The Art of Dying Well

by Katy Butler

  “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.”

  SAYING GOODBYE

  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.

  Ways to Prepare:

  At home:

  • Prepare for the physical, emotional, and spiritual needs of the dying and those who love them.

  • Bring in hospice if you can, and haven’t already.

  • Make pain management a priority.

  • Plan an alternative to calling 911 in a crisis.

  • Get a do-not-resuscitate order (DNR) and a POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for the same).

  • Keep focus on what really matters: accepting whatever occurs, and having a peaceful death.

  In the hospital:

  • Ask for the removal of all unnecessary medical equipment, beepers, monitors, and sound effects.

  • Ask for “comfort care only”: no blood draws, diagnostic tests, or vital signs—only pain management.

  • Don’t be afraid to claim the space, smuggle in the dog, and improvise rituals that speak to you.

  • You may wish to recite poems or prayers. Here are some beautiful selections from around the world:

  Tibetan Prayer to Be Spoken by the Dying

  Through your blessing, grace, and guidance, through the power of the light that streams from you:

  May all negative results from my prior actions and history, may all destructive emotions, may all obscurations, and may all blockages be purified and removed,

  May I know myself forgiven for all the harm I may have thought and done,

  May I accomplish this profound practice and die a good and peaceful death,

  And through the triumph of my death, may I be able to benefit all beings, living and dead.

  —Tibetan Book of the Dead

  Anglican (Episcopalian) Prayer for the Time of Death

  Into your hands, O merciful Savior, we commend your servant [insert name.]

  Acknowledge, we humbly beseech you, a sheep of your own fold, a lamb of your own flock, a sinner of your own redeeming.

  Receive [him or her] into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.

  May [his or her] soul and the souls of all the departed, through the mercy of God, rest in peace. Amen.

  —Book of Common Prayer

  Muslim Prayer to be said by companions at the moment of death

  Inna lillahi wa inna ilayhi raji’un.

  Verily we belong to Allah, and truly to Him shall we return.

  Hebrew Vidui (Prayer in anticipation of death)

  I acknowledge before the Source of All that life and death are not in my hands.

  Just as I did not choose to be born, so I do not choose to die.

  May my life be a healing memory for those who knew me.

  May my loved ones think well of me, and may my memory bring them joy.

  From all those I may have hurt, I ask forgiveness.

  To all who have hurt me, I grant forgiveness.

  As a wave returns to the ocean, so I return to the Source from which I came.

  —CONCLUSION—

  Toward a New Art of Dying

  Fear no more the heat o’ the sun

  Fear no more the heat o’ the sun,

  Nor the furious winter’s rages;

  Thou thy worldly task hast done,

  Home art gone, and ta’en thy wages:

  Golden lads and girls all must,

  As chimney sweepers come to dust.

  Fear no more the frown o’ the great;

  Thou art past the tyrant’s stroke;

  Care no more to clothe and eat;

  To thee the reed is as the oak:

  The scepter, learning, physic, must

  All follow this, and come to dust.

  Fear no more the lightning flash,

  Nor the all-dreaded thunder stone;

  Fear not slander, censure rash;

  Thou hast finished joy and moan:

  All lovers young, all lovers must

  Consign to thee, and come to dust.

  No exorciser harm thee!

  Nor no witchcraft charm thee!

  Ghost unlaid forbear thee!

  Nothing ill come near thee!

  Quiet consummation have;

  And renownèd be thy grave!

  —WILLIAM SHAKESPEARE, from Cymbeline

  EVERYTHING BROKE HER WAY

  I close this book with a story of the late Louise Manfreddi, who got the care that all dying people deserve, and few get. Her “good death” was the fruit of seamless long-term collaboration among her family members, doctors, nurs
es, and others. She was the daughter of poor Methodist ministers in upstate New York. Her husband, Gene, was a house painter. In the 1950s, they bought a home in Syracuse, where she worked as a school aide and raised two daughters, Anne and Lee. In her spare time, she gardened, read voraciously, started a feminist consciousness-raising group, and loved to talk about politics. When she was in her mid-fifties, she suffered a crippling brain bleed and was never again capable of managing daily life on her own.

  After months of despair, Louise built a new life with the help of her family. She learned to walk and talk again, partly by watching Sesame Street, but she never regained the capacity to sequence practical tasks. She could warm a cup of coffee in the microwave, but not make it from scratch. She could read an article, but not a book. She needed her husband or one of her daughters to lay out her clothes in the morning and to help her wash her hair. She had to stop gardening and driving, but she returned to keeping up with politics and seeing family friends. She volunteered as a greeter at her church, always wearing a maroon beret; she often sat in a pew with people who’d come alone.

  She died at the age of eighty-four, of pneumonia, in a beautiful oak-paneled hospice on a hill above Syracuse, her home town. As she took her last breaths, her daughters were holding her hands. Her body smelled sweet, thanks to a compassionate orderly who (with the family’s permission) had washed her and anointed her body with fragrant oils.

  Many of us hope for good deaths if we fill out advance directives and get comfortable, on a spiritual level, with the reality of death in the abstract. We hope to die at home and avoid intensive care. But a good death often requires more support than the right paperwork and the right state of mind.

  Louise got it. Thanks to an innovative federal program, she had the best experience of death, despite a difficult long decline, of anybody I’ve ever known. In her last eight years, she was in the hospital only once. She never spent a single night in a nursing home. She had the extraordinary luck to be diverted from the disjointed medical care experienced by most American elders and into an integrated program that supported her from beginning to end. She died a better death than many people I know with more money and education, and Rolodexes full of influential names.

  Her pathway to a good death started, oddly enough, with a botched colonoscopy when she was seventy-six. She was taken to St. Joseph’s Hospital in Syracuse for surgery to remove a perforated section of her colon. There, a perceptive social worker took a close look at her husband. Louise’s daughters had long since married and moved out, and Gene, who’d retired early on Social Security to care for his increasingly dependent wife, was spent. In a tearful family meeting at the hospital, the social worker persuaded Louise to enter the Alzheimer’s unit of a local nursing home.

  The stay gave Gene a break. But Louise was bored, miserable, and far more mobile and alert than her fellow residents with classic Alzheimer’s, some of whom spent the day weeping in their wheelchairs. She wanted to go home. But Gene couldn’t manage alone anymore, and he balked at selling their house and using the money to move with her into some form of assisted living. Bringing in private health aides wasn’t an option, because the Manfreddis couldn’t afford them, and in any case didn’t want to give up their privacy.

  It was then that Louise’s daughter Lee, a web designer, searched online and found an innovative federally funded program called PACE. The mission of the Program of All-Inclusive Care for the Elderly is to keep people like Louise at home, by providing extensive support to their caregivers. A program was just starting up in Syracuse, as part of Loretto, a nonprofit founded by the local Catholic diocese, that had been looking after the elderly since 1926. Loretto was closely affiliated with St. Joseph’s Health, another nonprofit whose flagship hospital had been named a “best regional hospital” by U.S. News and World Report. The Syracuse program, like all PACE programs, was modeled on a pioneering effort, begun in 1971 in San Francisco’s Chinatown, called “On Lok,” which means “peaceful happy home” in Cantonese. Started by a social worker and a dentist, On Lok was never promoted as a pathway to a good death. Its goal was to keep fragile elderly people healthy, strong, and well-supported enough to stay with their families in the Chinese community, rather than being funneled into hospitals and nursing homes.

  For the Manfreddis, the PACE emphasis on living a good life was the first step on the pathway to a very good death. As soon as Louise entered the program, the lives of everyone in her family changed. A nurse came to the house and made sure Gene was strong enough to keep his wife at home with adequate support, and an occupational therapist checked to see that the house itself was safe. (A PACE handyman followed later to make recommended upgrades, such as adding grab bars and railings.) A PACE social worker helped the couple fill out the paperwork to qualify Louise for Medicaid (which, along with Medicare, would pay PACE a monthly lump sum to cover Louise’s care) and got the couple to prepay for funeral plans, which wouldn’t be counted against them in assessing their Medicaid application.

  Making burial plans flowed naturally into getting the couple thinking about the end of life. The nurse arranged for a MOLST (Medical Order for Life-Sustaining Treatment) form, signed by a PACE doctor, detailing Louise’s medical wishes. She chose her husband, Gene, and her daughter Lee to make her decisions when she could no longer make her own.

  * * *

  From then on, PACE handled all of Louise’s care in one inclusive package. It made no distinction between curative medicine, rehabilitation, social work, having fun, socializing, and practical support. It provided them all, and it saw her not as a diagnosis, but as a whole person, and it ministered to her body, heart, and soul. Three days a week, a van took Louise to a daycare program in a converted commercial building in Syracuse, giving Gene a break. From there, she and other PACE participants often set out on field trips, to view pumpkin festivals or fall leaves, and to visit casinos and movie theaters.

  PACE served everyone lunch and sent Louise home with dinner and food for the weekend. In midwinter, the PACE group toured “Lights on the Lake,” a set of elaborate displays of Christmas lights arrayed around Onondaga Lake. Louise was beloved by PACE attendants, who saw their work as a calling, not a job. The van drivers and home health aides were crucial members of the PACE team, and they were often the first to notice signs of health problems in clients. Their observations helped nip issues in the bud, and they were included in the regular case conferences held to discuss each client.

  When Louise developed cataracts, she got surgery. When she was diagnosed with macular degeneration, a PACE van drove her to an ophthalmologist for expensive injections to slow its progress. PACE paid for hearing aids, because hearing well keeps people social, and happily social people are less likely to have their dementias worsen. It covered eyeglasses and dentures, unlike standard Medicare. She could get her hair done for ten dollars at a beauty shop at the daycare program, enjoy visiting musicians and pets, and see a podiatrist and a physical therapist, too—all at no charge to the family. Once a week, a PACE attendant came to the house to help her bathe. A nurse was on call twenty-four hours a day, and when Louise got sick, one came to the house.

  PACE paid for an alert device in case she fell. It sent her home with plastic-wrapped packets of her medications, labeled by day, hour, and dose, so that all her husband had to do was rip the packages open and give them to her at the right times. When she became incontinent, PACE delivered the right-size diapers. “What that meant was that my mother could live with my dad, who had no special training,” said her daughter Lee. “He could concentrate on being her husband and keeping the house together.”

  In her last year of life, Louise stopped being a greeter at her church and grew increasingly weak and quiet. She lost ten pounds without intending to. Nobody talked about her dying, but it was evident that she was in steep decline. She grew gently delusional, congratulating one daughter for a nonexistent work promotion, and consoling the other about an imaginary financial crisis that was s
upposedly forcing her to sell her house and to move away. She went to the daycare center less and napped for hours on the couch at home. She lost the ability to swallow vigorously enough to prevent food from entering her lungs, and she endured a bout of pneumonia, which was treated with antibiotics at home.

  After she recovered, PACE attendants came to the house three times a day to puree food for her. A nutritionist went to great lengths to stimulate her appetite, and everyone turned a blind eye to the fact that Gene also fed her ice cream. It was a tacit trade-off: to allow her simple pleasures rather than turning what remained of her life into a grim death-postponing project.

  * * *

  Shortly before Thanksgiving in 2015, Gene woke up in terror in the middle of the night. Louise was lying next to him, struggling to breathe, making horrible, rattling sounds. He called an ambulance. Louise had again contracted pneumonia.

  At St. Joseph’s Hospital, which cared for all PACE clients, it was touch and go. When they first arrived, Gene wasn’t sure his wife would make it through the next ten minutes. Nurses set up a thin tube at her nostrils to deliver high-flow oxygen, and inserted intravenous lines for antibiotics to fight the infection, and saline to counter dehydration. Louise rallied at first and stopped panting for breath. But she didn’t get better; in fact, each day she got worse. Fluid was building up in the space between her lungs and the chest wall.

  About a week after her arrival, her doctors asked her and her family whether they’d agree to a thoracentesis, in which a long, thick needle would be inserted between Louise’s ribs to draw out the fluid and make it easier for her to breathe. It would probably make Louise feel better temporarily, the doctors said. But the procedure itself would be painful, it wouldn’t permanently cure the problem, and it carried risks of its own. As Lee remembers it, “My sister Anne asked the doctors, ‘If it was your mom or your sister, would you do it?’ They [the doctors] danced around it with their words, but with their eyes and their faces, they said ‘no.’ ”