilers and physical comfort for the dying person. (Once active dying begins, people will be too overwhelmed to go shopping.) Next, arrange medical care that supports, rather than detracts from, a peaceful death. This means hospice if you can qualify; home-based palliative care or serious illness management if you can’t; and at the very minimum, prescriptions for the management of pain and anxiety. Once those basics are handled, invite a sense of calm, beauty, and focus into the room. A hospice team can help, but most of these tasks will fall to an intimate circle of friends and relatives.
Just as people in earthquake country put together kits of bottled water, dried food, and candles in anticipation of the next big one, you can create a “death kit” like those used by some hospices. The basic checklist includes a hospital bed, wheelchair, bedside commode, paper towels, dark cotton towels, diapers, and garbage bags. A “bath board,” placed athwart the rim of a tub, can help you rinse or bathe a weak person if they can still be moved. Dying can be smelly, and hospice workers often bring a lavender or eucalyptus spritzer, a bag of charcoal briquettes to place under the bed to absorb odors, or a spray bottle of scentless Febreze, an effective odor-remover.
Friends can stock the kitchen with easy food and takeout menus. Bring in magazines, crossword puzzles, music, and books of poetry or religious texts—they come in handy for the long hours of waiting. Arrange a whiteboard or a notebook for people to leave each other messages.
Post documents detailing end-of-life medical wishes on the refrigerator, and make sure friends, family, and the medical team understand them. This is not something to improvise in the heat of the moment. The most helpful documents, all discussed in detail in Chapter 5, are a do-not-resuscitate order, or DNR; a POLST or MOLST, or Physician or Medical Orders for Life-Sustaining Treatment; and either a metal DNR bracelet from the Medic Alert Foundation or a plastic hospital-type DNR bracelet recognized in your particular state.
Watching someone die can be frightening, and caregivers sometimes panic and call 911. In many states, this can result in a traumatic death, or death in a hospital, because it will bring paramedics who are trained to start resuscitation first and look for paperwork later. (Saving lives—and brains—is their primary duty, and every second counts.) Therefore, make sure you have an agreed-upon alternative to calling 911. If a hospice is involved, its number should be posted by the phone. If a hospice isn’t involved, I still recommend you call one immediately if death seems imminent (the person has stopped eating and drinking, for instance, or become unconscious, or extremities are turning blue) and you confront a situation you don’t know how to handle. Don’t give up, even if you were rejected earlier, or the dying person refused hospice services. (In Oregon, for example, some hospices can admit patients with only a few hours’ notice.) Post the phone number of a primary care doctor or nurse, a physician house call service, or a clearheaded friend, preferably someone experienced with medicine or with dying, who will come over, provide reassurance, wait with you, or guide you on the phone.
Nearly a quarter of us will die in a nursing home or similar facility—often, in a shared room with someone in the next bed. There, the most important unmet need may be for privacy, not only for the vigiling family but for the roommate behind a flimsy curtain who must endure the sights, sounds and smells of death and grief.
If someone you love is dying in a nursing home, ask for a temporary private room. (You may not prevail, but it never hurts to ask.) Or improvise. When Loretta Downs’s mother was dying in a nursing home in Chicago in 2006, Loretta got permission to transform an unused storage room into a sacred, private space, which she decorated with her mother’s possessions. Friends and family came to share their memories and bring food, and other residents dropped in to say goodbye.
Loretta, an experienced hospice volunteer with a professional background in interior design, named the space she’d created the “Chrysalis Room” after the pupa that holds a caterpillar as it is transformed into a butterfly. The room became a permanent and beloved feature of the nursing home and set in motion a cultural shift.
Before the room was arranged, nursing home staff feared death—and the crowded conditions in which it was taking place—and sent most dying residents to the hospital. Only a few died in the nursing home under hospice care, and their families were forced to keep vigil in a room barely big enough to allow one relative to sit comfortably at the bedside. As soon as the resident died, the room would be emptied and the body taken away. The person would silently disappear from the community they’d long called home, as if they had never lived.
After the Chrysalis room opened, more residents enrolled in hospice care prior to death, and more died in the place that had become their “home,” rather than in a hospital. Other residents became more likely to participate in the final goodbyes, and some became less fearful of their own deaths. Downs has since helped create similar Chrysalis rooms in nursing homes in Wyoming, Indiana, and the Chicago suburbs. The ideal spaces, she says, are quiet, with natural light, a view of nature, floor lamps, an adjustable bed, a recliner, soft music, and folding chairs. But with a little imagination, almost any private space can be made more humane than a shared room. For more information on how to improvise or build a Chrysalis room, consult Downs’s endoflifeinspirations.com.
Keep the dying person clean and comfortable. Turn them from side to side every two to four hours to prevent bedsores, and give adequate pain medication beforehand. This is difficult work: just do your best. Hospice nurse Jerry Soucy recommends taking your cues from the dying person: “If someone looks comfortable, they probably are, and whatever you’re doing seems to be working so keep doing it,” he said. “If someone looks uncomfortable, they probably are, and whatever you’re doing doesn’t seem to be working, so don’t keep doing it.”
Remember, you are watching a natural process: stopping eating and drinking is an expected part of the body shutting down, and it reduces pain and distress. Instead of coaxing or forcing food and drink, offer lip balm, Vaseline, ice chips, or a sponge soaked in water to moisten the mouth and lips.
You can relieve “air hunger” or breathlessness by opening a window, running a humidifier, or directing a small fan toward the dying person. Hospice may provide supplementary oxygen, delivered through a tube placed over the nose, but the tube can be irritating and the machine makes noise. Let comfort be your guide. If the dying person removes the tube, let it be. Worry not. Giving oxygen is unlikely to prolong dying and stopping it is unlikely to hasten it. The antianxiety drug Ativan (lorazepam), and morphine, are usually given to soothe breathlessness.
If pain and agitation don’t respond, a hospice team may suggest terminal or total sedation, which creates a state of continuous unconsciousness until death comes. This sometimes requires moving the patient to a residential hospice or to a hospital, if family members are overwhelmed.
There is no right way to die. Dying people may be angry or irritable, afraid or worried, sad or accepting, or any of the above at different times. They may fear losing control, being a burden, looking undignified, or running out of money. They may want to talk about how their favorite sports teams are doing or harshly reject any talk of worldly things. They may say “I’m dying,” or insist that they’re going to “beat this disease” until their last breath. Some need to let go of secrets, such as having given up a child for adoption, or having been the victim or perpetrator of abuse. Some may need to hear that you will be okay without them, or that you will take care of things, or people, after they’re gone. Some take their last breaths only when relatives step out of the room. So take a break once in a while.
Hearing is said to be the last sense to go. Hospice workers suggest you assume that dying people can hear everything you’re saying, even after they stop responding. You may want to recall meaningful times you’ve had together, or qualities in them that you love. You may need to ask for forgiveness, or to thank them. Or you may feel most comfortable holding a hand in silence.
The ceremonies of death are for everyone present, not only the dying. Consider setting up an informal altar or table with flowers, photographs, music and candles, and, if you wish, religious images. Bring in beauty. Consider the senses: sight, touch, smell, and sound. In some areas, local branches of The Threshold Choir, a national organization, will send a small group of volunteers to sing at the bedside of any gravely ill person who asks. On the other hand, your friend may prefer listening to Willie Nelson singing “On the Road Again” through headphones. Trust the lifetime tastes of the dying person.
Soothing music, gentle touch, massaging with oil, and reading poetry or reassuring religious texts such as the 23rd Psalm (The Lord Is My Shepherd) can also help as long as they fit the dying person’s tastes and beliefs. Both dying people and their attendants sometimes find the Buddhist “Metta” (Lovingkindness) prayer calming:
May you be peaceful and at ease
May you be filled with lovingkindness
May you be safe, and free from fear
May you be happy.
When dying is hours away, people often pluck at sheets or blankets, reach for the light, or seem to be climbing an imaginary ladder. Their feet, fingernail beds, and lips look mottled and feel cool to the touch. Their blood pressure falls, if it’s being taken, which it need not be. Their pulses may be fast, irregular, or slow.
The dying often curl into a fetal position or lie unmoving, mouth open. They lose control of their bowels and bladders. Sometimes they have convulsions and display an agitated moving-around in bed. The “death rattle” may be heard as they lose the ability to swallow and secretions build up in the throat, creating a gurgle similar to that of a leaky swimmer’s snorkel. Hospice workers say it sounds worse to observers than it feels, and the secretions can be dried with eye drops containing atropine, squirted under the tongue.
Finally, most dying people stop speaking, lose consciousness, seem to be sleeping, and drift off. Breathing becomes ragged, shallow, and uneven, with long pauses between breaths, until it stops.
After death, take at least two hours before involving the world. If an expected death takes place without hospice, you might choose to first take the dog for a walk, and to say your goodbyes in ways that have meaning for you.
Make a note of the time of death, but only after you complete your goodbyes do I suggest that you notify authorities. To confirm that death has indeed taken place, you can check for a heartbeat with a stethoscope; hold a mirror up to the mouth to make sure breath does not fog it; or shine a light into the pupils of the eye to make sure they don’t contract. A doctor or nurse must, by law, come to the house that day to sign the death certificate. If hospice is involved, one of its nurses can do this.
If no medical person can be found, call the business line (not the emergency line) of the county medical examiner or coroner. Make sure you tell everyone you speak with that the person had a terminal illness and has been dead for hours, and that this was an “expected death.” This important term of art will minimize the chances of your home, tragic and excessive as it sounds, being regarded as a potential crime scene. Once again, try to avoid calling 911. Doing so is likely to set in motion a chain of circumstances that work against a peaceful goodbye, sometimes including forced attempts at resuscitation even if more than an hour has passed since your loved one’s final breath.
Most people don’t want to die in a hospital, but many do, thanks to bad luck, a sudden catastrophic turn for the worse, or a lack of realism, planning, or practical support. No matter how unexpected the situation, people do find ways to humanize hospital deaths and create at least some sense of a rite of passage.
We are still a long way from the day when every hospital has “dying rooms” as calm, pretty, and homey as their “birthing rooms.” But even under the most unpromising circumstances, it is possible to rearrange a hospital environment to better meet the emotional and spiritual needs of the dying and those who love them.
In the spring of 2016, Liz Salmi rushed to the hospital after hearing that her beloved writing mentor Barry was on a ventilator in an intensive care unit, unable to respond in any way. He’d had a stroke, compounded by sepsis. There was no chance he’d be restored to health, little chance he’d live long, and even less chance that he’d ever again breathe on his own. His room was windowless, dark, and, as Liz wrote on her blog, “noisy with hisses, bleeps and bloops from machines . . . Everything in me screamed: This sucks. I wouldn’t want to die like this!”
Barry had been struggling with a degenerative nerve disease for years and had signed documents indicating he didn’t want to die on machines. But Barry’s longtime girlfriend, his chosen advocate, was too paralyzed with shock and grief to assent to the removal of life support.
Liz and some other friends circled his bed and drew his girlfriend in while they brainstormed about how Barry might want to die. They decided on fresh air, sunlight, being outdoors, music, and dancing. One friend slipped down to her car for speakers to hook up to Barry’s iPod. Another scrolled through his playlists. A third asked an ICU nurse if Barry could be wheeled outside on a gurney or in a wheelchair, so that he could die in the hospital courtyard. But the nurse said that wasn’t practical.
Barry’s girlfriend then asked a nurse if Barry could at least be moved to a room with natural light. The nurse nodded: the “best room” in the ICU suite was just about to open up—a sunny spot, with windows opening to the outdoors. With the assent of his girlfriend, a doctor injected Barry with sedation and after a pause, removed his breathing tube. Nurses disconnected all lines and monitors except one tracing his heartbeat. Quickly, orderlies rolled his bed into the new room.
As soon as the medical team cleared out, Liz and her friends poured in. Someone opened the windows to let in the breeze. Music played out of the little speakers. Barry’s friends circled his bed, placing their hands on his legs, hands, and feet.
“Unburdened by machines,” Liz wrote, “his body began sinking into the bed. As the body shifted and settled, I said, ‘This is natural,’ mostly to remind myself that what I was witnessing was part of the cycle of life, much like a baby crying when born.” On the last functioning monitor, the bright blue line tracing Barry’s heartbeat became slow and jagged.
The monitor began to ding. Someone pushed a button, silencing it. Liz held Barry’s feet. “We listened through the end of the song, with our faces on Barry’s, tears pouring out of our eyes,” she said. “I was sobbing. We were devastated. No one danced. When the song ended, there was silence.
“A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to Barry’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of Barry’s eyelids to shine a flashlight into the pupils, looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, ‘It is 6:11. Take as long as you need.’ He exited the room. We all stood looking at Barry for a long time.”
To make a hospital death more sacred, beautiful, and peaceful, some family members and sympathetic nurses arrange for the removal of all telemetry and medical equipment, and the deactivation of all monitors and beeping sound effects. All of it is now unnecessary. At Kaiser Permanente hospital’s emergency room in Terra Linda, California, staff follows a checklist, created by Dr. Scott Schmidt and known as the RESPECT protocol. All blood draws, diagnostic tests, and taking of vital signs are halted. Medical treatment is limited to pain management. A sign is put on the outside of the patient’s door, so that staff doesn’t disturb the family. Nurses are encouraged to make sure that there’s a seat in the room for every family member, and that everyone is warm and comfortable.
Many hospitals, however, don’t have such humane checklists. It will be up to family and friends to ask, and to otherwise reclaim the space for themselves. Some people sprinkle water around the room for a ritual cleansing. Others bring in photographs, flowers, holy books or religious icons. Even flameless electric candles can create a sacred feeling. Others get into bed with the dying person, or, with the connivance of sympathetic nurses, smuggle in the family pet (sometimes it’s better to ask for forgiveness rather than permission).
In a hospital or nursing home, request a private room, and enough time to say your goodbyes and have family members present. If there’s time, ask for a transfer to the hospice or palliative care service; many hospitals have them in-house. Megory Anderson, a theologian who attends the dying, often hangs sheets to create privacy if there is a roommate.
Many people, even the nonreligious, are helped by some symbolic form of letting go. In her book Sacred Dying, Megory describes meeting privately in a hospital with an eleven-year-old girl named Katy, who was dying of cancer and was sure God was angry with her “because of the bad things I did.” It turned out she felt guilty for being mean to her brother, for being mad at her father, and especially for getting cancer, exhausting the family’s money on treatments, and not getting better.
Megory took a clean sheet and tied a knot in it to represent each of the little girl’s guilts. Then she and Katy called her parents and brother into the hospital room. Katy pointed to each knot and apologized for the perceived shortcoming it represented. After she completed her litany, her mother gasped and took her daughter in her arms, and Megory pulled back while the family cried and held each other. When everybody was cried out, Megory walked back to the bed, and together the family prayed and undid the knots one by one. The little girl died that night.
Others may find release from entrusting the one they love to the universe, or to otherwise saying “good journey” to what Shakespeare called “that undiscovered country from whose bourn no traveler returns.” Even though my father had not been inside a church for decades except for a wedding or a funeral, I gained great comfort from a volunteer Episcopalian chaplain who anointed his head with oil and followed the “Ministration at the Time of Death” from The Book of Common Prayer.
That small ceremony, in a hospital’s inpatient hospice unit, helped me acknowledge that I was turning my father over to the vast mystery from whence we come. His suffering was nearly over. It didn’t matter that the precise words, about him joining “the company of the saints,” no longer fit my beliefs, or his. The rite helped me say goodbye, and to acknowledge that I had come to the end of my role as my father’s daughter and caregiver. I felt relieved and blessed. I do not know what comes after death, but the ceremony helped me to trust that whatever greeted my father would be benign. The time had come to stop trying to rearrange externals and to simply be present with my father for the mystery about to enter the room.
Hospice nurse Judith Redwing Keyssar, author of Last Acts of Kindness, remembers a beautiful young woman days away from dying of ovarian cancer in a hospital. She began moaning, “Take me home, I want to go home.” Her father and brother, who’d flown in, took her literally and decided to try to move her to a hospice near Boston, where she’d grown up. While her mother spent hours holding her dying daughter’s hand, the father and brother were on their cell phones, calling hospices, ambulances, and airlines. They were still making phone calls on the morning that Lily took her last breath. They’d spent her last hours in manufactured busyness.
At a certain point, let go. Sometimes a hospital team will refuse to stop treatment, and sometimes family members will disagree with each other. Accept the things you cannot change. Act in a way that will leave you with the fewest regrets, and allow the one you love to die in peace. “Come back to what is truly important,” counsels hospice nurse Lori Perrine. “Pray. Reach out for guidance. Is it more important for this person to die at home, or to have a peaceful death? Sometimes they are not the same.”
It was late at night when Ed, who was teaching a photography class in Boulder, got the call. His mother, Florence, who was in her late sixties and had been in a wheelchair since suffering a stroke a year earlier, had been taken to an intensive care unit after collapsing at her front door. Paramedics had performed CPR in the driveway, despite Florence’s do-not-resuscitate order. Before they succeeded in shocking her heart back into beating reliably, her brain had been deprived of oxygen for more than four minutes.
Ed drove straight from his photography class to his mother’s bedside in the intensive care unit. Her hand was warm. Her body was unmoving. Her eyes were open, the pupils fixed and dilated. Her heart was still beating strongly with the help of stimulating drugs, and her lungs were filling and emptying rhythmically in time to the hush and swoosh of a mechanical ventilator.
Ed met with a critical care doctor who was blunt, brisk, and in Ed’s view, callous. Florence, he said, would never think or speak again. “All of our family signed off on removing the equipment,” Ed said. “It wasn’t a hard decision to make.”
While Ed waited in an outer room, a doctor pulled the breathing tube from Florence’s throat and removed all lines, tubes, and tethers. Ed returned to the now-quiet room and took his mother’s hand. Drugs were still coursing through her bloodstream, and Florence’s heart kept beating and her chest kept rising and falling for more than an hour. Esther, her trusted longtime professional caregiver, sat on the other side of the bed.
As they sat their vigil, Esther talked to Ed about his mother’s final weekend. Florence had been a nationally ranked championship bridge player, and she and Esther had just returned from a regional tournament in Las Vegas. The trip, which Florence had planned and executed with an unusual burst of energy and ambition, had been totally out of character with her passive, homebound life since her first stroke. With Esther at the side of her wheelchair, she’d played in almost all the available tournament games. Then they’d flown back to Denver, and Florence had collapsed before they’d even entered her house.
“This angel of a woman kept talking about how bright my mother was, and how mentally clear and lucid, and how much fun she’d had in Las Vegas,” Ed said. “My mom had come in second in one [bridge] event and third in another. She’d played morning, afternoon, and evening. She had more stamina than anyone expected. It was what she loved to do, and she excelled at. She was in her joy.
“There in that ICU, I felt the overwhelming sense of a larger spirit being released from the sufferings of the body. I can’t tell you specifically where it came from. It could have been all my emotion welling up for my mother. It could have been Esther, who has had a long career as a compassionate care person. But it felt larger than that.
“That tangible presence in the room with us felt larger than any experience I’d had of my mother in a physical body. It felt expansive and endless and loving and compassionate. If there was a message, despite all of these horrendous circumstances and all these machines, it was this: there was something larger there. The room was filled with love and grace.”
Florence’s lungs let out a long breath and did not refill. Ed thought it was the end and looked away. But Esther knew better. “There was one last breath,” Ed remembered. “I didn’t think it was coming, and then there was one more. It was special beyond words.”
In many cultures and religions, it is traditional for relatives and friends to ritually wash the body, or anoint it with oil, after death. Nurses are now bringing a beautiful nondenominational version of this ancient ceremony into hospital rooms. In 2011, Debra Rodgers, Debbie Roth, and Beth Calmes, all then nurses on the oncology unit at Cottage Health in Santa Barbara, California, created a “bathing and honoring practice” to help families—and the nurses themselves—say goodbye.
After washing and dressing the dead in clothes from home or a clean gown, the nurses encourage relatives and friends to anoint the body with lavender oil. “The physicality seems to be very helpful,” said Beth Calmes. “I have a theory that after witnessing a death we go into shock, and our minds become numb and chaotic. When we start bathing and touching our loved ones, our bodies understand what our minds cannot.” Here is an adapted version of their ceremony for your use.
As the hair is anointed with oil, a nurse or a family member recites, “We honor (Jane’s) hair, that the wind has played with.” Next a dab of oil is gently rubbed on the brow, as someone says, “We honor (Jane’s) brow, the birthplace of her thoughts.” In each succeeding sentence, the name of the dead person is inserted in the appropriate place.
We honor your eyes that have looked on us with love and viewed the beauty of the earth.
We honor your nostrils, the gateway of breath.
We honor your ears that listened for our voices.
We honor your lips that have spoken truth.
We honor your shoulders that have borne burdens and strength.
We honor your heart that has loved us.
We honor your arms that have embraced us.
We honor your hands that have held our hands and done so many things in this life.
We honor your legs that carried you into new places of new challenge.
We honor your feet that walked your own path through life.
We give thanks to the gifts that you have given us in our lifetime.
We give thanks for the memories that we created together.
We have been honored to be a part of your life.