At some nursing homes, a changing attitude toward death

Even in nursing homes, where hundreds of thousands of people die each year, death has long been a touchy subject.

Administrators thought they were doing residents and staff a psychological favor by whisking dead bodies out back doors and carrying on as usual. It seemed too depressing to think about how many people were leaving and how many would follow.

Attitudes are beginning to change, though, thanks to a greater emphasis on bringing meaning and individual choice - in other words, more life - to those last years in long-term care.

Rather than assuming they knew best, nursing-home leaders also started asking residents like Mary Grace Dippolito how they feel.

Dippolito, 74, attended this month's memorial service for people who had died - there were three this time - at her nursing home, Sanatoga Center in Pottstown.

Dippolito, who has been at Sanatoga a year, says she finds such events uplifting. It's important, she said, to say out loud that she and her neighbors matter to one another. She likes to be with the group, nodding together at shared memories.

"Such things do happen to all of us," she said, "and it's nice to acknowledge: 'I knew you. I was happy to know you. Now I'm going to say goodbye.' "

She also finds it comforting to know that the group will talk about her one day. "I would like them to acknowledge that they knew me," she said.

Sanatoga is among a growing number of long-term care facilities that are addressing death a little more openly.

Some display plaques in common areas to memorialize the newly departed. Some facilities encourage residents and staff to write messages to grieving families. Some place a rose on the empty bed. Staff and residents may flank the stretcher as a body is wheeled out - by the front door. Some ring a "prayer bell" when a resident dies. A few even give staff members closest to the deceased a day off.

At Spring House Estates, a continuing-care retirement community in Lower Gwynedd, there are 30 to 40 deaths a year in the 96-bed skilled nursing facility.

Families sitting vigil are given snacks, poetry, and care items such as lip balm. A little angel hangs from the door. When a resident dies, the body is draped with a white memory quilt made by independent-living residents. Doors stay open as the body is taken out. Once the funeral-home employees leave, the quilt tops the empty bed.

"This is a part of life and we honor that," executive director Donna Thompson said.

Sanatoga is likely to be the last home for about half of its 130 residents. The other half come for limited rehabilitation stays. Last year, 21 residents died there. At any given time, eight to 10 nearing the end of life are receiving hospice services.

Executive administrator Scott Centak said that, historically, nursing homes thought of death as something that primarily affected families, not other residents or staff.

" 'Mary passed away. Mary's family is grieving,' " he said of the old perspective. "But what about Mary's friends here? What about the staff here?"

Nursing homes and assisted-living facilities are home to about 1.6 million Americans. How much attitudes about dying have really changed there is hard to know. Industry leaders claim wide buy-in. Academic experts, though, still see wide variation.

"I'm not sure there's been a huge conversion," said Susan Miller, a gerontologist and epidemiologist at Brown University. Still, she said, awareness of the need to mourn has increased in recent years.

Sarah Matas, resident services administrator at Barclay Friends, a West Chester continuing-care community, recalls being a hospice social worker at a Delaware nursing home in the 1990s. As she sat with a patient who had just died, "someone took that person's name out of the slot in the door," she said, her voice still angry. "They literally weren't cold in their bed yet."

Such a hush-hush approach may have been well-intended, but residents were left to wonder what had happened to their friends and, more important, what would happen to them.

Kathrin Boerner, a psychologist at the University of Massachusetts Boston, said residents find it "between ridiculous and offensive" when deaths are not acknowledged. The implication is that their lives don't matter much, that "that's how you're going to be wheeled out, while nobody's looking."

It's easy to see why the issue is thorny. Many residents have dementia. How much can they understand? What's the point in upsetting them?

Then there are privacy regulations, which some blame for one of the most disturbing scenarios. A resident gets sick and disappears. Did she die? Is she in the hospital? Did she move? No one knows.

Barclay Friends addressed that problem by asking residents if they want neighbors to be informed if something happens to them.

Some experts worry that constant exposure to death is harder for staff than for residents. Boerner said many employees receive very little training in how death occurs or how to handle it. "The staff is utterly unprepared to deal with it," she said.

Even small steps, like giving aides who worked closely with a dead patient the news by phone before they come to work and see the empty bed, she said, make workers feel better.

"If you want the staff that cares for that person to be caring and compassionate, you have to ask yourself what does the staff need to be able to do this," she said.

Michael Lepore, a sociologist at Research Triangle Institute, said nursing homes' reluctance to talk about death reflected societal attitudes.

"I don't think it's fair," he said, "to blame nursing homes for not offering a greater awareness of death and dying when it's certainly a microcosm of our society, which also doesn't do that."

Industry experts say changes are being driven by the growing presence of hospice care in long-term care facilities and by the culture-change movement, which promotes homelike, individualized care. It emphasizes what patients want and can contribute in their last years.

Genesis Healthcare, which operates Sanatoga, has a four-year-old program it calls Adding Life to Years. It reminds staff of the long lives full of family, work, and passions that residents had before they had to leave their homes.

ACTS Retirement-Life Communities, which owns Spring House, has its own hospice program, which many of its independent-living residents serve as volunteers.

Marian Schurz, corporate director of home and community services, said residents want to hear about hospice and end-of-life planning. She hopes to hold meetings modeled on "death cafes," trendy social gatherings where people talk about death and mortality.

"They are hungry. They want to talk about it," Schurz said. "They have questions."

Sanatoga residents chose wind as the theme for the March memorial service. It was fitting for a breezy St. Patrick's Day. The wind, said Chaplain Don Eisenhauer, is messy, unpredictable, uncontrollable.

"It's a reminder that we don't really have a say over when our loved ones are going to die," he told the group. "We face the moment and we deal with whatever comes. . . . It helps us to make the most of the days we have."

About half the crowd stayed as recreation director Johanna Applegate, acting on a resident's suggestion, displayed a sample black armband residents and staff might wear to show they were mourning. They liked it. She updated plans to make a pale pink patchwork quilt that will drape the bodies of residents as they leave the building. She added that Mary Ann Luft, vice president of the resident council, will visit the roommates and families of residents who die.

Luft, 67, who was disabled at birth and has lived at Sanatoga about three years, has pushed for more openness when her friends are nearing death. "I was pretty close to a couple of them and I would have loved to be able to say my goodbyes when they were here in the flesh," she said.

She wants her only memorial service to be at Sanatoga.

"I'm prepared, yes. I have the Lord as my savior and I know that I'm going home with him," she said. "My family knows I loved them. I have apologized to everyone I might have hurt, so I'm ready to go."

Some experts say the elderly can educate others about coping with life's end.

"These old people, 80 and beyond, have a lot to teach us about how to maintain resilience, because a lot of them are very good at dealing with loss," said Renee Shield, a Brown University anthropologist.

Sanatoga's Centak said that residents are asking for more opportunities to express their wishes, now that they know the staff is listening. The rituals around death are, for the first time, a true collaboration.

"Isn't that a legacy in itself?" Applegate asked.

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