TOPEKA — Experts say powerful antipsychotic drugs — sometimes given in combination — are used too much and often inappropriately as “chemical restraints” or sedatives to control the behavior of Kansas nursing home residents suffering from Alzheimer’s or other dementias, and that efforts to curb the practice so far are showing weak results compared with other states.
“Kansas is pretty far outside the norm, clearly, of what is happening in the rest of the nation,” said Mitzi McFatrich, executive director of Kansas Advocates for Better Care, a Lawrence-based group that champions improved conditions in nursing homes.
Kansas was 47th worst among the states and the District of Columbia in a recent rankings report published by the Centers for Medicare and Medicaid Services, which in 2012 launched a national initiative to reduce the use of antipsychotics for dementia in nursing home residents. The effort came after a 2011 report by the U.S. Department of Health and Human Services Office of Inspector General raised concerns about too frequent “off-label” prescription of the drugs, which can have harmful, sometimes fatal, side effects.
“The black box warning for antipsychotic medication warns of increased risk of death for elders and, in fact, the latest statistics show that up to one in 12 elders taking antipsychotics for dementia will die from the drug,” said Linda Farrar, a nurse and nursing home consultant who is the facilitator for the Kansas Partnership to Improve Dementia Care in Nursing Homes, a statewide coalition formed in response to the problem. “The death certificate would probably actually say heart attack or stroke or infection, usually pneumonia, but the side effects of giving an elder with dementia an antipsychotic are very serious. About 35 percent of elders with dementia getting antipsychotics will become more incontinent.”
Joe Ewert, who heads the nursing home inspection unit at the Kansas Department for Aging and Disability Services, said about 18,000 Kansans reside in nursing homes and that an estimated 38 percent of them “would be considered to have moderate to severe dementia.”
Kansas has more than 300 nursing homes, and the CMS report noted the percentage of residents in each who had received antipsychotic drugs in the last quarter of 2013 or the first quarter of 2014. In a few, the number of “long-stay residents” given the drugs exceeded 90 percent. The percentage exceeded 30 percent in more than 50 facilities, including the Kansas Soldiers Home, a state-run institution in Fort Dodge where 41.1 percent of residents were given the medications.
Farrar and others working to minimize the prescribing say a number of factors have impeded greater progress. But they are optimistic that programs launched by the coalition and now under way will make a difference in the near future.
“I think it’s going to bear fruit. I believe that we will not be ranked 47th forever,” Farrar said.
The coalition includes representatives from the nursing home and pharmacy industries, Kansas and Kansas State universities, state agencies and other organizations.
The group is focusing on better training of nursing home staff and cooperation with the doctors or medical directors employed by the facilities. The Kansas Medical Directors Association is part of the coalition.
Farrar said she believes the chief obstacle to reducing the drug use in Kansas facilities is “limited resources … and that’s all kinds of resources — financial, staffing and training. Staff training is huge. The direct care partners, the people working directly with those elders need to be trained.”
There is no FDA-approved medication that reverses or controls dementia. The antipsychotics are used instead to control aggressive or disruptive behavior of addled residents whose disruptive actions may be prompted by a variety of problems they are experiencing — pain, thirst, fear, soiled clothing — but are unable to constructively communicate because of their diminished mental capacity.
The preferred alternative to doping the patients is close attention from caregivers, but that requires ample staffing and workers who know the resident well enough to respond promptly to sometimes subtle cues in ways that leave the resident soothed.
“It requires consistent staffing, the same people taking care of the same elders every day, and what you end up with becomes a sort of family,” Farrar said.
Direct care workers generally receive minimal training and are paid relatively low wages. Turnover in the industry is high, in part because the jobs are physically and emotionally demanding.
There are other obstacles to decreasing the rates of antipsychotic use and improving the state’s ranking, Farrar and others said.
Typically, doctors hired as medical directors for the nursing facilities write the prescriptions for the antipsychotics. Not all of them want outsiders telling them what orders to write.
“The other barrier we’ve run into is physician resistance, especially in rural Kansas,” Farrar said. “Some physicians get right on board and say, ‘Yes, this is the wrong thing to do,’ and other physicians don’t like direction from any regulator or nurse.”
Ewert at KDADS agreed that doctors have a key role in dealing with the problem.
“We really need a lot of participation with the physicians, the prescribers, to get a handle on this,” he said.
But he, Farrar and others said a number of factors affect the doctors’ decisions to prescribe the drugs. Usually, the doctor writes an order after being contacted by a nurse at a facility who describes problems with a resident.
Farrar said the doctors generally assume that the nurse already has tried all reasonable alternatives to sedation, though that isn’t always the case, and sometimes the nurse is calling merely to report a problem or behavior, not necessarily expecting a prescription.
Ewert said some residents come to the facility with a history of using the antipsychotics and family members become concerned with their behaviors after the drugs are stopped. They then will urge caregivers and doctors to resume the medications.
Ewert said KDADS inspectors try to keep tabs on use of the drugs and can penalize facilities that use them inappropriately. The regulatory efforts are having some positive benefits, Farrar said.
“We’ve done a lot of training on that,” Ewert said. “We’ve spent a considerable amount of time training our staff to work the process (of determining whether the drugs were used appropriately) but also to become experts.”
He said the “quality” rather than the “number” of staff at a facility seems to be a greater factor in reducing reliance on the medications.
He and Farrar said Kansas has a number of nursing homes that have been “pioneers” in the so-called “culture-change movement” within the industry and that they have shown success in minimizing use of the drugs.
“They got it by making smaller units and dedicating staff to those units so that staff are working with the same people (residents) every day, and by virtue of that arrangement they know the residents better and are much better equipped and able to intervene to keep some of these issues from ever becoming a problem,” he said.
KDADS supports the work of the coalition, Ewert said, noting that agency regulators — due to the nature of their role in the system — must rely “mostly on sticks” rather than “carrots” to shape practices and conditions at nursing homes.