Wagner, 78, has Lewy Body Dementia and Parkinson’s disease. But his wife, Charlene, said it’s hard to tell how much of his lethargy is due to that and how much is due to the anti-psychotic medications he was first given during an extended hospital stay and has continued taking in nursing homes.
“I’ve seen a change since he went to the nursing homes,” Charlene Wagner said. “Not because of the care. The care is good. I believe it’s the medicines.”
Anti-psychotics are contraindicated for people with dementia and include a U.S. Food and Drug Administration warning that they increase the risk of falls, stroke and other potentially fatal side effects.
The federal government started tracking the off-label use of such medications in nursing homes in 2011. Since then, Kansas has always ranked at or near the top in percentage of medicated residents, suggesting there are thousands of residents in the state’s certified nursing facilities who have been given drugs that aren’t medically indicated for them, and could actually harm them.
“There’s something about that dementia coupled with the anti-psychotics,” said Margaret Farley, a board member for Kansas Advocates for Better Care, a group that represents nursing home residents. “This is not just us saying, ‘Gee, that’s not very good, you’re robbing them of their personality, they won’t talk, they’re not active, etc, etc.’ This is hardcore. This is a 1.6 to 1.7 times increase in deaths that most of the time is related to cardiovascular changes or it’s related to the development of pneumonia.”
Kansas also led the nation last year in percentage of skilled nursing facilities cited by the federal government for a broad slate of medication-related violations, some of which relate to anti-psychotic use.
Kathy Greenlee, a former Kansas Secretary of Aging who was appointed to U.S. Assistant Secretary of Aging under President Barack Obama, said the overuse of anti-psychotics is an unintended consequence of removing physical restraints from nursing homes in the 1980s and 1990s.
Now when people visit nursing homes they’ll no longer see residents strapped to beds and wheelchairs. But they will likely see some under “chemical restraint,” through the use of anti-psychotic medications like Haldol and Seroquel, which Charlene Wagner said have caused her husband to deteriorate.
Greenlee said she knows Kansas nursing homes are not the worst in the nation overall. But the rate at which they use anti-psychotics should cause some soul-searching about how they deal with difficult or disruptive behavior of residents with dementia.
“They can be overprescribed to sedate people and then mask the need to deal with these underlying causes (of disruptive behavior),” said Greenlee, who is now vice president of aging and health policy for the Center for Practical Bioethics in Kansas City, Mo.
Groups that represent Kansas nursing homes say the state’s anti-psychotic use ranking is unfairly skewed by a handful of homes that specialize in mental illness and that they face a number of challenges that are outside their control.
It’s hard to find enough qualified staff in many parts of the state. Some facilities rely heavily on Kansas Medicaid and payments under that program have been delayed for years due to bureaucratic changes. There’s also a shortage of psychiatrists in Kansas, especially those who specialize in treating older people.
“All of those I believe do factor into our ability to continue to really tackle this issue,” said Debra Zehr, the president and CEO of LeadingAge Kansas.
Cindy Luxem, the president and CEO of the Kansas Health Care Association, said Kansas homes have brought rates down, but they need help to reduce them further.
“We’re going to take a lot of responsibility on this topic, but at the same time we look at it as something where we really better start getting family members involved,” Luxem said. “Physicians, pharmacists, you name it.”
Zehr said that when doctors and nursing home workers use anti-psychotics on people who don’t have a mental illness, it’s not ideal, but it’s done with good intentions.
“Anybody who’s spent time with people in the throes of dementia and has seen the kind of internal anguish and volatile behaviors of people with dementia at certain stages, they’re trying to help,” Zehr said.
But some facilities have found better ways to handle those behaviors. Farley said more should follow their example.
“It’s not an easy thing to be able to take care of bad behaviors without these medications, but we’ve become far too dependent upon them,” Farley said.
The fight over the rankings
On average, 20 percent of all Kansas long-term nursing home residents received an anti-psychotic medication at some point in 2016, tying it for the highest rate in the country with Oklahoma and Mississippi. The national average is 16 percent. Missouri ranked near the top at about 19 percent.
Kansas has dropped from a high of about 26 percent in 2011, but other states’ rates have fallen more since then. (Click to Continue)
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Kansas nursing homes have ‘become far too dependent’ on mind-altering meds