Allen Wagner used to light up when his granddaughter entered the room, but when she visits him at his nursing home in Overland Park now, he hardly reacts. He’s sleepy and uncommunicative.
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.
Was your nursing home cited for improper use of medications? Find out here.
Nursing homes groups say Kansas can’t be compared to other states because it has nine designated Nursing Facilities for Mental Health, that specialize in caring for mental health patients of any age. Those facilities make up nine of the top 10 homes in Kansas for use of anti-psychotic medications. One of them, Eskridge Care & Rehabilitation Center in Eskridge, Kan., had 100 percent of its long-term residents receive anti-psychotics at least once during 2016, according to federal data.
Take out those facilities and Rachel Monger, the vice president for government affairs at LeadingAge Kansas, said the state’s ranking would improve from 51st in the country to 42nd.
“A ranking of 42 is nothing to jump up and down about, but it is proof that our nursing homes have made steady and significant progress in reducing anti-psychotic use, including in relation to other states,” said Monger, whose group represents non-profit nursing facilities.
Monger also said Kansas’ top ranking in percentage of homes cited under federal medication rules should be taken with a grain of salt.
In 2016, 56 percent of Kansas’ 339 nursing homes received such citations, which can include failing to document a clinical reason for the medication, inadequately monitoring the effects of medications or giving excessive dosages. Nationally, the rate was 22 percent, according to a Star analysis of Medicare data. In Missouri it was 11 percent, which ranked 40th in the nation.
But Monger said most of those citations are not related to overuse of anti-psychotics. She also said that Kansas homes tend to be cited more because the state has a different method than most others for doing nursing home inspections, or surveys.
“It uses a much more systematic approach to looking for and at survey deficiencies, and consistently leads to a higher number of citations in the states who use it,” Monger said.
She said under new federal rules all the states will move to a uniform system starting Nov. 28, and that should even out some of the disparities.
The other Kansas facility in the state’s top 10, Protection Valley Manor, had about 72 percent of its residents on an anti-psychotic in 2016. But Monger said that home is also unique because it is one of the few in the state willing to take in residents after they’re discharged from Larned State Hospital, a mental health facility.
Shannon Lager, the chief operations officer for a nursing home chain called Medicalodges that has 21 facilities in Kansas, said the federal data shouldn’t be used to compare one facility to another because of those kind of differences in the populations individual homes serve.
“If you’re looking across the entire state of Kansas, you can see if (the rate of anti-psychotic use) is going up or it’s going down,” Lager said. “If you are looking at specific facilities you have to do some further research.”
The federal anti-psychotic use rate data excludes residents who have a specific diagnosis of schizophrenia, Tourette syndrome or Huntington’s disease, because anti-psychotics are indicated for those conditions.
But Monger said it’s still capturing too many residents who could be getting an anti-psychotic medication for a legitimate medical reason.
“Mental illness is difficult to diagnose, even more so for people who have been in and out of treatment, and are unable to accurately communicate their symptoms and illness history,” Monger said. “Therefore, doctors assign them a more general psychosis diagnosis, which of course does not fall under the CMS (federal) exclusion list.”
Lager said nursing homes have become an overused last resort in a strained mental health system.
“In Kansas our access to mental health in general is very bad,” Lager said. “Years and years ago Kansas had more facilities for the mentally ill. We don’t have those any more.”
After years of lobbying to reduce the need for anti-psychotics by increasing nursing home staffing requirements, Kansas Advocates for Better Care is now taking a different tack: urging nursing home residents to assert their legal rights to not be medicated.
At a conference in Mission in September KABC officials handed out forms titled “Informed Consent for Medication.”
The forms allow people to designate a representative for their health care decisions if they can’t make them themselves, and provide a list of medications they’d rather not be given. It also allows them to provide a list of alternatives to try before anti-psychotics, like behavior intervention techniques and music therapy.
Mitzi McFatrich, the executive director of KABC, said the idea is simple: allow elders in nursing homes and their loved ones the same level of control over what medications they take as people with mental illness or developmental disabilities get. That is, they aren’t medicated against their will unless they’re an immediate danger to themselves or others.
“I get to choose whether or not I’m willing to take the risks of death from falls or all those other things, in order to improve my quality of life,” McFatrich said. “And if it’s not going to improve the quality of my life or the quality of life of somebody I love, I’m probably not going to do it. It’s probably not worth it.”
Luxem, whose organization represents for-profit and non-profit homes, said that won’t help in situations where family members are the source of the over-medication problem.
Luxem said nursing homes are put between a rock and a hard place when the drive to reduce anti-psychotic use butts up against the wishes of loved ones.
“Family members want to see their folks happy, their folks calm,” Luxem said. “And if they come in and see mom’s behavior as something less than what they see as calm and comforting the family members are going to be the first to say, ‘Give them something.’”
Likewise, Luxem said doctors and nurse practitioners with prescribing authority can be too quick to order up medications.
Every nursing home is required to designate a physician medical director to ensure the facility’s residents receive a certain standard of care. But residents are also allowed to continue seeing their own physicians and facilities have little say over what drug regimens those doctors may prescribe.
Luxem said studies have shown that only 1 to 2 percent of nursing home residents get a new prescription from a facility medical director in their first three months. But many come into nursing facilities already on an anti-psychotic that was prescribed at a hospital.
Wagner said that was the case with her husband, who was first given anti-psychotics in a hospital while she was looking for a nursing home that would take him as his Medicaid application took months to process.
She said he spent some time at a nursing home in Oskaloosa, Kan., that kept him on heavy doses of it. Since moving to his current residence, Garden Terrace at Overland Park, his dosage has been reduced and Wagner said she had a meeting with staff there this week about reducing it more.
She said the staff members want to do that, but have to see what the doctor says.
“I was thinking to myself, that would be fine, but if he doesn’t agree, I’m still going to push that they decrease it,” Wagner said. “Personally, I want to see how it affects him if he doesn’t have as much of that medicine in him.”
Lager said nursing facilities need to be careful about unintended consequences of taking residents off anti-psychotics too quickly. That’s complicated by Kansas’ shortage of the medical providers who have the most education about the drugs: psychiatrists.
“I will tell you it is extraordinarily difficult to find psychiatrists that are willing to come into your facility to see your patient,” Lager said.
Janell Wohler is the administrator in charge of the Linn Community Nursing Home. Under her leadership, that facility has nearly eliminated its use of anti-psychotic drugs and she’s become a sort of unofficial consultant for other nursing homes in the state looking to reduce their rates.
She said it’s an uphill slog.
“I’m going to tell you what I feel in my heart,” Wohler said. “I feel that the medical community, meaning the doctors, the nurse practitioners that are prescribing these drugs, aren’t getting it.”
“They give the orders and we’re just supposed to give them to these people. I don’t think they see the benefit of helping them with behaviors and helping them with non-pharmaceutical alternatives. They just want to give a pill.”
Farley said that when it comes to people with dementia, that’s almost always the wrong approach.
“I’m going to go as far as saying 95 percent of the time at least you can do something other than giving someone this type of medication,” Farley said. “And frankly I would go all the way and say it’s never the right medication and I’ll take all the calls from the physicians and nurses.”
Wohler, who has become an ambassador for alternative methods of dealing with difficult dementia patients, said other nursing home administrators could be more proactive about learning those methods.
Her 60-bed, non-profit home in rural north-central Kansas was an early adopter of the Music and Memory program, which relies on research that shows music can tap into deep memories and help soothe residents suffering from dementia.
It has also become a test site for a new virtual reality system that seeks to do the same.
That opportunity came after a presentation Wohler and a colleague gave at the end of February in Manhattan, at a conference of Kansas nursing home administrators.
They laid out the improvements Linn Community Nursing Home had made in reducing anti-psychotic use and challenged their counterparts at other homes to do the same. They even offered to help show them how.
“Honestly, we got no feedback from that,” Wohler said. “Zero.”
Wohler said LeadingAge Kansas set up a conference call with her and some of their other members, but there’s been little follow-up. She said she and a co-worker tried using the federal data to identify the highest users of off-label anti-psychotics and counsel them one-on-one.
“We split those people up and we called them to touch base and say ‘How can we help?’” Wohler said. “And got not a great response, truthfully.”
Zehr said LeadingAge is still working to get more of its members in touch with Wohler to try to emulate Linn Community Nursing Home and Wohler will make a presentation at the group’s annual conference.
Like Luxem, Wohler said she believes the complacency is symptomatic of a larger society that is “very apt to pop a pill before dealing with the problem at hand.” She said that might be easier than trying to address the underlying causes of bad behavior in people with dementia.
But it’s not worth the risk.
“The consequences are out there,” Wohler said. “If you read the (FDA) warnings on these drugs, it will blow your mind.”
Greenlee said it will likely take a coalition of groups from the medical community, nursing homes and government led by someone willing to champion the cause to improve the rankings of both Kansas and Missouri.
With major demographic changes coming, she said that effort best start soon.
“We will have increased numbers of people with dementia and Alzheimer’s,” Greenlee said.
“This will not go away. To overmedicate an entire future generation of older people is problemtic. We have to keep working on this issue. We can’t lay it down.”