Summary. The diagnostic information in lung and gastro-enteric cancer: the opinion of the doctors and the consciousness of the patients. Many studies clearly show the increasing trend of patients to obtain more information about their disease. We have conducted a study in order to assess how diagnostic information is important in doctor’s opinion. For this reason, a questionnaire was administered to 91 doctors and 195 patients. Even if 91% of patients refer to have received an explanation about their disease and doctors refer to have informed 64.2% of pts, really only 48% of patients know the nature of their disease. 91% of doctors are in favour of communicating the diagnosis. However, when asked how many times they have given correct information to their patients, the median percentage of patients that they have informed is 64.2%, while only 46% of doctors communicate the diagnosis using a correct terminology. The results of the study show that only half of the sample is really informed about their disease and that doctors still have difficulties in giving correct communication to their patients.

Key words. Cancer patients, communication, information.

During the last decade there has been a statistical increase of cancer diseases. Communication and information problems between doctors and patients have been at the centre of debates within the judicial, deontological, ethical and psychological environments.

Up until the 60s the most common attitude amongst doctors in Italy and abroad who were dealing with cancer diseases was to hide the truth from the patients, i.e. they chose not to communicate the cancer diagnosis directly to the patient but instead to the family members.¹

During the following thirty years there was a great change, above all in the United States, where by the end of the 70s more than 90% of doctors preferred to tell the patients the truth.² A similar trend in giving an informative diagnosis took place in countries in the centre and north of Europe, whereas a strong resistence continued in the Mediteranean countries, including Italy.³

To tell or not to tell the ‘truth’ to the cancer patient is an age old issue that is still currant in Italy.

Regardless of the judicial regulations and the new Deontological Medical Code of 1998 that clearly states that it is a medical staff’s duty to provide composed and appropriate information about the diagnosis, it is noted, above all in cancer diseases, that there is a general difficulty amongst Italian doctors to give a realistic and truthful informative diagnosis.⁴

This depends on the fact that the psychological implications on this patient are notable and regard the history of this illness, from the first appearance of the symptoms, to the diagnosis, the treatment and the favourable or inauspicious outcome.⁵

Therefore it is widely held that a cancer diagnosis, given its gravity and its chronic nature, and the conviction that you are dealing with a mortal illness, can have devastating effects on the life of the patient and the family.⁶

On the other hand the modality with which one is able to establish an emphatic relation with the patient is without doubt an integral part of the attitude of the doctor, of importance certainly not inferior to the adequate choice of the chemotherapeutic protocol, the quality of the support therapy and of the logistic-assistance organization. In oncology the strong load of anguish that cancerous illnesses evoke, the long lasting cures that have significant side effects and the increase of survival imposes on the doctor-patient relationship the need for continuous communication characterizing the assistance to the cancer sufferers like an ‘accompanying medicine’.⁷ Therefore, more than addressing the issue of exchanging information between doctor and patient, one needs to look at the comunicational capacity and at a relationship that will continue in time. The university training in this field is to date lacking and the doctor-patient /family relationship has been mainly based on the personal predisposition and the sensitivity of the individual.⁸

One needs to learn how to establish a kind of relationship that is able to characterize and permeate the relation for as long as it lasts. This can be done through a continuous and explanatory modulated action, that enables one to psychologically and emotionally sustain the patient during all the phases of the illness: by explaining and motivating the therapeutic choices that get harder and harder when high levels of toxicity and side effects compromising the quality of life might occur.^9-10

Our study wanted to concentrate the attention on the earliest moments during the history of illnesses, in relation to communicating the diagnosis. This moment is in fact of particular importance. The decision to either comunicate the diagnosis or not is influenced by the patient’s relationship during the course of the illness. This conditions not only the various medical staff that have to intervene with him, but also the family and friends.

In Piemonte, it was proposed to investigate with which frequency the diagnostic information of the neoplastic illness was given directly to the patients by the medical staff, oncologists and surgeons. It follows a pilot study previously conducted by the same research group from SIPO in Piemonte¹¹.

The research was orientated on cases dealing with gastro-enteric and lung cancer, supposing that in this environment the information is lacking, difficult and anxious.

In the gastro-enteric and lung pathologies, however, eventual surgical intervention are on internal parts and therefore less verifiable and less visible so the information can be elusive, partial or incomplete.

Often these diseases have a bad prognosis, so that it is harder to give an appropriate diagnostic information.

From September ’99 to January 2001 in 5 centres in Piemonte (San Giovanni Battista-Molinette Hospital — Torino, Civil Hospital in Ivrea, Bra Hospital, Venaria Hospitl, Asti Hospital and Pinerolo Hospital) research took place on just diagnosed patients affected by gastro-enteric and lung cancer.

The patients were interviewed within 3 months after the diagnosis. During this period it is presumed that medical staff should already have intervened with the diagnostic information, while it is presumed that no external sources of information have intervened as yet. The research is meant to measure the degree of information and the diagnostic communication given to the patient within the first three months after having received the cancer diagnosis, with respect to the hospital medical staff.

A double questionnaire was utilized for medical staff and patients (mirror) which was able to confront and research the problems on three levels.

1. The opinion of the hospital medical staff (particularly about what they think of the diagnostic information).
2. The practice of the doctors (i.e. what do they say to have done with the diagnostic information for the treated patients within the last three months).
3. The information perceived by the patients.

The study and observation, was carried out through a structured interview together with a self evaluation questionnaire. One completed the questionnaire alone, there were Yes/No answers, scaled answers or liberal answers.

The questionnaire was given to 195 patients (53% were affected by a gastro-enteric pathology, while 47% were carriers of lung pathology) and 91 doctors from the hospital (from the Medicine, Oncology and Surgical Divisions where the patients were involved with the study).With the following distribution according to the locations (tables 1 and 2):

Table 1. — Distribution of questionairs given to 195 patients on the bases of the location.

Table 2. - Distribution of questionairs given to 91 doctors on the bases of the location.

With regards to the doctors’ specializations the table was subdivided as shown in table 3.

Table 3. - Distribution of questionnaires given to doctors based on their specializations.

195 patients answered the questionnaire: 109 males (56%) and 86 females (44%).

91% of these confirmed that they were aware of the pathology of which they were affected. In fact the answer to the question "Was the illness you have explained to you?" are shown in table 4.

Table 4. — Answers to the question "Was the illness you have explained to you?"

The following question (Table 5) which investigates the precise content of the diagnostic information, highlights that only 48% of the patients were given correct information. The question required liberal answers that were grouped into three categories according to the key words used:

Correct diagnosis: tumour, cancer, malignant tumour.

Incorrect diagnosis: inflammation, benign lesions, polypus, nodule, cyste

Ambiguous diagnosis: neoplasia, suspect cells

27% of patients, even though they had declared that they were aware of their illness, defined it by using incorrect terminology (inflammation, benign lesions, polypus, nodule, cyst); 11% used ambiguous terms such as neoplasia or suspect cells, 14% didn’t answer.

Table 5. — Answers to the question "If yes, what illness do you have?"

The following question ("Who gave you the information about your illness?") was asked to determine whom the information was obtained from.

The patient had a multiple choice (surgeon, oncologist, general practitioner or from another source) and most patients chose more than one answer.

The majority of patients (45%) received the information from the surgeon and 35% from the oncologist. When specifically asked, however, "from whom did you receive information about the therapy?" the majority of patients (about 70%) said from the oncologist and a lot less from the surgeon. Like before this was a multiple choice question.

The doctors were asked if generally speaking they thought it was a good idea to tell patients of the malignant lung or gastro-enteric cancer.(table 6.)

68% answered yes, for ethical reasons (answers that underlines the patients’ rights) and relational (answers that underline the importance of a theraputic alliance), 23% said yes, but ambiguously, which is related to the doctors’ personal judgement, and 9% said they didn’t know.

Table 6. - Answers to the question "Do you think it is right that patients are told about their malignant lung and gastro-enteric diagnosis?"

When asked "When you give a diagnosis, which words do you usually use? (if possible give only one answer)" 34% answered neoplasia, 46% tumours or cancer and 20% others (polypus, cysts).

Table 7. — Answers to the question "When you give a diagnosis, which words do you usually use?"

When asked: "Do you believe that giving the true diagnostic information can be useful to favour the patients’ cooperation in therapies?", 92% said yes.

Focusing the doctors’ attention directly on the patients suffering from cancerous lung or gastro-enteric pathologies we asked: "Thinking of patients with lung and gastro-enteric cancer treated by you during the last three months, how many times did you tell the whole truth directly to the patient?". Only 44% of doctors confirmed that they gave the diagnosis to more than 75% of patients (table 8). If we consider the average value of the percentages (for example between 75% and 100% the value is 87.5%, and that’s the way it is for the other intervals). According to the doctors judgment, the average percentage of truly informed patients within the last three months is 63.75%.

Table 8. — Answers to the Question "On how many occasions do you belive to have given the whole diagnostic information directly to the patient?"

The main task of the study was to find out the doctors’ opinion on the diagnostic information and the patients’ awareness of such comunication.

With regards to the doctors’ questionnaire, after analysing the results it was ascertained that the highest percentage was made up of surgeons and interns (57%): this data confirms that, within the health system, the cancer patients’ initial contact is with the surgeon and then with the oncologist.¹²

The results ascertain that, in the Piemonte region, a true diagnostic information is given in little more than half the cases. In fact the results showed that, even if 91% of the patients said they were given an explanation regarding their illness, the doctors stated that 63.75% of the patients were informed, however, in reality only 48% of the patients knew the nature of the illness they had been affected by.

This data seems to clearly contrast with the information given by the interviewed doctors, 92% declared to be in favour of communicating the diagnosis. If, however, we ask the doctors on how many occasions they gave true information to the patient, the average percentage is 63.75% and only 46% use the correct terminology.

The information obtained suggests that there is still a certain discrepancy regarding behaviour. That is, what one believes to be the right thing to do and what one really does in reality is different.

The results of the questionnaire show that, with regards to the hospital in the Piemonte area, the doctors’ difficulty in establishing complete communication with patients is a problem that continues to persist. At least this is so with neoplastic pathologies that were the subject of our study, and only about half of the patients interviewed can be considered quite well informed on their illness.

In comparison with other studies, that evaluated the degree of information given to women affected by breast cancer, it was shown that there was a 90% awareness against the 48% we obtained in lung and gastro-enteric cancer.¹²

There could be many causes for this variation. One of the main reasons is the location of the cancer: breast cancer requires surgical intervention that is visibly mutilating and therefore obliges the doctor to accurately transmit the information regarding the devastating effects of the operation on the patient. With such pathologies the doctor is facilitated by the curability and the prognosis of such tumours if early diagnosed. The self help groups held by women who have been operated on the breast have stimulated the doctors and society to be more aware of the problem and the importance of comunication and relationship during the course of the illness.

With regards to lung and gastro-enteric cancer, the ‘internal’ location of the illness and the often fatal prognosis makes the relationship difficult to manage for the doctor when confronted with information that evokes extreme anxiety.

When considering this data it is shown that it is ever more necessary to have medical training about the communication theme.

Not only doctor—patient themes will have to be addressed, but also the problems in relationship with families and, within the team, the various aspects of communication among the members of it, in order to avoid a discontinued, contradictory, confused flow of information given to the patient.

Dr.ssa Giuliana Ritorto
Centro Oncologia ed Ematologia Subalpina (COES)
Ospedale San Giovanni Battista Molinette
Corso Bramante 88
10126 Torino
Tel 011 6334791-3