For the Families of the Dying, Coaching as the Hours Wane
For the Families of the Dying, Coaching as the Hours Wane
By JANE GROSS
Greg Torso’s death announced itself with a long exhale and then silence, as the breath literally left his body. His mother had been told to expect this, so she was not scared.
Ms. Torso had worried that an undertaker would barge in moments after her 42-year-old son died, before she had had time to say goodbye. She had been assured she could spend as much time with the body as she wanted.
Could she bathe and dress him? Save a lock of his hair? Commemorate his passing with wine and reminiscence at the bedside? All of that was fine, she had been told, setting the stage for a death that she later said had left her “on the edge of euphoria.”
Ms. Torso was coached and consoled through the final days and hours of her son’s life, a rarity even under the umbrella of hospice, which for three decades has promised Americans a good death, pain-free, peaceful and shared with loved ones at home.
But there is a growing realization that hospice has its limitations. Doctors, nurses, social workers, clerics and volunteers are rarely there for the final hours, known as active dying, when a family may need their comforts the most.
Now those final moments are a focus of new attention as hospices broaden their range of services, inspired by a growing body of research on the very end of life. More are encouraging the calming properties of music, meditation, aromatherapy and massage for both patients and families. Some are increasing the training for so-called 11th-hour companions who families can request be with them.
Holding a dying person’s hand may be frightening for a loved one alone at the bedside. Relatives and friends may not know that hearing is the last sense to go, and neglect to soothe the patient with a steady, reassuring murmur. Leaving the room briefly may mean missing the moment of passing and always carrying that regret.
“These final moments matter, but often, when families and patients need us most — to explain the process, calm the situation, take away the negative energy and allow them to be more present — we aren’t there,” said Henry Fersko-Weiss, vice president for counseling services at Continuum Hospice Care in New York City, which has a new program that has been keeping vigil with the dying and their families.
The American hospice movement has grown from one program in 1974 to 3,650 in 2004, serving eight million Americans, according to the National Hospice and Palliative Care Organization. And more people are expected to choose hospice care as it extends its reach into hospitals and nursing homes, where palliative care is not routinely available. At the same time, those who seek aggressive treatment up to the end are welcome at hospice programs that once turned them away but that are now “open access.”
Despite all these changes, most people, in fear or denial, wait until the last minute to enroll. That robs them of the preparation that was so vital to Greg Torso’s mother, Carol, and that hospice leaders, like Andy Duncan of the national organization, say should be routine.
“Actually coaching and counseling people through the time of active dying,” Mr. Duncan said, “is something we hope to convince every hospice in the nation to do.”
Preparing
The Torsos were the first to use Continuum’s vigil program, which has coached and consoled a dozen families in its first year.
Greg had survived 15 years with AIDS and related cancers. When his doctor said further treatment would be useless, Mr. Torso enrolled in hospice, and welcomed extra help from Mr. Fersko-Weiss and 29 specially trained volunteers who call themselves doulas.
That is a Greek term for women who serve, more commonly at home births to assist both midwife and mother. But the guiding philosophy is the same and borrows from Eastern religions: to honor the end of life as well as the beginning.
Mr. Fersko-Weiss is a gentle man who insinuates himself slowly. When he first described the dying process to Ms. Torso, she found it hard to listen. So they shifted gears, talking about Greg’s life and looking at photos of him in better days.
On a subsequent visit, Ms. Torso sought reassurance that she would not “just fall apart.” On another, Mr. Fersko-Weiss told her there might come a moment when she would have to give her son explicit permission to die. She did — “You can go, Greggy. You can go whenever you want” — toward the end of what would be a 68-hour vigil, involving 10 doulas (pronounced DOO-lehs).
Gwen Lee’s needs were different as she prepared for the passing of her eldest sister, Vivienne, who died at 60 after a 10-year battle with brain cancer.
Years of pretending that all was fine had given way, for both of them, flight attendants from Ireland, to acceptance. As Gwen put it, “We were prepared for the end of her life, but no one else was.” Some friends and relatives began second-guessing the decisions, arguing at Viv’s bedside, arriving uninvited and creating a “soap opera,” Gwen said, “where we were left trying to keep them happy.”
It is not uncommon, hospice workers say, for those not involved in day-to-day care to bring their own fears and conflict to the deathbed and inadvertently become a burden. Into the tumult came Mr. Fersko-Weiss, a Buddhist whose religion says that “what happens to the soul is partly determined by how it leaves this life.” The scene of death, he said, is a “sacred space,” and the doula’s job is to protect it.
To that end, he and Gwen, 51, considered moving Vivienne, and her two beloved cats, to an in-patient hospice where they could control who visited. Just knowing there was a fallback position reassured them.
“It made all the difference,” Gwen said. “Henry pulled me out of the chaos and kept my head on the goal.”
The Vigil
Chloe Tartaglia, a pre-med student, yoga teacher and former birth doula, had never seen anyone die when she volunteered for the vigil program.
She learned the signs of imminent death in her 16-hour training program, how to match her breathing to the patient’s and use visualization and aromatherapy to calm everyone in the room. On the subway, headed to her first case, Ms. Tartaglia, whose father was a hospice physician, concentrated on her goal: to be “like water and flow to the place where there’s need.”
She found herself in a shabby apartment near New York University. A tiny woman lay in bed, wasting away from “failure to thrive,” Ms. Tartaglia had been told. The woman’s husband was terrified, venturing into the room only to give her morphine, as he had been instructed by hospice nurses.
The woman’s daughter, none too fond of her stepfather, was at work, having left behind a phone number. Ms. Tartaglia pulled a chair to the bedside.
For five hours, Ms. Tartaglia said, she sat beside the woman and held her hand “with intention,” as she had been taught, enclosing it between her own. She had no sense of time passing until her shift was about to end.
“I told her I’d be leaving soon but that someone else was coming and she wouldn’t be alone,” Ms. Tartaglia said.
Five minutes later the woman died.
Ms. Tartaglia called the daughter, who arrived calm and efficient, ready for the logistics that follow death. “I can’t deal with him,” she told Ms. Tartaglia as the old man keened.
Ms. Tartaglia guided him into the kitchen and fixed tea. “You deal with yourself and your mom,” she told the daughter. Ms. Tartaglia followed her heart and suggested a deathbed ritual. As she slipped from the apartment, the daughter was combing her mother’s hair.
There would be more vigils for Ms. Tartaglia. One of the most memorable, she said, included the chance to hear Gwen Lee take her sister on whispered journeys to places Vivienne had most loved in the days when being a stewardess was glamorous.
With one of Vivienne’s cats at her head and the other draped over her legs, Gwen would set the scene: An overnight flight to Africa. Glaring sun as the cabin doors open. Days between flights to romp at the beach with captain and crew.
While Gwen soothed her sister, Ms. Tartaglia lighted candles. She massaged Gwen’s feet, helped choose the music for Vivienne’s grand exit, Sarah Brightman singing “Time to Say Goodbye.”
Ms. Tartaglia’s shift ended three hours before Vivienne died. As she left, Ms. Tartaglia removed the oxygen mask that was intended to make Vivienne more comfortable but was chafing her face.
The Aftermath
A month to the day after Dominggus Pasalbessy died, Mr. Fersko-Weiss visited the three daughters who had cared for him. This was a formal opportunity for Pat Jolly, 62, Helen Santiago, 58, and Anita Pasalbessy, 55, to review their experience. After a death, Mr. Fersko-Weiss told them, “something said or not said, something you wish you had done differently, can stick inside you like a splinter.”
The lights were low in Ms. Pasalbessy’s Riverside Drive apartment, and Mr. Fersko-Weiss suggested a CD their father had loved, music from the South Moluccan islands, now part of Indonesia, the native land he had left as a teenager on a tramp steamer. The sisters sat for a brief meditation, letting the bustle of their day be replaced with images of their father, who died of lung cancer in the same bed where his wife had died a dozen years earlier.
All three described feeling peaceful and reverent at the time of his passing. It was like being “inside a cocoon,” Ms. Pasalbessy said, “just me and my sisters, and Daddy, all together, in a place where nothing bad could touch us.”
Only when pressed did each recall her particular moment of distress.
Ms. Pasalbessy agonized that she had compromised the independence of a man who “never wanted to be fussed over.” Mr. Fersko-Weiss reminded her that eventually her father had stopped resisting his daughters’ ministrations and had told them, “You’re good girls, such good girls.”
Ms. Jolly’s concern was whether they had adequately medicated him. But her father’s mantra had been “mind over matter.” Perhaps, Mr. Fersko-Weiss suggested, he chose a measure of pain, rather than unawareness, as an assertion of strength.
Ms. Santiago had trouble forgetting the sisters’ squabbling as they tried to dress him, three strong-willed women each with her own idea of how to get his arm through a pajama sleeve. “He had to have felt our tension, our nervousness,” she said. “But that’s when you guys walked in and everything fell into place.”
Three doulas were with the family, in shifts, from dusk on April 9 until late afternoon on April 11. At 3:10 p.m., after a telltale rattling in his chest, Mr. Pasalbessy let out a breath. Then another, as two tears trickled down his cheek.
“It was like we could hear you talking to us,” Ms. Jolly told Mr. Fersko-Weiss. ” ‘You’ll see this. You’ll hear a certain breathing pattern.’ This dying was such a wonderful experience, if death can be that. And it’s because there was no fear of the unknown.”
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