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 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 other patient advocates - have given birth to a movement spreading in hospitals across the nation. The goal: to ensure every patient has a human at bedside at the time of death.
Among the efforts is No One Dies Alone, a program Clarke 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, Calif., and its sister institution Mission Hospital in Mission Viejo. St. John's Health Center in Santa Monica, Calif., will launch the program in June.
One of the oldest programs, Twilight Brigade, Compassion in Action, 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 to provide a spiritual atmosphere for people who might die alone.
Such efforts are sorely needed, organizers say. Although hospitalized patients routinely receive 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."
The need for death-vigil programs is a reflection of modern life, says Clarke. Nurses and chaplains often are stretched too thin to be with every dying patient in those final hours.
And many people don't have family members available 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 aware that too many people - no one keeps 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 to 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 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.
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, says Megory Anderson, the foundation's founder. "Some people want privacy during those last hours. But that is different from being abandoned."
No One Dies Alone trains 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 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 to assess a patient's comfort, to identify the physical changes that accompany death and to create a serene atmosphere. They learn that dying patients often focus on memories and while they may be unable to talk, they often are 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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