Too little respect seen for the dying

Nursing homes and hospitals, where most Americans spend their final days, regularly fail to treat dying patients with respect or provide needed emotional support, according to the most definitive national survey yet of surviving family members. Bereaved relatives also faulted the medical care provided to their loved ones.

Nearly one-quarter of those dying at nursing homes didn't get relief for labored breathing, nearly one-third didn't get enough care for pain, and nearly 20 percent suffered because of the staff's incomplete knowledge of the patient's medical history, the survey found. Patients in hospitals fared only slightly better.

In contrast, families reported much greater satisfaction with hospice care provided to patients at home.

"We're moving toward factory medicine -- get 'em in, get 'em out," said Dr. Joan Teno, a geriatrician and professor at Brown University Medical School, who is the lead author of the paper published today in the Journal of the American Medical Association. "Many family members feel they must be constantly present to ensure quality care of their loved ones. Before the Baby Boomers hit in full force, we have to figure out how to provide adquate care to the dying."

Teno said the survey of relatives or close friends of 1,578 people who died in 2000 was designed to be extrapolated to all 1.9 million people who died of nontraumatic causes that year. While other studies have identified some of the same shortcomings, particularly with medical and pain treatment, this is the most comprehensive survey and the first to compare care in different settings.

"This is really the first high-quality, well-designed study to address what happens to patients and families in the last months of life in the United States. And it is an indictment of the quality of care in most institutional settings," said Dr. Diane E. Meier, director of the Center to Advance Palliative Care, who was not involved with the study.

Hospital and nursing home officials said the study identified problems they are already working on, but they acknowledged they need to do better. At nursing homes, the study authors said, federal gaps in reimbursement and resulting staff shortages have contributed to care problems.

Dr. Susan Block, director of the division of palliative care at Dana-Farber Cancer Institute and Brigham and Women's Hospital, said the study comes after six years of "very vigorous efforts nationwide to improve care" of the dying, including the addition of palliative care programs at about 20 percent of hospitals. "In that context," she said, "the study results are even more dismal."

Teno and her colleagues suggested that more hospitals need to adopt palliative care, which focuses on pain relief and other comfort measures, and that nursing homes need to ensure that their patients have access to hospice care.

But the study also found problems with hospice, which provides care for terminally ill patients who have stopped aggressive treatment. Care is typically provided in hospitals, nursing homes, or the patient's home.

One-third of hospice patients' relatives said it didn't provide enough emotional support, while

more than half of family members of patients who died in hospitals and nursing homes said the patients didn't get enough emotional support, which can include care-givers listening to patients' concerns and expressing sympathy.

About a third of those in nursing homes and 20 percent of those in hospitals weren't always treated with respect, their relatives said.

Among the relatives researchers interviewed was Foxborough resident Janet Roxborough. A nurse-practitioner, she is still seared by her parents' deaths less than a year apart in Boston-area hospitals.

"Up until the few hours prior to death, the care was not kind and not thoughtful," said Roxborough, who said she was routinely ignored when she went to the nurses' station to ask for help with her parents' care. "There was sloppy care and callous indifference."

One day, she said, she was sitting at the bedside of her 89-year-old father and got up to go to the bathroom, leaving the bed rail down.

"A nurse accosted me and said, `You left the side rail down. He could have fallen out of bed and badly hurt himself.' She said that to a person who was losing the most important person in her life. Rather than just putting the rail up, she had to make me feel bad."

The study contained one bit of good news: 71 percent of those dying had completed living wills or health care proxies to spell out what kind of care they wanted at the end. That's up from the 20 percent suggested by earlier studies since 1995. Earlier research also found that these documents were widely ignored by health professionals. Teno said she asked family members about this issue, but she declined to release those results until later publication.

"On advanced directives, we're heading in the right direction," Teno said. "Now, we have to get people to follow them." Extrapolating the study figures to the nation, the researchers said 38 percent of people in 2000 died in hospitals, 31 percent in nursing homes, and 16 percent at home with hospice services. Another 11 percent died at home with no services and 4 percent at home with nursing services.

While the study findings are based on family members' recall of what happened, Meier said they probably underestimate the problems because of people's tendency to try to put the worst behind them and mute their criticism. "What's very striking," she said, "is what they say makes for high-quality care. They're talking about being seen as a human being, being heard, being listened to."

Teno suggests that doctors and other clinicians need to spend more time just talking or sitting with patients and family members. In addition, she and her colleagues call for expanded access to hospice care, and removal of some federal financial restrictions that limit access to hospice. She also said society has to provide more money for nursing home care, which she calls "the frailest part of our health care system" because the facilities are underfunded given the demands placed on them.

"It's not going to be a quick fix," Teno warns. "The most expensive thing in our health care system is staffing, and that's what we're missing."

In Massachusetts, about 18 percent of dying patients in all settings used hospice last year, according to the state hospice federation. Nursing home officials said they have been encouraging patients to use hospice care and welcoming hospice workers. But they said their own staff can't afford to spend as much time as they'd like providing emotional support.

"We probably have gotten much better at the medical side of care, perhaps at the expense of the social side. We've got some work to do," said Scott Plumb, senior vice president of the Massachusetts Extended Care Federation, the state's largest nursing home association.

Alice Dembner can be reached at Dembner@globe.com.