A nurse in Oregon once promised a dying man who requested her company that she would return to his hospital bedside and stay with him until the end. Other duties prevented Sandra Clarke from fulfilling that pledge, but she never forgot the encounter.
In fact, the experience drove Clarke to create No One Dies Alone, a program that pairs volunteers with deathbed patients who don’t have friends or family nearby. In the past 20 years the nondenominational model has taken root in multiple states, including New Jersey.
South Jersey healthcare system AtlantiCare initiated a NODA program nearly three years ago, enabling community members to be there for people who otherwise would face death alone. In many cases the patients are unable to communicate or respond to the volunteers’ presence, program leaders said, but the mission is important to everyone involved.
Under the program, AtlantiCare said trained volunteers come in shifts, serving two- to four-hours vigils with the patient until he or she dies. The volunteers can play music that appeals to the patient, read stories or religious texts, or sit in silence — anything as long as they are present for the patient. They also try to create a calm environment, with candles, handmade blankets, photographs or other pictures.
“It provides patients with the dignity and respect they deserve,” said Maria Bocelle, AtlantiCare’s volunteer supervisor, who has overseen the program for nearly a year. “And it reminds them they are a valued member of our society.”
Assistance to the nursing team
Family members and hospital staff have also embraced the program, Bocelle said. The nursing team usually welcomes an additional set of eyes on the patient, she explained, and the service can provide some measure of peace to family members who couldn’t reach the bedside in time.
AtlantiCare — with an Atlantic County hospital that spans two campuses, plus emergency clinics and other outpatient facilities dotting the region — is one of the few Garden State systems using the NODA name for its program; nearby Shore Medical Center also has a program, which dates back to 2009. But the concept exists in various forms. The state has more than 60 licensed hospice organizations, according to the Home Care and Hospice Association of New Jersey, many of which have initiatives designed to meet the same needs.
New Jersey hospitals often engage outside or affiliated hospice services — a palliative, team-based model designed to help patients, and their families, in the final six months, which can also be applied at home, in nursing homes and in other settings. And hospice organizations commonly create programs similar to NODA, to ensure the patient has companionship in the final hours. (AntlantiCare’s hospital has both options.)
“Many hospices have programs in place to ensure the people they care for at the end of life do not die alone — particularly if there is no family or loved ones to provide that presence,” said Jon Radulovic, vice president of communications with the National Hospice and Palliative Care Organization.
These hospice efforts can involve trained volunteers, Radulovic said, and are often called vigil or 11th-hour programs. “It’s not uncommon for professional staff to be with a patient and family during this experience,” he said. “But volunteers are an important resource that can help patients and families.”
Medical schools are interested
The concept has also prompted interest at some of New Jersey’s medical schools. According to the New York Times, the former University of Medicine and Dentistry of New Jersey — which was replaced in 2012 by the Rutgers University Biomedical and Health Sciences program and which oversees two medical schools and a half dozen other clinical programs — launched a program in 2010 to pair medical students with dying patients.
Rutgers officials said the program is slated to restart at one of the two medical colleges, New Jersey Medical School, in Newark, under Dr. Dorian Wilson, a surgeon who leads the schools Healthcare Foundation Center for Humanism and Medicine. The chaplain at Newark’s University Hospital, a key training ground for NJMS, will also be involved.
The Robert Wood Johnson Medical School, in New Brunswick, has not re-launched the program, officials said. (Rutgers is now examining the potential benefits of combining some or all aspects of the two medical schools.)
The interest in NODA-like programs also reflects the shifting priorities regarding end-of-life care — an issue that was the subject of an NJ Spotlight roundtable earlier this year. Studies show most people would choose to die at home, with family, but in reality, many spend their final days in hospitals or long-term care facilities, often undergoing major medical interventions.
A peaceful passage
This same issue was clearly on the mind of Sandra Clarke, the Oregon nurse, when she realized that her job of caring for others had prevented her from being able to honor the dying man’s simple wish: to have someone there. “I looked around; scores of people were nearby providing state-of-the-art patient care. For this man, state-of-the-art should have been dignity and respect,” Clarke wrote in an essay published in 2002.
Linda Schwimmer is the president and CEO of the New Jersey Health Care Quality Institute, which runs the Conversation of Your Life program designed to help people plan their end-of-life care; she said most participants are largely focused on avoiding unwanted care and burdening their families. Fear of dying alone isn’t a frequent topic in these forums, she said.
But companionship programs like NODA are an important component of the death process for family members and volunteers. To address this need in Atlantic County hospitals, AtlantiCare’s Bocelle manages a team of about 40 regular volunteers. These individuals receive training on how to best help the patient and liaise with the staff; they are also counseled on how to handle the emotional toll involved and the group tries to gather every few months for support meetings.
When AtlantiCare officials identify a patient who is likely to live less than 24 hours, and that person has no support system, they consult the patient — if possible — and initiate the NODA request, Bocelle said. Volunteers are called in, whatever the hour or weather, and the vigil begins.
In Atlantic County, the volunteers get a kit that includes a picture of a dove, to hang on the door to alert staff that a vigil is taking place, and a photograph of an open window — a symbol in several cultures and faiths that suggests a peaceful passage to another world or place. Other supplies include battery-operated candles, an iPad so they can play music or even movies, journals and prayer books.
Volunteers are encouraged to record their own feelings throughout the process and, when the patient dies, Bocelle explained. Those involved “say it is one of the most wonderful experiences” to be present with someone who is dying, she said. “They have to be emotionally prepared before they even schedule a shift.”
The AtlantiCare NODA program is open to those over age 18 but excludes people who recently experienced the death of a family member or loved one, given the emotional toll of the work involved. Interested community members can call the volunteer office at 609-404-7477 or apply online.