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years or more would not visit them there. And I wonder why and could not there be something done about this.

Much of the time from October of 1979 through March of 1980 my father was very heavily sedated, falling on at least two occasions, once cracking two ribs and the second time cutting his head and requiring several stitches. All during this time the doctor was very noncommunicative, refusing to let us have any part of our father's care, and obviously resentful of having his judgment and actions questioned.

On Sunday, March 23, my husband and I visited our parents and found my father sedated to the point that he could not raise himself from the bed. His speech slurred to the point that I could barely understand him.

The following evening I called him on the phone and found him completely unable to talk. It should be kept in mind that up until his admission to this nursing home and the subsequent increase in medication, my father was completely mobile, able to visit his children's homes on the weekends, able to take care of his own needs, and in good general health for his age.

After discovering my father's degenerated condition, I immediately phoned my brother who did not seem to be too alarmed. The next morning by 8 a.m. I was in the home hoping to have my father released and moved into Peachford Hospital in Atlanta. Peachford is the top center in our area for the treatment of alcohol and drug addiction.

I was able to make the arrangements with Peachford Hospital for the admission and care of my father, but upon trying to get him out of the Gainesville Care Center found myself facing a roadblock.

After explaining my wishes to the administrator and director of nurses, they told me that my father was not overly sedated. At this point I asked the reason for the falls? Why was he unable to speak audibly? In short, why was he now immobile? They had no answer and asked me to leave. When I refused, the administrator threatened to have me removed.

He told me also that he had talked to my brother that day who had requested him not to release my father.

At this time I began to question my own legality as to what exactly were my rights as far as my father was concerned. As a matter of fact, I could not do any more. After returning home I called my sister and told her all that had happened that day and that it appeared there was nothing left that I could do.

I firmly believe the Biblical verse that says, “God works in mysterious ways, his wonders to perform." The morning after learning of my father's plight and unsuccessful attempt to secure help for him, my sister woke at 3 a.m. and made the decision to go get my father from the nursing home and take him home with her.

From there we carried him to her family physician and he could not get a true blood pressure reading on him because of the drugs that he had in his system. And my father came off of the drugs without anything unless it was an aspirin or an Excedrin or something very mild, something over-the-counter prescribed.

I would like to take this opportunity in closing to say that we have made rapid advances in the field of medicine. We have wonderful facilities for the care of elderly, and we have great institutions for training some of the world's best physicians, but unless the doctor and the patient or whoever is responsible for the patient has better communications, then this is not any good.

Thank you.

The CHAIRMAN. Thank you very much, Mrs. Summer.

I am sorry, but you have noticed there is a vote on the floor. We will have to take a temporary recess so we can run over and vote and be right back.

[A short recess was taken.]
The CHAIRMAN. The committee will come to order, please.

We now have with us one of our distinguished members, Mr. Ed Roybal of California. Mr. Roybal, would you like to make a statement? I have already submitted your prepared remarks for the record.

Mr. ROYBAL. Thank you, Mr. Chairman, I have no further remarks.

The CHAIRMAN. Now our last member of the panel is Ms. Lewis.


ADVOCATES FOR BETTER CARE, PHILADELPHIA, PA. Ms. LEWIS. Good morning. My name is June Lewis. I am president of Pennsylvania Advocates for Better Care which is a coalition of consumer groups working for improved quality of life in nursing homes.

I am speaking for a resident who is not able to make the trip from Philadelphia. She hopes that telling one small segment of her experiences with prescribed drugs will help bring about improvement in the medical care in nursing facilities.

We believe that this case exemplifies three of the ways drugs are misused in nursing homes: One is overprescription, that is, piling one drug upon another; poor followup of the patient and monitoring of the effects of drugs; and the use of drugs as substitutes for proper attention to psychosocial needs of residents.

A quick history of Ms. W. from September 1977 helps one to understand some of the frustrations which preceded a brief stay at a psychiatric institute and, 3 months later, hospitalization for dehydration.

On September 11, 1977, the resident fell on a slick floor, breaking her shoulder. A hot towel was applied. The following day, in her report, the charge nurse made notation of the broken shoulder. The resident was not taken to the hospital the night of the fall or the next day.

On the third day, while trying to move around the room to the bathroom, she fell again and broke her knee. She was admitted to the hospital that day with a temperature and stayed there for 442 months. During her stay in the hospital, theft of papers and clothing and other personal items occurred at the nursing home and continued after her return.

The day nursing supervisor and some aides had become quite at odds with the resident, and actions seemed to be taken deliberately to upset her. This state of affairs became the norm. She became increasingly suspicious of almost everyone with whom she had contact in the home. She suspected that they did not have her wellbeing at heart and that they were even going out of their way to make life miserable for her. Well-founded suspicions, I would say. She happens to be one of those few people who refuse to turn over and face the wall and be quiet. Especially since she has learned in the last year she actually has rights which are written down, it has become more difficult to deal with her in ways the nursing home was used to dealing with residents.

In the late summer, August 31, 1978, she became disturbed because she received no dinner tray. When it did not come for what she considered to be well past any reasonable time, she called the police who suggested that she talk with the administrator the following morning. The tray was eventually brought-she believes as a result of the staff learning of the call.

But the apprehension of the patient and "baiting” behavior by the staff escalated. About 8 p.m. she became frightened of the staff and barricaded the doors to the corridor and to the bathroom. She did not sleep during the night.

Toward morning on September 1, she again called police but hung up when she believed that staff was listening in. About daylight her roommate handed her a cup of what she said was Hawaiian punch which had been placed on a table which was barricading the corridor door. She took a large swallow-and discovered it was shampoo. The charge nurse tried it and verified this. The nurse called her doctor—a staff physician at the home-and then gave her several pills. She doesn't know what those were.

The time being Labor Day weekend, the charge nurse indicated that she and the director of nurses were concerned about her safety and suggested that she sign herself into the psychiatric institute for the weekend. She learned subsequently that she had signed in for 3 weeks.

Before entering the institute, Ms. W's medications had consisted of phenobarbitol three times a day, napercin for arthritis and a stool softener.

At the institute all medications were discontinued for a couple of days while evaluation was done. She was discharged in 2 weeks with prescriptions for a major tranquilizer-prolixin-vitamins, and a stool softener.

She reentered the nursing home on September 15. This was September. Her house doctor did not see her until the middle of November. She reports that he said her house doctor had asked him to look in on her. We learned that he was from the Catchment Area Mental Health Center.

During the next 3 months, October, November, and December, the medications were greatly increased. I should say here she is a very alert, articulate, intelligent woman who keeps minute records of practically everything that happens all day and certainly of her medication. She knows exactly what she is taking and all about it because she got this information from the bookkeeper, not from her doctor or from the nurse.

She did not know who was changing the medications or why. The doctor from the Mental Health Center suggested that she go back to the psychiatric institute, but she refused. She was feeling worse and worse. She complained frequently about the number of medications. She said she felt doped, could not carry on a conversation, and felt that she made a very poor impression on people who came to see her from time to time.

By mid-November her mouth felt parched all the time and by the end of the month she couldn't eat. She was completely uninterested in food. Her water pitcher was not filled by staff, and the thievery and harassment were continuing.

A listing of her medications during these 3 months show prescriptions filled at the same time for two major tranquilizersprolixin and mellaril-plus a minor tranquilizer-phenobarbitol and an antidepressant-sinequan.

In addition, a diuretic and medications for arthritis and leg cramps were being given. The medication to offset side effects of the prolixin-cogentin-does not show up on the December list.

A staff member of the psychiatric institute said that sometimes one major tranquilizer and one antidepressant are given at the same time and to be taking two major and a minor tranquilizer plus an antidepressant was certainly excessive.

About the first week in December some blood and urine tests were done, and on December 10 all medications were suddenly withdrawn.

On December 14, Ms. W. was admitted to the hospital for evaluation of her serum sodium. The admitting information stated that the patient had been taking a diuretic-laxi-a major tranquilizer-mellaril-and an antidepressant-sinequan.

It is further stated that she "recently has been noted in the nursing home to be more withdrawn. The patient has no other complaints.”

At the hospital the mellaril—the only tranquilizer they knew about-was decreased, and the antidepressant increased "since the majority of her problems appeared to be related to her depression and she lacked any psychotic symptoms.” The plans were to continue the antidepressant and perhaps increase the dosage to help resolve some of the depression.

The hospital summary states that the patient was admitted with hyponatremia-dehydration-probably secondary to a combina

“ tion of poor oral intake and diuretics. The patient's diuretics were stopped and she was rehydrated with potassium supplements and did well during this hospitalization.'

Of course what is missing here is an evaluation of the heavy tranquilizer load the patient had been under. It does not appear that the hospital had been given this history so they didn't know about it.

Since discharge in December 1978, Ms. W. has had no further hospitalizations. She is now taking a minor tranquilizer-phenobarbitol-and, at night, the antidepressant plus naprocin-neproxin-for arthritis and some over-the-counter medications such as Tylenol and Robitussin.

There have been other periods of concern and conflict over the medications, including our becoming involved in monitoring and complaining to the various directors of nurses who have come and gone and to medical staff about the lack of followup and communication with the patient.

Ms. W. has now been moved to another nursing home in the vicinity and is much happier. The food is good, which is good, so that she is eating three meals a day instead of only breakfast plus snacks of cheese and crackers which she was purchasing to fill in for the other meals. She is not being harassed by nurses and aides.

It remains to be seen whether or not the doctor actually visits with her and discusses her medications and condition.

The CHAIRMAN. Mrs. Byron, do you have any statement to make? Mrs. BYRON. No.

The CHAIRMAN. Mr. Roybal, do you have questions of any member of the panel?

Mr. ROYBAL. I have questions of the two Californians who are here. I understand you are from Santa Cruz, Calif.?

Mrs. LILE. That is right.

Mr. ROYBAL. Was the nursing home you referred to in Santa Cruz?

Mrs. LILE. Yes, in Santa Cruz County.
Mr. ROYBAL. Was it in the city?
Mrs. LILE. Yes.
Mr. ROYBAL. How large a home is it?

Mrs. LILE. The one was 55 beds and the other was 25 beds. The smaller one we moved her to because we thought the larger one was too confusing for her and the first one was about 25 beds.

Mr. ROYBAL. Were the conditions you describe generally found in all three homes or is one a little worse than the other?

Mrs. LILE. I would say the 55-bed facility happens to be the facility that I am currently the ombudsman of now, and I am not prejudiced but I really feel they are trying to do a good job. They are a lot better than when we first started. I think part of it is due to the fact we go in there regularly as ombudsmen and they know we are there to help them and we sit down with the administrator and ask her if she has any problems-lots of times family will give the facility problems—then in the meantime, lots of times we will pick up other complaints from the patients or from the families that are there.

So they know we are there and I think the fact they know there is an ombudsman there helps a lot; 75 percent have no families and a lot of them have no one who comes to visit.

Mr. ROYBAL. Did it occur to you those who have no families are the ones that are continuously sedated?

Mrs. LILE. I would say that is probably true because they have no one really to look after them and see the condition they are in.

Mr. ROYBAL. Is it your opinion that the reason this is done is to keep the patient quiet and not attended to?

Mrs. LILE. Santa Cruz County is probably no different from any county. We are very low in our staffing as far as nursing assistance and nurses aides. They have a hard time holding them. We are a beach community. If the day is nice and sunny, they won't show up because they have gone to the beach. They will call in sick. It gives the others a double load to answer.

The R.N.'s are loaded down with paperwork so the majority of the work falls to the aide and right now I would say they are staffed at the minimum that they are supposed to have. They are supposed to give 2.5 hours per patient day but that is not being done because they count the R.N. as two aides.

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