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NON-OBSERVANCE AND QUALITY OF INFORMATION
GIVEN TO PSYCHOTIC PATIENTS ON THEIR TREATMENT
Version française
Introduction
Evaluation of the quality of information given to patients
Practical details of information
Conclusion
Bibliography
Introduction
Medicinal non observance proves to be of a highly expensive social cost. Leading to relapses and rehospitalization, it contributes to increase the treating burn out. The cost is especially heavy with chronic pathologies (particularly with schizophrenia's) which require long-term therapies.
A close study of literature shows that the psychotic's non-compliance of the treatment is due to a denial of the illness, to relationship problems with the doctor or the nursing staff, to the considerable side effects of neuroleptics, to social stereotypes relative to medicine/drug and to a false information about these drugs.
While prescription brings into play the doctor/patient relationships, the delivery of drugs in hospital environment comes within the scope of the nurse/patient relationships and the nurse/doctor relationships. Nurse's particular place is a medium for an extremely complex (not to write transferential) interplay of relationships.
Selecting non-observance as the subject of the study, we make the assumption there is such a psychic dissociation form psychotic patients that it is illusive to think to inform them on their treatment without carrying out a real work of taming. The task comes within a long-term program and mobilizes every contributors of a section. These contributors are not mobilized on their professional practice only, they are also questioned on their own relation to drugs and medical knowledge. The quality of information given to patients can be appreciated only from an institutional point of view
(3).
Evaluation of the quality of information given to patients
Nurses from each functional unit of the 14th section of Paris met to think about their practice and possibly to structure further thought on it. 38 charge nurses and nursing officers took part in this first step. Originally, it was vaguely planned to introduce the first "Scientific Days of CH Esquirol", co-organized by Dr. Windisch, head-doctor of our section. A small number of nurses were the driving elements of this work. Essentially, they were mobilized by the history of the profession and a requirement of reflection on their daily practice. Also, they shared an involvement either in academic education (Master of Mental Health, directed by the University of Paris-Val de Marne) or in the clinical path.
The group wished to study on common side to every nurses practice, wherever it occurred. You may be a full-time nurse in hospitalization Unit, in Reception and Crisis Centre, in Psychotherapeutic Day Centre or in Part-Time Therapeutic Reception Centre, you may house visit or carry out an educational work around relay flats, you are led to talk to patients about their treatment, to give them information on drugs, though you do not deliver them.
After a bibliographical research, we set up two questionnaires with the "yes/no/not aware" answers. This kind of questionnaire's interest is not to allow interpretation from the quoter. One was intended for patients, the other for nurses.
The questionnaire "patient" was divided in three parts. The first on focused on how patients perceive the quality of information. The next one, more precise, checked patient's knowledge on sleeping drugs, sedative and incisive neuroleptics, on their directions for use, on the therapeutic and side effects.
Filled in by the nursing staff, the third part indicated allocation, place and length of follow-up, the level of study and description of the patients psychical state, based on the items 4, 11, 12, 14, 15 from the Brief Psychiatric Rating Scale
(4). We chose the BPRS because it is the scale the most frequently used to evaluate schizophrenic states. It is a Likert like scale of 18 items with 7 categories for each of them. The number of categories was brought back to 5 for each item. Results from previous studies proved this scale to be reliable, with a low difference between the quoters.
The target population consisted of schizophrenic patients taken into care by the 14th section of Paris, at least in hospital since two months (which meant they were examined while the crises was less acute), or at least followed in extra-hospital since six months. So, each patient had received information on his or her medicines.
Patients were selected in collaboration with each doctors from the section. Momentarily weak patients and those the questionnaire might have weakened were excluded. Persecuted patients, living their treatment as a poison, thinking being recorded by micros, etc, were excluded. This being a first study, we had to avoid to throw nurses and patients into a panic. If the survey was conducted today, certainly it would concern a greater number of patients. Among the five patients who refused to answer the questionnaire, it is worth noticing that three had ideas of reference and delusion of persecution (cf. BPRS).
52 nurses (12th and 14th sections of Paris) answered the questionnaire.
We removed all nurses who knew (as they took part in the Scientific Days) the temporary results of the survey because they could modify their answers. Questions were conceived to cross-check the questionnaire "patient".
From 8th December 1992 to 15th January 1993, 33 psychotic patients (out of 38 approached) answered the questionnaire. A large number of them did it enthusiastically. Doctors and nurses were not reluctant, unlike what we could have thought.
Therefore, 33 patients (16 in extra-hospital and 17 in intra-hospital) answered the questionnaire.
In hospital, the 17 patients were divided this way : 10 in the Dejerine care unit, 4 in Falret and 3 in Royer Collard. It must not be concluded that one unit was more involved than the others. Length of hospitalization, nature of pathology were significant elements in the patients selection.
In extra-hospital, dividing the patients was more difficult. Whether you find 2 patients followed up at the CATEB, 1 in dispensary and 13 in day hospital, it does not depend on the nursing involvement. Among the patients hospitalized in Day Centre, some go to the CATEB reception centre on week-ends, others are visited by dispensary nurses or take part in the groups they propose.
For instance Simon, a chronic psychotic with high abandonic experience, goes to day hospital Monday to Friday every morning. He receives house visit from dispensary nurses on Tuesday and Thursday afternoon. Finally, he spends all his week-ends at the CATEB to "put in a token appearance" and take his treatment.
Each patient is not always so heavily undertaken. However, we were unable to characterize patients by anything buy their extra-hospital follow-up without giving greater importance to one structure with another.
Weekly house visits are the only contacts some patients have . It seemed difficult to the dispensary team to ask them to come out to answer the questionnaire while some could not even move. Also, nurses feared to appear too intrusive in interviewing patients at home.
To avoid important imbalance in conducting the interview and the questionnaire, the same nurse had to assume every meeting, which was inconvenient at home.
So, each patient filled in the questionnaire in presence of two nurses, the nurse in charge and a nurse from the structure of care. It was the only way to have patients at case, to avoid important imbalance in conducting the interview, but also to correct errors, even misunderstandings, aroused by the questionnaire. It could have mislead patients not to go again over the right or wrong questionnaire on drugs 20 minutes were enough to answer the questions. This time was often doubled in hospital as patients seized the opportunity of asking questions on their treatment.
We considered that to know the treatment was to be familiar with the names of prescribed drugs, their dosage, the intended therapeutic effect, the directions for use, the supervising elements and the possible side effects.
The questionnaire part on treatment was made up of 25 items. Only two patients who answered it made less than five errors. It represented 6% of the target population. We could notice many psychotic characteristics about these two patients.
Regarding the difficulty of the questions, we reckoned that patients knew their medication when they made less than 10 errors.
The appropriateness between the name of the drug and its therapeutic effect was found in 30% of hospitalized patients and in 50% of patients followed in the section.
Those who knew their treatment the most had higher education and a follow-up at least since 10 years. They were out of the acute phase and seemed spared by conceptual disorder.
When they want to be informed, patients ask their doctor in extra-hospital or nurses in intra-hospital. It seems that the dailies the information is, the harder patients can mention the very moment it has been passed on. When they do so, they remind a special moment described as a base for a new understanding of both pathology and treatment. This moment is always linked to the presence of a referent nurse they share a special relation with.
Whether patients combine sleeping drugs with fight against insomnia, Largactil®, Nozinan® and sedation, even decrease of anguish, the great majority of them prove to be unable to link delirium, hallucinations and prescription of Haldol®. It is not easy to agree for a treatment whose goal is to fight what is not perceived as symptoms. More over, nurses do not dare to name symptoms these delirious perceptions.
The level of patient's unawareness match up to what nurses keep silent. Just as if the information delivered by the doctor should be told again by a nurse to be fully understood.
When they ask nurses, patients do not require scientific information ... With drugs, they talk about what they feel in their body. The questionnaire proves that patients are not aware of the side effects as described in Vidal. However, they watch carefully the feelings arising from their own body. Whereas for nurses, there is no link between drugs and their feelings.
A wheel aware patient would not necessarily take the treatment well. For instance Noël, a former medical representative, knows perfectly the molecules, the mechanics of action of prescribed drugs. These drugs are good for the others, the sick. Why should he take them, he, who is not ill ?
Practical details of information
The statutory order from 15th March 1993 establishes care of nurse as technical, relational and educational. Their purpose is to administer prescription and protocol ordered by the doctor, to take part in the clinical supervision of patients and the implementation of therapeutics, to encourage the maintenance, the integration and the rehabilitation of people into their family and social environment. About their own function, nurses cheek the dose of drugs and supervise the effects. If necessary, they also have to educate patients and their environment.
Educational action is aimed at patients to acquire and integrate a knowledge for maintaining, modifying or acquiring well-thought-out habits and behavior, fitted to their environment. It has to make patients understand the need for doses at regular intervals as to deliver information on the directions for use and the drugs side effects.
The statutory order from 15th March 1993 also specifies that nurses identify the patient's needs, draw up a nurse diagnosis and objectives of care provide appropriate action and assess it.
From a practical consideration, information on treatment does not have the same purpose in intra and extra-hospital. Thus, 72% of nurses practising in hospital regard supervising patients and provided therapeutics as the most relevant action of their task.
On the other hand, 72% of nurses working on extra-hospital give greater importance to people's maintenance and integration in their own live environment.
When patients ask for information on their drugs, they always get it from nurses who may refer to the consultant, whether they think they need to. This way, nurses fully support their mediating role between patients and doctors.
What kink of information should doctors give to patients ? Answers vary along with the functional Units. In hospital, 73% of nurses think they should specify directions for use and length of treatment. Only 53% of them add to it the therapeutic and side effects.
In extra-hospital, three nurses out of four consider that doctors should state the therapeutic effects, length of treatment and supervising elements. All these pieces of information are repeated by nurses to encourage patient's autonomy. The more doctors will inform, the more nurses and patients would work properly. That is how 55% of patients in extra-hospital are aware of their treatment's therapeutic and side effects.
In hospital, patients are informed mainly at their own request (73%). Information could be delayed according to nurse's availability (60%). If patients do not inquire, they get information by less than one nurse out of two (48%).
Educational work at the treatment taking occurs essentially on days out (66%) or on final departures (66%) which is rather late. The issue of treatment will also be discussed on a house visit.
In extra-hospital, nurses do not wait after questions to mention the treatment. Three nurses out of four spontaneously talk about it and obviously answer the inquiry. Nurses practising at the Psychoterapic Day Centre specifically treat this point with the group on duty and less formally during various group activities.
What nurses deliver as information is not specific to one structure or another The basic difference between intra and extra-hospital is that nurses wait for questions in intra, whereas the anticipate them in extra.
To give information alone is not enough, you must also be convinced by the need of doing it.
In intra, 59% of nurses think they have to inform patients on their treatment and 26% consider it as useful. Statemented intentions apart, nurses classify when they talk about clinical situations. Thus, knowing treatment can be prejudicial (13%), selectively prejudicial (66%), even in contradiction with the therapeutic objectives (66%) for one particular patient. According to 40% of nurses, the patient's psychical state can make information useless.
In extra, knowing treatment seems essential (22%) required (66%), useful (66%).
What functions has the information delivered by nurses ? Basically, they contribute to reassure patients (88%). They are opportunities to check whether nurses and doctors say the same thing (42%). At last, they can improve medicinal observance (24%). So, the link between information and observance is not to be universally admitted.
We must say that 42% of nurses consider information as sometimes useless as patients do not always, take it into account. Knowing treatment is regarded as a right by 70% of nurses. But as such, it is not admitted for patients whose psychical state is much too disturbed (52%).
Conclusion
There is still a long way before each nurse feel responsible for the treatment they deliver, before each nurse make the decision to fairly inform each patient. How could patients take part in the therapeutic decisions applied to them, if nurses and doctors still foster a mystery out of drugs often described as suppressants ?
To imagine informing nurses and silent ones is too grotesque. Whether they want it or not, nurses do inform patients. They tell them drugs are not of their concern, they deliver a piece of information confined to its organic side they send them back to the consultant, they talk about leaving and further treatment.
And yet, to formalize a nurse diagnosis of medicinal non-observance risk would allow an evaluation of the level of acceptance and awareness of the treatment and the illness. Also, it would allow to suggest and educational activity about health to each rehospitalized patient (when this rehospitalization results from an interrupted treatment).
To inform patients on their treatment is not just to deliver more of less vague pieces of information. It has to create a space for talking about medicine.
Patients joining in educational groups can express and classify their denial of the illness. They can deny what they perceive as being hallucinations. Also, they can admit they have bad sleep, they need help to fight their persecutors, etc... providing a lever from which care could be claimed and formulated. Indeed, patients can shout in every possible way that doctors and nurses are incapable and annoying, they scream from where they strike up relationships with one or several staff members.
An alliance will spring from this place and these relationships. Through it, the educational side could be just an excuse. The authors notice that patients are even more compliant since there is a therapeutic alliance and also, the less severe the side effects are, the better patients accept their treatment.
Is this educational group not the ideal place where social stereotypes relative to medicine/drug would be modified ?
Without practice again, there is no relevance to evaluate the quality of care.
To improve the quality of information delivered to patients, we made a didactic film (with the help of the video of the institution) about psychotropics entitled "Living in the city".
The film is a medium for meeting about treatment and its relating questions. To date, four groups of patients saw the film. The first showing occurred as part of the "everyday life" group.
Patients from different groups were so enthusiastic that it now looks essential to carry on with this experience. Also, these exchanges around the film did not amount to a simple evocation of the treatment and its relating problems. Patients worried about their leaving, their loneliness, the caring-cared relationship and the illness.
Since October, the section sent a nursing officer and a nurse to create dynamics around these everyday life notions. The educational and relational side is at the centre of their concerns.
D.FRIARD, A.M. LEYRELOUP, J. LOUESDON, M. RAJABLAT, G. STOLZ,
WINDISCH.
Service du Dr WINDISCH, C.H. Esquirol (94).
Bibilography
1- MARIE-CARDINE (M), La relation "médecin-malade" à travers le médicament- Rapport introductif, XXXII ème Congrès de Psychologie Médicale de langue française, Grenoble 22-23 septembre 1989, "La relation médecin-malade à travers le médicament" in Psychologie médicale. 1990,22,6 : 471-475, p.471.
2 - LACHAUX (B), Le placebo dans le cadre de la prescription médicamenteuse : panacée ou psychotrope ?, in Psychologie Médicale, op. cit., pp. 491-495, p.493.
3 - FRIARD (D), LEYRELOUP (A.M), LOUESDON (J), RAJABLAT (M), STOLZ (G), WINDISCH (M), Psychose, psychotique, psychotropes : quel rôle infirmier ?, Editions hospitalières, Paris, 1994.
4 - BECH (P), KASTRUP (M), RAFAELSEN (O.J), Echelles d'anxiété, de manie, de dépression, de schizophrénie. Correspondance avec le DSM III, Masson, Médecine et psychothérapie, Paris 1989, 76 p., pp. 62-73.