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So they don't die alone

Too many patients, too little time. Sandra Clarke, a nurse in Eugene, Ore., looked in on a patient not expected to live through the night. "Will you sit with me?" he asked.

Clark assured him that she would, but that first she had to check on her other patients. Ninety minutes later, she hurried back to the man's room — only to discover he had died.

"I felt like I had let him down," says Clarke, of Sacred Heart Medical Center. "Here you are in a high-tech world in medicine and he only asked for something very simple. It seemed so wrong to me. I felt guilty and frustrated. It wasn't that anyone had done anything wrong. But it wasn't done right."

Those feelings of responsibility and compassion — from Clarke and from other patient advocates — have given birth to a movement spreading to U.S. hospitals across the nation. The goal: to ensure every patient has a fellow human being at his or her bedside at the time of death.

Among the efforts is No One Dies Alone, a program Clarke later helped create. The program, begun in 2001, relies on volunteers to sit with terminally ill patients and has since spread to several hundred hospitals, including St. Joseph Hospital in Orange and its sister institution Mission Hospital in Mission Viejo. St. John's Health Center in Santa Monica will launch the program this month.

One of the oldest such programs, Twilight Brigade, Compassion in Action, specifically serves veterans at Veterans Affairs hospitals and nursing homes across the country.

And Sacred Dying, begun in 2000 in San Francisco, trains organizations such as hospices and churches how to provide a spiritual atmosphere for people who might otherwise die alone.

Such efforts are sorely needed, organizers say. Although hospitalized patients routinely receive all the necessary medical care in their final days and hours of life, including close oversight by a doctor and nurses, these programs provide something that can fall between the cracks: a human presence.

"The two things people fear the most about dying are being in pain and being alone," Clarke says. "We try to honor the wishes of the dying."

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Isolated in today's world The need for such efforts is a reflection of modern life, say Clarke and others who operate death-vigil programs. Nurses and chaplains are often stretched too thin to be with every dying patient as they wait out those final hours.

And a surprising number of people don't have family members available to them — whether because of sudden, catastrophic accidents or physical or emotional distance.

"It's really acknowledging our reality," says Cindy Mueller, a Mission Hospital employee who volunteers for No One Dies Alone. "We have homeless people. We have people who are estranged from their families, people who are isolated, people whose family members have all died before them. We have family members who are too exhausted to be there."

Nurses are well aware that too many people — no one keeps official statistics — die alone in the hospital, says Mary Luthy, manager of community benefits at St. John's Health Center. A former nurse, Luthy is the hospital's No One Dies Alone administrator.

"It rings very true for anyone who has ever done nursing," Luthy says. "It is heartbreaking to have someone dying alone and have a full schedule of work."

Nor can hospital chaplains be available to everyone who needs them, says Michael Moran, Mission Hospital's director of spiritual care. "I would be with them in the evening and then say good night and the next morning I found they had died during the night alone," he says. "It happens too often."

Hospice programs usually provide volunteers at the time of death if family is unavailable, but No One Dies Alone and similar programs provide a safety net to those patients who are not in prearranged hospice care, Clarke says.

"This is a spontaneous situation where somebody ends up alone in the hospital," she says.

A long list of volunteers is required for death-vigil programs. In No One Dies Alone, participants — mostly off-duty hospital employees or hospital volunteers — agree to be on call for one or more three-hour shifts per month.

If needed, they report to the hospital and pick up a bag containing potentially helpful items: a Bible, prayer books for various faiths, soothing music and a journal in which they write their thoughts and observations. A sign is posted on the patient's door to alert hospital employees that a vigil is taking place.

Mueller, who is vice president of mission integration at Mission Hospital, has signed up for various midnight-to-3 a.m. shifts since the hospital launched the program earlier this year — and was called recently to attend to a middle-aged man who was estranged from his family.

When she entered the room, Mueller says, she felt unmoored. "You're in the darkest part of the night," she recalls. "I looked around for clues about who this person was."

Her eyes fell on a funny sign hanging near the bed, and she deduced that the man must have a pleasant sense of humor. With that small connection, she moved to sit next to him and gathered his hand in hers. When she began humming the hymn "Amazing Grace," he made a slight movement that suggested to her that he was comforted.

She sat with the man three times over several days. He died in the presence of another volunteer. "It was a gift for me. And I hope it was a gift for him," Mueller says of her time at his bedside.

The program for veterans, Twilight Brigade, Compassion in Action, varies slightly in that volunteers sign up to visit patients who have been diagnosed as terminal and who request visitation. They see the veterans daily, at a home or in a hospital or nursing home, for what can be weeks or months, and often get to know them well. An around-the-clock vigil is begun when the patients enter the active phase of death.

"A lot of veterans, in particular, don't have a lot of family members in the area or friends left, especially the World War II veterans," says Heidi Beattie, chief operating officer for the Twilight Brigade's national headquarters at the Greater VA Los Angeles Healthcare System. "They served us and provided freedom for us and it's our way of giving back to them for all they've done for us."

The Twilight Brigade was founded in Los Angeles in 1997 and now has chapters at 17 VA facilities in North America. The Los Angeles VA program has 520 trained volunteers from all walks of life, Beattie says.

Megory Anderson, founder of the Sacred Dying Foundation, has trained several organizations in San Francisco and nationwide on how to use her program, which emphasizes prayer and religious activity tailored to the patient's spiritual beliefs. Anderson is a theologian and author of "Sacred Dying."

The presence of others during death infuses the event with dignity, she believes. Too often, she says, modern medicine views death as a failure — something to hide — when it should be seen as an act of honor and sacredness.

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Sensitivity required Most death-vigil programs operate on the assumption that a dying person, who is often unconscious, would want someone to be present. But volunteers should tread cautiously, says Dr. Porter Storey, executive vice president of the American Academy of Hospice and Palliative Medicine.

"What one dying person wants is not what another dying person wants," he says. "Volunteers need training so they don't bring their own issues and needs into the room."

The programs' staffs understand this and prepare for it. Sacred Dying's volunteers sometimes simply sit outside the room and pray, Anderson says. "Some people want privacy during those last hours. But that is different from being abandoned."

No One Dies Alone trains its volunteers to pay close attention to the patient's responses. For example, volunteers can read, sing, pray or talk to the patient. They may hold a hand or stroke a forehead. But if the patient shows signs of agitation to such activity, they're taught it's best to simply sit quietly nearby. Volunteers call for a nurse if the patient needs medical attention.

"Presence is the most important thing we can bring," says Stephanie Hickey, program coordinator of No One Dies Alone at Mission Hospital. "You're there as an advocate."

Volunteers learn how to assess a patient's comfort, to identify the physical changes that accompany death and how to create a serene atmosphere. They learn that dying patients often focus on their memories and that while they may be unable to talk, they are often still cognizant of sounds in the room.

Those are lessons that could benefit every adult, Storey says.

"In this country, we are so frightened of dying," he says. "I've seen people doing unwise and unhelpful things at the bedside. I've seen over and over again how valuable it is to learn something about this stage of life and our reactions to it."

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shari.roan@latimes.com

Copyright © 2014, The Baltimore Sun
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