Warning

This is written as a public service to residents of nursing homes and long term care facilities. It is a warning about the administration of psychotropic medication and the filing of Power of Attorney.

Following my letter, is some information taken from a Chicago Tribune story about human research abuse.
It is something everyone should read.  To go directly to the story—scroll down to “Chicago Tribune.”

My mother died in January, 1997, after spending four years in the Lieberman Geriatric Health Center, 9700 Gross Point Road, Skokie, IL 60077. She entered the facility because she was displaying the classic symptoms of Alzheimer's disease.  The Lieberman Geriatric Health Center is considered one of the best such facilities in the area and in most respects we agree that my mother received quality care.

The family visited often; someone was there almost every day. During her last 12 to 18 months my mother never opened her eyes or appeared to be awake. We repeatedly questioned the staff about this, asking if mother was receiving sedatives. We were assured she only received a very mild sedative at night. In fact, the staff person would open my mother's file and say, "no, no other sedatives."

A few months before my mother died I received a letter from Lieberman Geriatric Health Center requesting that permission be given for my mother to participate in a drug therapy study. The letter said I would be called for this permission. When the doctor called me I said "NO." He literally begged me to let her participate but I still said no.

Two weeks before my mother died I happened to meet the social worker at the Lieberman Geriatric Health Center. Again, I asked why my mother was always asleep and was she given sedatives. The social worker opened my mother's file and began reading me a list of the psychotropic drugs my mother had been given for the past year.  I asked if one of them was the experimental drug I had been called about and she said yes, but it had been discontinued because someone had suffered heart failure because of it.

My anger was apparent and the social worker said, "oh now we understand and we will discontinue the drugs."

The next week when I visited my mother, her eyes were open; she smiled, said I looked wonderful and kissed me. The following week she also smiled at me and kissed me. One-half hour later she died.

Needless to say we were devastated by this.

Not knowing what to do I wrote my state representative asking that a law be introduced requiring that nursing homes must tell the families when psychotropic drugs are administered. I wanted to make sure that this never happened to another family and to give both my mother's and my family's pain some meaning. There are laws that require the family be informed every time a patient falls or has some other mishap. And the Lieberman people always called about those situations. They never, never called to discuss drugs.

Because my state representative took some time to answer me I went to our public library and looked up the state codes. Here is what I found. Drug treatment, 45/2-106.1 (b) Psychotropic medication shall not be prescribed without the informed consent of the resident, the resident's guardian, or other authorized representative... The law was already on the books; Lieberman Geriatric Health Center, in their arrogance, chose to ignore it.

My next step was to complain to the Illinois Department of Health, who at first found that the Lieberman Geriatric Health Center had committed violations with regard to the administration of psychotropic medication. They found no documentation in my mother's records that anyone in the family had ever been told. Lieberman Geriatric Health Center was requested to correct this violation--nothing more. They protested these findings and the Dept. of Health reversed its decision.

This leads me to my second warning and reason for writing this. I had my mother's Power of Attorney, but I never put it in her file. The Dept. of Health said if there was no Power of Attorney, Lieberman Geriatric Health Center could simply follow the doctor's prescribed medications and not tell the family.

If that is the law, so be it. But why did the staff at Lieberman Geriatric Health Center call me for everything else when permission was needed, e.g. admission to the hospital when necessary. And why did they continually lie to me when I asked about the drugs? People lie for a reason--usually when they know they are doing something wrong.

If you think your loved-one is being sedated, look in their files yourself--don't believe what the "friendly" staff tells you. Make sure you have a Power of Attorney form in the file.

I will never get over thinking I let my mother down. But it will help if this warning saves others from the same heartache.

The Council For Jewish Elderly is the parent organization of the Lieberman Geriatric Health Center and through their attorney has requested that I make it perfectly clear that they are not the origin or sponsor of this letter, nor do they approve of its content. (I cannot imagine how anyone would think otherwise.) I am the author of this letter; it is truthful and can be fully documented.

If you have had a similar experience, wish to share information about such long term facilities or link this site to yours, please e-mail me. Perhaps together we can make a difference.


thesweetows@gmail.com


Roberta Sweetow


Chicago Tribune, September 5, 1999, Staff Writers Michael Berens and Jeremy Manier

(The article is quite long; I am quoting what I believe are some of the most compelling facts.)

"Even as the University of Illinois at Chicago labors to correct problems that have suspended human research at the school, unprecedented growth in experiments using human subjects nationwide has created a rush for volunteers that touches every segment of the American medical system.

At financially strapped research universities such as UIC, multimillion-dollar clinical studies form the foundation of school budgets, providing incentives to push ahead with projects despite potential risks.

But the collision of money and medicine also has come to influence everyday medical care in ways that few patients may suspect, rewarding doctors with bonuses for every patient they persuade to enroll in a study.

The pace of recruitment has become so competitive that Illinois doctors are receiving retainer fees from for-profit research laboratories for access to all their future patients.

...To be sure, human research has benefited countless patients by yielding life-saving techniques and medications. But the demand for speedy results by pharmaceutical firms has created a potential conflict of interest for doctors, tempting them to choose financial gain over patients' best interests.

...The unchecked rush for patients is not limited to universities. From emergency rooms to family doctors' offices, potential volunteers are being scouted through computerized medical records.

...Aside from the scholarly prestige that comes from conducting research, doctors stand to personally profit--as long as they can supply the patients.

As an inducement, pharmaceutical firms often offer cash bonuses of up to $7,500 for every patient a doctor refers to a study. Other perks abound for doctors, including free vacations, lucrative consulting work and credit for publication in scholarly journals--with articles actually penned by employees of pharmaceutical companies, according to interviews with doctors and research executives.

...Doctors are neither legally nor ethically required to tell patients about their financial interest in a study.

...Much like baseball players judged by their batting statistics, doctors are tracked by enrollment ratios. Drugmakers typically award their biggest grants to doctors with access to the most patients...

Many for-profit research companies--known as site-management organizations--are paying doctors up to $10,000 for the rights to patient rosters...

Federal probers found that some elderly residents of Beverly, Washington Heights and Morgan Park (IL) were stalked, harassed and coerced into participation."