We are writing about that and saying this is not right because this is not a person who is actively taking care of the patient. Yet, they do count her in.

Mr. ROYBAL. One of the mechanisms that is used is prescribing drugs to sedate them, keep them quiet and that way they receive less attention. Is that an accurate statement?

Mrs. LILE. I would say that would be occurring more in our larger facilities. We have three or four 99-bed facilities owned by corporations. The one I am ombudsman of is privately owned. I would say you find it more in the ones that are corporate owned. They have to show a profit. They are under pressure and they are not as free as the smaller independently owned facilities.

Mr. ROYBAL. The independently owned homes, in your opinion, are better administered and the patient gets better care?

Mrs. LILE. In our particular area-I would say there is one facility that I would say is corporate owned that is doing well but I would say the smaller, privately owned homes are doing better.

Mr. ROYBAL. Six years ago, your mother was diagnosed as having CBS and you were told that she would never leave the nursing home?

Mrs. LILE. Right.

Mr. ROYBAL. Would you briefly describe the present condition and some of her activities to give us a contrast of the diagnosis at that particular time and the reality today?

Mrs. LILE. Right. My mother has been actively participating on different committees. She was on a committee for day care. They undertook a study for day care which was a shame because they didn't have the funds to fund the day care center but they thought that might be part of the solution, to have the people taken care of during the day and the family take them home at night. That does encourage them to have a more normal life but no more funds were available.

Then she is in church work. She is in a health clinic which meets once every 2 weeks and they do screening and blood pressure free at the center where she lives. She is in the nursing care of the one I am currently president of, and the whole reason we started was because we had 12 people like me who all had similar circumstances, and we brought it before the county board of supervisors, and they, in turn, turned it over to their senior commission to investigate this.

Then they said the best thing was to establish an ombudsman position at that time. That is how it came about. Mr. ROYBAL. Thank you, Mr. Chairman.

The CHAIRMAN. Mrs. Byron.

Mrs. BYRON. I have a few questions of Ms. Lewis.

You gave us a very excellent history of one patient in one facility. That patient has now been moved to another home. Do you have any evidence of any other patients that were at the original facility in the same circumstances or was that a specific case that stood out above and beyond the rest?

Ms. LEWIS. No. We have been involved with trying to help three other patients at that same facility. We do this, of course, at the request of patients usually.

Two of the patients have died. There are serious questions in the minds of several people about the circumstances of the deaths of other patients. There is enough information about them to indicate that mismedication is common.

This patient that I told you about has expressed concerns several times about the people who take the medication cup and swallow the medication without even looking in the cup. She says, no telling what they are getting and they won't know until something bad happens to them.

Of course, she happens to be more alert than most people in the nursing home and simply more interested.

Mrs. BYRON. I would think traditionally a patient who is on a periodic medication is not going to check each time the medication is given.

Ms. LEWIS. I know. But they should. Mistakes are common.

Mrs. BYRON. But you currently have three other cases that you are working on?

Ms. LEWIS. Within the past 2 years, yes, we have three other cases, and two of those people have died since we started working on the case.

Mrs. BYRON. What is the status of the third one right now? Ms. LEWIS. He is still ambulatory. He has been in and out of the psychiatric institute several times.

The main problem or one of them is that the staff is totally untrained to deal with the people who have been released from the mental institutions. When they were released many went in on the nursing homes. As funds have been cut from the mental health centers, no longer do those teams go out from the center to hold weekly group therapy sessions. Those were cut off. So that the people have no outlets.

There is no way to continue that kind of therapy. Sometimes that causes an escalation of their problems. The current nursing home staff is simply not trained to deal with that. They become as difficult or more so than the patient, the ones I have tried to talk to, including medical directors, doctors, and supervisors of nurses, much more disturbed than the patient is and they exacerbate the patient's problem, whereas if they were trained and competent the patient could be handled.

Mrs. BYRON. Basically your theory is by cessation it compensates for the escalation of the patient's condition?

Ms. LEWIS. Yes. It covers up or it takes the place of dealing with the patient's problems on a human level. If you can sedate the patient out of his problems so he just sits there as far as you are concerned, then those problems are solved, and that is the way they are handled a great deal.

The CHAIRMAN. Ms. Oakar.

MS. OAKAR. Thank you, Mr. Chairman.

Mr. Chairman, listening to the testimony reminded me of the statement that a patient at a nursing home had made several years ago. This man was a double amputee. He said, "You know, Mary Rose, I came here to live, not to die."

I think that philosophy is what we ought to expect of nursing homes, that they don't just knock people out with a view that they are ready to die.

I would like to ask either Mrs. Stanley or Mrs. Lile a question about how you got off these drugs because from the sheets we have here, reports, really-I hate to use the term-your mother was almost a "junkie." How did you do that? You look so magnificent

now.

Mrs. STANLEY. At the last residential care home, I went down to breakfast and when they would give me the medication in a little cup, I had a kleenex up my sleeve and I would put it up my sleeve and I would pretend I took it. I didn't pile them up.

My daughter didn't have much confidence in this woman; she wasn't trained to run this place. There were many things that were not going right there. So she took me home all Sundays, finally she got me to church. And she asked to have charge of the medication which she didn't have and I didn't have.

I was put on just a very little bit of something for my nerves. Then it was a very short time that I was able to go back to my house and manage by myself. Just getting off of all that gradually, I got back so I could walk again.

Ms. OAKAR. It was a gradual process?

Mrs. STANLEY. All of a sudden the doctor took everything away from me which was hard on my nervous system.

Mrs. LILE. He overreacted. When he found out he never put it in any written statement that it was a drug overdose but one night when she was at the residential care home she was so incoherent she passed out on the bed.

The woman called me and said something has happened to your mother. So we took her to emergency and they gave her all kinds of tests, kept her there a couple days; and they would never admit it was a drug overdose. Verbally the doctor told me later that is probably what happened. That is all they could figure because all the tests were all right otherwise.

Ms. OAKAR. We have been really picking on the nurses who I usually defend. I want to ask a little about the doctors. Ms. Lewis, you mentioned that you felt not only wasn't there proper training of the staff, even though they were licensed to practice, that the doctors infrequently consulted. An easy way out is you tell an individual to "give it as you think they need it" without being more specific. Do you find that is a problem, that doctors lose a one-on-one basis?

Ms. LEWIS. What was the last part of your question?

Ms. OAKAR. That the doctors infrequently see the patients.

Ms. LEWIS. That is correct. The blame is misplaced, frankly, to put it on aides. They are the last on the rungs of the ladder and, first of all, the medical directors and the doctors, with whom I have had contact and granted, they have when problems existed, of course-refused to even discuss the case. They have reacted in almost wild incoherence at questioning them or stating you are claiming on behalf of such-and-such patient and you would like to meet with him to talk about the case. This has not worked for me. MS. OAKAR. They are very indignant about it?

Ms. LEWIS. Very self-protective, highly indignant that you would even question them. The particular supervising nurse in this case about whom we have had complaints from other patients also said to me, you can't question a doctor. I said, well, of course you can.

That is ridiculous. She is just as protective of the doctor as he is of himself.

When we started getting into the case with Mrs. W., I checked. She had been told in January that she was losing her hearing and that is why she couldn't hear; there wasn't anything wrong with her ears. She was just getting deaf. The doctor had never looked in her ears.

Finally, I called him and he recommended she go to a specialist. I said, would you please see Mrs. W. before she has to go to the trouble and pain of going to a specialist? He says, I assure you, Ms. Lewis, I know exactly how to handle this situation. But he went to see her the next day and found both ears were plugged with wax. They were checked out.

On the record it says he saw the patient in February and he saw the patient in March. I said, what does that mean, they walked by the door and said, hi, how are you today? Can they then put on the record that he saw the patient? She didn't say a word, she shrugged her shoulders and looked skyward.

MS. OAKAR. One last point and I am sorry to take a little long, Mrs. Summer, you mentioned that you were paying all your nursing home expenses?

Mrs. SUMMER. They paid it all as far as their money went and then they had to get help.

Ms. OAKAR. The question I have is something interrelated. In my city of Cleveland, our ombudsman program found there was a lot of other billing for drugs and that you had to go to one certain drugstore to get the prescriptions. They in effect found there was a real deal going on between the pharmacy and the nursing home and that was related to all these prescriptions.

First of all, you had too many prescriptions and; second, overbilling.

Mrs. Lile, have you found that in your work? Is there a relationship between some pharmacies and nursing homes?

Mrs. LILE. At the beginning there was and they wanted to use the unidose system which is less expensive for the patient because instead of buying 100 capsules of valium, say, they would give it to them daily one at a time and pay for only that medication.

If the doctor switches to a new medication, then you don't have the 80 left over or whatever. So a lot of the facilities went to the unidose system. But I asked them, if I bring it in from a reputable drugstore and it is unopened, would I be allowed to do that and in the smaller facilities they allowed me to do that. But the larger facility said, no, she has to get it from our pharmacies.

Ms. OAKAR. You see, that is really something.

Mrs. LILE. You had to sign that. When you sign your agreement with the nursing home that is part of it. We said we are not going to sign that.

Ms. OAKAR. I hope I am around when the American Association of Colleges and Pharmacies is here to answer some questions about that. Sometimes these groups don't monitor their own pharmacies. Thank you very much.

The CHAIRMAN. Mr. Ratchford.

Mr. RATCHFORD. The problems described by the panel are very telling and they raise a question for me as to whether they exist as

a result of shortcomings in the law or human problems in administering the law. I just wonder if you have a general opinion.

Do we need more laws in this area or are we talking about administration of the law? Does anyone have an opinion on that? Ms. LEWIS. I think if we could enforce what we have, certainly things would be vastly improved. I do think, as some others have expressed here, that the regulation is not high enough on trained nurses. On the other hand, this could be alleviated somewhat if the aides were well trained. Facilities simply do not train aides as they should. If that were done that could alleviate the problem also. There definitely needs to be much better training in the psychosocial area because they simply don't communicate with the patient as a person.

I was at a meeting about 2 weeks ago with the director of Pennsylvania Health Care Associations, the providers association in Pennsylvania, and we were talking about nursing home problems. They were discussing what was wrong with nursing homes. As far as self-regulation is concerned, while he spoke highly of peer review and thought their system was terrific that the providers had, how they went from home to home reviewing each other, we asked what do you do if a complaint comes to you. Well, they had to tread very lightly because they were supported financially by members and if they offend a member, then he will withdraw from the association, so we said, then you are saying that we just need to heavily regulate you from the outside, that you can't regulate yourselves.

Well, he didn't like to say that but essentially that is what he was saying. This says to me that the laws we have are not being enforced. There are a lot of problems around that.

Mr. RATCHFORD. Is that opinion shared by the panel?

Mrs. LILE. I would say so. We have licensing located in San Jose which is about a half hour's drive from where we are. The head of the department of licensing and certification says he is understaffed, he is very grateful there is an ombudsman program because he says, unless it is a life and death matter we don't have the manpower to get out there and look into the situation.

I was thinking also when they diagnose a person as senile or chronic brain syndrome-I couldn't find my article I broughtthere are many times it can result from malnutrition. There are many things that can cause symptoms that would manifest themselves similar to senility which is not true senility.

I don't like the blanket use of classifying a person as senile and writing them off, and that is it. After all, she is 80 or so, what can you expect? We are living longer and longer and I don't care if you are a hundred, you still have the right to be given all the opportunity you can to live the best quality of life you can get.

I would say that would be on the doctor's side, better diagnosis. Mr. RATCHFORD. One final question. For those of you from States where patients in nursing homes have ombudsman statutes, has that been a help in fighting against the tendency to overmedicate in nursing homes?

Mrs. LILE. I would say so. I was telling the girl out in the hall that we have a senior patient advocate and a mental health patient advocate now and they tell the patients what their rights are. But

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