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 Families Feeling Left Out Of End-Of-Life Loop, Study Finds

Families of the dying are still feeling left behind as they take their loved ones on their final journeys, a new study has found.
A team of researchers in Missouri and Washington conducted hundreds of interviews with nursing home staff, residents, and families in the hopes of getting a handle on what providers are missing as they offer end-of-life care. Half of the family members interviewed said their “expectations for care… were not met,” researchers found.
More than one-quarter of elderly Americans die in nursing centers every year, a figure that will likely grow in the years ahead. Many providers readily admit that they struggle with offering “a good death” in their homes.
Hoping to clarify things, a team of researchers interviewed hundreds of dying people, nursing center staff, and relatives and loved ones of the dead or dying. Family members were more likely to complain about being left out of conversations, and often left to their own devices, as they watched their loved ones die.
“And so far as hydration went,” one relative told the research team, “I think it wasn’t made clear to us, should we try to give her some liquids? Should we try to give her anything by a syringe or anything like that, or whatever? So we just did it on our own.”
“They didn’t communicate with us at all,” one exasperated relative told researchers.
Other relatives expressed worries about staff talking with each other, with one relative saying baldly that “each shift of the nursing home doesn’t seem to know what the other shift knows… There’s not enough communication.”
Not all responses were negative. More than one-third of relatives gave positive reviews to centers and staff, with one relative describing a caregiver as “just great.”
“Anytime we needed him or if there was anything we needed communicated to him, all we had to do was leave a note with the nursing station and he immediately got back… And I mean it was just within minutes, we had a reply,” the relative said.
Still, providers can learn by listening even to the negative reviews, corresponding author Debra Parker Oliver writes for her colleagues.
“This study suggests that nursing homes should embrace the opportunity to involve families in the care-planning process,” Parker Oliver writes in the latest issue of the Journal of the American Medical Directors Association (JAMDA). “This requires that nursing homes create a structure to support [family] involvement, recognize the expertise of family members in decision making, and view feedback from family members as an opportunity to improve care given at the end of life.”
Parker Oliver’s findings jibe with a Canadian study from earlier this year, also published in JAMDA. In that survey, researchers found that nearly one-third of long term care workers viewed their job as “depressing,” and nearly three-quarters cited conflicts with families as a major stressor.
Bill Myers is Provider’s senior editor. Email him at Follow him on Twitter, @ProviderMyers.
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