Death and its companion, grief, have a profound presence in long-term-care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.
But the tides of emotion that ripple through these institutions are rarely acknowledged openly.
“Long-term-care administrators view death as something that might upset residents,” said physician Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So when someone passes away, doors are closed and the body is wheeled discreetly out the back on a gurney. It’s like that person never existed.”
At Gray Health’s memorial service on a warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said during the ceremony.
Outside, residents and staff members joined dozens of family members who had gathered, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the attendees turned their faces to the sky.
Miles wants to see bereavement freely recognized to end what she calls “the silence surrounding loss and death in long-term care.” Following discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in nursing homes and assisted-living residences across the state.
“Dr. Miles’s work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.
Fraught reactions to loss and death are common among nursing assistants and other staff members in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can lead to a host of physical and psychological symptoms, including depression, distancing and burnout.
Joanne Braswell, director of social services at Gray Health, has felt that. She remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.
“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are clearly dying, “I find myself pulling away,” she said.
Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.
“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she is deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.
Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’s bereavement guide recommends. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged rather than hidden away.
If a worker seems distressed about a death, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.
Other best practices include offering support to residents and relatives of the deceased, and recognizing residents’ bereavement needs in care plans.
Some facilities create unique approaches. In one Georgia nursing home, staff members’ hands are rubbed with essential oils to produce a calming effect after a death, Miles said. In Ontario, St. Joseph’s Health Centre Guelph holds “blessing rituals” in the rooms where people have passed away.
Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.
“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”
When a death occurs at Carlyle Place, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a book in which people can write comments.
Rockenbach says he’s considering starting a support group for staff and hosting a “death cafe” where residents “could come and hear what other people have gone through and how they got through it.”
Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of a resident, in his 90s, with whom she had grown close.
Over time, he confided to the nurse that he was tired of living but holding on because he didn’t want family members to suffer the grief that his death might cause. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”
One morning, she found that his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”
Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent living apartment — a change that signaled the end of their time living together.
Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago, after her first husband died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”
She found herself turning to Reed, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man,” and they married. But before doing so, they talked about what lay ahead, and Peak promised she would carry on.
In late May, she was called on to keep that promise after Reed suffered a severe head injury in a fall and died.
“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.
This article was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.