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GRAY MATTERS: Nursing Homes and Drugs

SaulFriedman75x75 Pulitzer Prize-winning journalist Saul Friedman (bio) writes the weekly Gray Matters column which appears here each Saturday. Links to past Gray Matters columns can be found here. Saul's Reflections column, in which he comments on news, politics and social issues from his perspective as one of the younger members of the greatest generation, also appears at Time Goes By twice each month.

If you have a friend or a loved one in a nursing home, you should be aware of one of the more insidious practices facing many residents. They can save the nursing home money but they rob patients of what remains of their spirit, dignity and independence.

It’s not easy for residents, especially newcomers, to come to terms with being in a nursing home, especially if they are relatively healthy, ambulatory and generally of sound mind. But if they’re restless, troubled and a bit depressed (and who wouldn’t be), too many nursing homes will take measures that can be debilitating.

Instead of helping unsteady residents go to the restroom when they need to, attendants often will fit them with diapers as a matter of routine because there’s not enough staff to tend to every resident’s needs when they need to go to the toilet quickly. And staff members don’t want to be blamed for a fall.

Worse, if an elderly patient who is rebelling against being in the home and its restrictions or rules, or is unruly, the staff may get a doctor to prescribe a sedative. Only the worst of homes will use physical restraints which are forbidden by law, but more often – too often – nursing homes are resorting to anti-psychotic drugs for residents who are not psychotic but suffering from dementia, anxiety or a show of anger and impatience with being confined.

In January 2007, according to the Center for Medicare Advocacy, a nursing home ombudsman reported to the California Health Department that a resident at a skilled nursing facility had been held down and forcibly injected with an anti-psychotic drug. The patient was not psychotic, but suffering from dementia and Alzheimer’s disease. An investigation, said the Center,

“determined that 22 patients, including some who were suffering from Alzheimer’s...were being given high doses of psychotropic medication not for therapeutic reasons but to simply control them for the convenience of the staff.”

This investigation, which may include criminal prosecutions, is still underway, but the problem persists elsewhere.

The Boston Globe reported on March 8 that 2,500 nursing home residents in Massachusetts were given “powerful anti-psychotic drugs last year that were not intended or recommended for their medical condition.” The drugs were intended and licensed by the Food and Drug Administration for people with severe and diagnosed mental illnesses such as schizophrenia or bipolar disorder.

But the FDA has sought to discourage the use of these drugs for dementia, a gradual loss of memory or anxiety, by issuing what is known as “black box” warnings on the inappropriate uses for the drugs. But warnings are often ignored by doctors who serve nursing homes and are not usually available, or by short-handed nurses and poorly paid or trained attendants who tend to too many demanding patients.

Toby Edelman, a senior attorney for the Center told me, “Anti-psychotic drugs are used because there’s not enough staff and facilities. They know they shouldn’t use physical restraints. Using drugs inappropriately as chemical restraints is less visible, but has the same effect.”

“The misuse of anti-psychotic medications in the treatment or control of nursing home residents is pervasive,” said the Center. “In the fourth quarter of 2009, the federal government reports that 26 percent of the nation’s 1.4 million nursing home residents –354,900 people – received anti-psychotic drugs...frequently for reasons not approved by the FDA.“

In February, 2007, Dr. David Graham, an FDA official, told a congressional committee that as many as “15,000 elderly people in nursing homes (are) dying each year from the off-label (not FDA approved) use of anti-psychotic medications for an indication that FDA knows the drug doesn’t work.”

The drugs include Seroquel, Risperdal and Zyprexa, which replaced an older drug, Haldol. The use of these chemical restraints is not all the fault of besieged nurses and aides. Last November, Omnicare, the nation;’s largest nursing home pharmacy agreed to pay $98 million and its supplier-drug manufacture paid $14 million because of a kickback scheme involving Johnson & Johnson’s drug Risperdal. The scheme allowed Johnson & Johnson to push the sale and use of the drug.

On March 10, Bloomberg News reported that despite the FDA warnings on the possible misuse of Risperdal, the largest selling drug of its kind, Johnson & Johnson made plans to reach $302 million in geriatric sales of the drug for this year claiming it was safe and effective. According to Bloomberg, unsealed documents in a lawsuit by Louisiana against the company disclosed “a J&J business plan...called for increasing the drug’s market share for elderly dementia sales, an unapproved use.”

In January 2009, Eli Lilly agreed to pay fines of $1.4 billion for illegally pushing the sales and off-brand use of its anti-psychotic drug, Zyprexa. According to the U.S. Justice Department, the company promoted the use of Zyprexa by claiming it would help facilities sedate resident who would otherwise require more care.

Nursing homes are handsomely paid by Medicaid, long term care insurance or by the resident. Numerous studies have found that residents get better care in not-for profit homes.

With these drugs at hand, physicians are often unaware of the possible side effects on people who are not psychotic. But then, the Center notes, physicians who are supposed to supervise patients often prescribe without seeing them.

Psychiatrists are rarely available except for the most troubled residents. Edelman said that nursing home and the long term care pharmacies rely on “chart orders” left by doctors when they are unavailable.

“Physicians are present in nursing homes only intermittently,” Edelman said, They do not have offices, they work out of their cars.”

The Center and other patient advocates seek federal legislation to enforce existing law requiring that a physician be on call and available when a patient requires prescription drugs.

Nursing homes and pharmacies argue that if federal law is not amended to allow “chart orders,” residents will not get pain medications they need. But anti-psychotic drugs are not mere pain killers. They can turn an anxious or slightly depressed or forgetful patient into a zombie.

And the easy access to painkillers can tempt staff members into overusing or even stealing them for their own use. That’s why the Drug Enforcement Agency has been involved in the effort to reduce the availability and use of these drugs on unsuspecting patients.

Said Edelman, the Center’s concern “speaks to the dangers of indiscriminate use of pain medications and the lack of physicians to detect and respond to life-threatening problems involving their use.”

Got a friend or loved one in a nursing home? If he or she is asleep most of the time or non-responsive, demand to know the drug that’s been used and question why. If there is no satisfactory answer, complain to the home’s ombudsman or contact the Center for Medicare Advocacy.

Or write to


The CA and MA cases are horrendous! The 2005 black box warnings were very specific: "In April 2005, the FDA issued "black box" warnings against prescribing atypical antipsychotic drugs for patients with dementia, cautioning that the drugs increased dementia patients' mortality. In June 2008, the FDA extended its warning to all categories of antipsychotic drugs, conventional as well as atypical, and directly and unequivocally advised health care professionals, 'Antipsychotics are not indicated for the treatment of dementia-related psychosis.'"

We need more primary care physicians, psychiatrists, and gerontologists willing to devote their practices to skilled nursing and dementia care facilities as their populations soar over the next twenty years. With cuts to Medicare and Medicaid benefits looming, I can't see that happening anytime soon.

As the California lawsuit implies, at least in some states (including my own), drugging residents as a means of restraint is just as illegal as using physical restraints. Although the skilled nursing home for which I served as a state long-term care ombudsman was not a high-dollar facility, I never observed improper use of medications or physical restraints. (And I visited the facility, unannounced, at all times of day/night - including between Midnight and 4:00 AM. An ombudsman must be vigilant.)

At the risk of having Ronni slap my hand for improper use of her audience, I would strongly encourage anyone who can volunteer a few hours each week, who has reliable transportation, and who can cope with a small amount of record-keeping to become a state long-term care ombudsman. The good you can do is great...the rewards enormous! (One of our better ombudsmen was a resident of an independent living facility that was physically and legally connected to the skilled nursing home in which she served.)

This is certainly an area where activism and change are sorely needed. Two positive things I know of: Dr. Bill Thomas' Eden Alternative model for nursing homes and the Namaste approach for caring for late stage Alzheimer's clients. Both are person-centered, and focus on engagement, quality of life and dignity, not drugs.

Be very careful what you wish for. In reality, the alternatives to diapers is not prompt toileting but somebody you love developing bedsores from sitting in urine or feces. And a bedsore can kill you. The alternative to restraints may be constant falling--my mother didn't know she couldn't stand up without falling over. Or it could be that your loved one will be attacked by someone who should be restrained, chemically or otherwise, but isn't. And at the time my mother was in a nursing home, Seroquel was a drug of choice in the Parkinson's disease community, outside of the nursing home.

Please understand - I'm not arguing that diapers or restraints--or PEG tube feeding, for that matter, which is another method for cutting down the time/staff needed to care for patients--are an ideal solution. But, in the absence of the ideal solution--money and staff and the will to care for America's sick--it's important not to demand reforms that may do more harm than good.

Let's face it; a nursing home is the last place any of us want to end up. I can't speak for all nursing homes, but the two I am familiar with made me dread the day that I may have to enter one. Even if the staff are caring, they are always short handed and can't tend to the patient's individual needs.

To add to the unpleasant condition are the patient's themselves. It is not enjoyable seeing elders sitting in their wheelchairs with nodding heads or hearing the laments of the demented.

I named the nursing home my husband was in the last few months of his life "The Snake Pit". I dreaded walking in the front door because of the odor. They used some chemical to cover the odor of urine (and worse) and it gagged me. His doctor would not visit him there because of it. One demented woman cried with every breath, "Help." Perhaps she would have been better off being sedated.

I agree that the use of restraints or drugs for the convenience of the staff is wrong, but Mary Jamison makes a good point.

I think we should all start demanding that Medicare pay for 'in home nursing' and do away with warehousing the elderly. It would be cheaper and more humane to keep elders in their own homes.

I am a psychologist working exclusively in nursing homes. I want to put in a plug for counseling on some of the behavioral issues you bring up. I am often called in when patients are having adjustment issues or "behavioral problems." Medicare pays for two kinds of psychological services. One relates to patients who have no previous psychological issues but are adjusting to a new diagnosis or a setting necessitated by a new diagnosis. We do not give a psychological diagnosis for these patients. This form of treatment requires consultation with the medical and social work team and is usually short-term. The other is counseling for people who do have/have had a psychological issue. As you have pointed out, these problems can be exacerbated by nursing home placement or dynamics.

Our services are very helpful to patients in most cases and often result in medications being lowered or not needing to be used at all.

Trying to take care of an elder with dementia at home has it's own severe problems. I guest-blogged about my mother's situation here at TGB back in June of 09. My mother is 94 with dementia and assorted physical non-terminal medical problems. She has no sleep schedule and spends almost every waking hour trying to walk around (and she is not that stable on her feet) vocalizing strange whining sounds or strange gibberish. Occasionally she has lucid moments, but these are few.

She lives with my brother, and I drive a couple of hundred miles (each way) once a month to relieve him for a week at a time. No matter what we do or what meds she has tried, she seems to be constantly in mental and physical discomfort – even pain – and she is unable to communicate the source. The one saving grace is that she is still continent and we have learned to tell when she has to go to the bathroom.

She is 94 with no discernible quality of life. My brother is 60 and totally burned out (even bringing in occasional help), developing health issues of his own. He has begun sleeping in the same room as she so that she is never without oversight. We don't want her in a nursing home, for all the reasons cited in this post.

It seems to me that what she needs is a “feel good” drug like medical marijuana to take the edge off the purgatory that she is living in, but she lives in New York State, and it's not legal. At her age, she deserves more “contentment” than she has, and we are at a loss as to how to make that happen. She has tried just about every drug available (even anti-psychotics) and none of them work. The answer to her plight seems so simple. But it's illegal.

Everything I've read here scares the hell outta me.

I've told my son to begin learning the art of growing poppies as I read somewhere that opium is what the ancient Chinese would use to calm their elders. He does not garden and he is law abiding. I am doomed.

I do not like hanging out with any people NOW and I'd bet even if I was disengaged from my wits and un-moored from my senses, I would not be liking people wandering around me screaming and moaning - The "warehousing our elderly" that Darlene speaks of hits the nail on the head! That is exactly what we are doing. It is wrong. We can and must come up with a better idea. We can talk about the improvement in care when we have talked about the need for dignity. There is none for anyone - caregiver or care recipient- in this kind of environment.

I'm with Kay.

Just to offer some contrast to the dark side of nursing homes described above, there are excellent nursing homes that provide very good care (including the Eden Alternative homes mentioned above of course and nursing homes adopting Culture Change).

And there are also PACE programs (Programs of All-Inclusive Care for the Elderly) that provide a nursing home level of care for people living at home. My father and mother were both in a PACE program and my mother at the end of her life had to be in nursing home -- but for the most part and with few exceptions they received excellent care.

You need to do your homework to find the good homes and/or good community services -- they do exist! Visit your local Area Agency on Aging for information!

Also, good nursing homes, especially the good not-for-profit nursing homes, in most states are not adequately reimbursed by Medicaid and only survive financially by charging private pay patients a higher daily rate in order to cover their costs.

Maybe we should start an opium growing support group? I live in California which will probably declare marijuana legal fairly soon - can growing poppies for medical purposes be far behind?

Mom was in a nursing home for six years, and by the end of the whole affair, I'd lost my fear of nursing homes. Some wise nurse wrote an article that impressed me many many years before Mom got sick. The nurse said that what we dislike about nursing homes isn't the nursing home but the condition of the people in it: the smell, the vacancy, the general decrepitude.

By the time Mom died, I'd gotten past that. I believe that she was cared for as well in the NH as she would have been anywhere else. And I came to learn that, despite even the most severe stages of some dreadful diseases, people are still people. I came to believe that human dignity is inalienable.

Yes, I'm biased, but I agree that residents are more likely to get better care in not-for-profit nursing homes, mainly because many not-for-profit homes see themselves as ministries, not businesses, and they expect a sense of ministry from all their staff.

Good nursing homes that offer quality care from compassionate staff do exist. When you're doing your research, look for homes that are accredited by the Joint Commission and belong to some sort of "Quality First" program.

My mom has dementia but lived at home with assistance from a part-time sitter & her children. We mainly brought in meals & helped w/housework & laundry. She fell several times & entered a nursing home where we thought she'd be better monitored. What a joke. They immediately gave drugs that made her even more unsteady. She fell frequently until one fall resulted in serious brain injuries.Three months after entering the home, my mom is an invalid completely dependent on others. They ignore the call button so she screams for assistance, which results in her being sedated. She is sleeping all day. We have talked to the administrator, doctor & nurse manager repeatedly & we are considered difficult & complaining. If we get a psychotropic drug discontinued, they add another, usually without telling us despite our demands to know. We pay about $6000 per mo for this "care". One or more of the children or a sitter must be with her or she is drugged. She gets no exercise, just sits in a chair or bed & now can barely move. She is continent, but due to not standing well they make her use diapers. The drugs have affect her breathing, swallowing,& appetite. The whole experience is wretched. Now that she's in such bad condition & screams, we are having trouble finding a decent home. I hope we can get her out before they kill her.People should be told what nursing homes are really like.

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