This week’s Boston Globe featured an article blasting Massachusetts nursing homes for having too many residents on antipsychotic medication, “Nursing home drug use puts many at risk.” It portrayed vulnerable grandmothers as sedated, mute, and drooling, transformed by drugs into tragically diminished versions of their earlier vivacious selves. The headline could have been from the 1970s when Mary Mendelson wrote her muckraking book, “Tender Loving Greed,” pillorying the nursing home industry. Has nothing changed in the last 30 years?
A great deal has changed. In the 1980s, Congress responded to the deplorable state of nursing home care with the Nursing Home Reform Amendments, part of the Omnibus Budget Reconciliation Act of 1987 (OBRA-87).This major piece of legislation sought to make nursing homes free of both physical and chemical restraints. And to a large extent it worked. Translated into regulations in 1991, OBRA-97 led to enormous declines in the use of antipsychotic as well as other “psychoactive” drugs such as benzodiazepines.
Then new, “atypical” antipsychotic medications came along. Touted as equally effective but less toxic, risperidone (Risperdal), olanzapine (Zyprexa), and quetiapine (Seroquel) appeared with growing frequency in nursing homes. Physicians were mandated by OBRA-87 to monitor the use of these drugs—to look for side effects such as Parkinsonian symptoms or drops in blood pressure. They were also supposed to limit prescription of these new drugs, along with other old fashioned or “typical” antipsychotics such as haloperidol (Haldol), to well-defined situations. The drugs were to be used for chronic schizophrenia and for dementia with psychotic features, unresponsive to alternative treatment. As the prevalence of dementia in nursing homes increased, so too did the prevalence of behavior problems: kicking, biting, smearing feces, and screaming. Less dramatic but nonetheless challenging were other behaviors that were also on the increase, such as pacing, wandering into other residents’ rooms, and urinating in trash cans. These behavioral disturbances wee extremely difficult for nursing home staff to manage. Convinced that the new “atypical” antipsychotics were the solution, physicians prescribed more and more of these drugs.
Some residents did improve. Most of them were not transformed into zombies by the medication. But the behavioral symptoms of dementia often come and go without pharmacological intervention. While many physicians were confident they were seeing a benefit of the drugs, others were not so sure. A large randomized trial found that all three of the leading antipsychotics were equally effective in controlling symptoms—and indistinguishable in efficacy from placebo.
Nursing home physicians were skeptical. The study was conducted among outpatients. Maybe long term care residents were different from outpatients—surely they were more demented and had worse symptoms. But at around the same time came other disturbing news: the atypical antipsychotics were associated with a risk of sudden death. The FDA issued a new “black box” warning to physicians prescribing these drugs,followed 3 years later by another black box warning against using the older, “typical” antipsychotics. The drugs were not prohibited, but sober commentators advised prescribing them with great caution, restricting their use to patients with longstanding psychiatric illness and checking an EKG before and after starting the drugs.
In the face of all this bad news, how can it be that a recent study of over 16,000 nursing home admissions found that 29% received at least one antipsychotic over the course of a year? Of these, just about one-third had no identified clinical indication for the drug. Residents admitted to nursing homes with the highest baseline prescribing rates of antipsychotics were 1.37 times more likely than those admitted to nursing homes with the lowest baseline rates to receive a new antipsychotic prescription in the coming year.
Over-use of antipsychotics in the 1970s and 1980s was bad enough. In the intervening years, we have had regulation (OBRA-87), scientific studies of both efficacy and toxicity, and warnings from the FDA. What is going on?
The problem is that agitated behaviors in demented nursing home residents are a major challenge. There is no simple solution. Staff training can help. Increased staff: patient ratios can help. But with the rise of alternative options for care such as assisted living and a decline in the total number of people living in nursing homes, those individuals who do live in a nursing home tend to be more demented and have greater behavioral problems than ever before: in 2007, 69% of US nursing home residents had cognitive impairment, with 42% diagnosed with moderate to severe impairment. Solving the problem of how to care for demented nursing home residents will require far more sweeping changes than adding a few in-service programs for staff or hiring a few more nursing aides. The key is culture change.
To understand the role of culture change, we should look at the use of feeding tubes in nursing home patients with advanced dementia. The feeding tube story is in many ways similar to the antipsychotic medication story: the practice persists despite studies showing that feeding tubes do not prolong life, they do not prevent aspiration pneumonia, and they do not promote healing of pressure ulcers, the reasons given for their use. There is tremendous state-to-state variability in the use of feeding tubes. And while studies have identified a variety of institutional factors associated with feeding tube use (for-profit status of the nursing home, absence of advance care planning discussions, speech therapist on staff), there has been no deep understanding of why the rates vary so dramatically.
In the very same issue of the Archives of Internal Medicine that reported on the national use of antipsychotic drugs in nursing homes, Susan Mitchell and her colleagues presented an ethnographic study of two nursing homes to explore the role of nursing home culture in promoting the use of feeding tubes. In one nursing home, 42% of residents with advanced dementia had feeding tubes while in the other nursing home, only 11% had feeding tubes. The study found startling differences between the cultures of the two institutions. The low use nursing home had a home-like environment, specially trained nursing assistants, and lots of family involvement in decisions of the goals of care. The high-use facility, by contrast, had an institutional atmosphere, inadequately trained nursing assistants, and a focus on regulatory compliance rather than quality of life.
Preliminary evidence suggests that the same nursing homes that foster a culture conducive to hand feeding rather than tube feeding also have a low use of antipsychotic medications. Providence Mount St. Vincent’s , a nursing home in Seattle, Washington that pioneered the culture change model, reported a 100% decrease in the use of antipsychotic medications. If this is confirmed, it will provide compelling evidence that what matters most to nursing home residents, beyond rules and regulations, is designing a community that is patient-centered, where staff are cross-trained to provide multiple tasks, and that focuses on relationships. It is in homes like this that even individuals with advanced dementia may be able to flourish without either feeding tubes or antipsychotic medications.