The Art of Dying Well

by Katy Butler

  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.

  GIVING CARE

  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.

  THE FINAL HOURS

  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.

  HUMANIZING A HOSPITAL DEATH

  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.”

  IMPROVISING RITES OF PASSAGE

  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.”

  WELCOMING MYSTERY

  It was late at night when Ed, who was teaching a photography class in Boulder, got the call. His m
other, 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.