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 Study: Provider Quality Must Hinge On Relieving Pain, Suffering Of The Dying

Providers should make a pain- and stress-free death “a priority focus for quality improvement,” Canadian researchers argue in a potentially groundbreaking new study.
“Nursing home care is by definition end-of-life care,” a team led by University of Edmonton Faculty of Nursing Professor Carole Estabrooks has concluded, “and new policy should recognize and encourage the important role of nursing homes in determining whether comfort and dignity characterize the prolonged period of dying that is typical of dementia.”
Many providers agree that end-of-life care is an essential service, but the taboo over “the D word” has proven difficult for many caregivers to overcome. Examining the last years of thousands of Canadians in some 36 different care centers over three provinces, Estabrooks and her colleagues suggest that the death taboo is causing needless suffering.
Suboptimal Quality Of Life
“Canadian seniors living in nursing homes, particularly those with dementia, are receiving suboptimal quality of care in the last year of life because treatable, distressing symptoms are not well addressed,” the team writes in the latest issue of the Journal of The American Medical Directors Association. “As a result, these older adults are living and dying with unnecessary pain and suffering.”
Whether residents suffered from dementia or not, those who were dying were more likely to suffer from chronic shortness of breath and pressure ulcers; those with dementia were more like to become aggressive and to wind up on antipsychotic medicines, the researchers say. Even these numbers may be “conservative,” Estabrook writes, because researchers only examined records that covered at least four quarters before the residents died.
For Estabrooks, the suffering of people who are dying isn’t a mere matter of policy changes.
“It goes to the core of the mission and values of individual and group nursing homes, to the core of professional practice, and to the responsibility of providers to ensure that professional and nonprofessional frontline workers have both the necessary knowledge and skills and the conditions under which to use them,” she writes. “Consistent with these things, appropriately managing treatable symptoms should, we argued, be guaranteed.”
Duty As Caregivers
Deborah Meade is chief executive officer for health maintenance at Warren, Robins, in Georgia. She has long been an outspoken advocate for the rights of all to die well.
It is our duty as caregivers, in our efforts to reach person-centered care, to make sure that all our residents are pain-free, period, but especially toward the end of their lives,” Meade tells Provider. “I can’t stand to see residents suffer.”
Still, Meade has some concerns about the way regulators think about pain and suffering.
“The way the question is asked, you’ve got to answer it in black or white,” she says. “We’ve got some residents who are in chronic pain, and so the answer to the question, ‘Are you in pain?’ is always, ‘Yes.’ We rate it on a scale, one to 10, so the question should be, ‘Is the pain being managed?’”
Meade wants to make clear that she has no qualms with Estabrooks’ overarching thesis, and Meade feels that careful training—especially for caregivers of residents with dementia—is essential for all.
“By the sheer definition of dementia, you’re dealing with confusion,” she says. “A resident can’t always tell us, ‘I hurt, and here is where I hurt.’ So we really need vigorous training to make sure that when we see abnormal behavior, we don’t have family and staff reach for the antipsychotics; maybe it’s the pain talking to us. Here at our centers, the first thing we look at when we see elevated behavior is a urinary tract infection.”
Bill Myers is Provider’s senior editor. Email him at Follow him on Twitter, @ProviderMyers.
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