| Japanese Journal of Clinical Oncology | Pages |
Introduction
General matters to consider
Basic Principles
Approaches to the Family
Discussing the Diagnosis of Cancer in Different Situations
Patients' Complaints
Learning Skills to Tell Patients Their Diagnosis
Psychological reactions of patients who were told cancer had been diagnosed and the support of such patients
Factors Associated with Stress Reactions
Psychological Reactions to Being Given a Cancer Diagnosis
Anxiety and Depression
Psychological Support and the Role of Psychiatrists
Conclusion
Acknowledgments
References
Guidelines for Telling the Truth to Cancer Patients
Editorial Comment: The article Guidelines for Telling the Truth to Cancer Patients was published in Japanese in 1996, in response to growing recognition of the necessity to establish such guidelines. These have been widely used, not only at the National Cancer Center, but also some other hospitals in Japan. It seems timely to publish the English version of these guidelines because the contents of this journal are now on the Internet. We would like also to take this opportunity to invite criticism by readers abroad, to enable us to improve these guidelines further.
Recently, the importance of informed consent has been recognized especially in the context of a controlled trial in cancer care. However, the trend towards full disclosure of the diagnosis and the skills in telling the truth and breaking bad news to cancer patients sensitively have progressed extremely slowly in Japan, since there remains widespread skepticism of the need for informed consent in cancer patients. As a result, almost no university hospital has an oncology department or an educational program that gives credence to informed consent for clinical oncology procedures (1). For these reasons, in January 1996, we established guidelines for frank and truthful discussion of the diagnosis with cancer patients and started to use these at the National Cancer Center. This is the English version of the second edition revised in September 1996.
There is now little doubt that patients should be told when cancer is diagnosed and the focus of debate has turned to improving the quality of communication with the patient, i.e. how best to present the facts and support patients thereafter. Added to this, there is growing criticism in hospitals these days of the insensitive handling of breaking bad news to patients regarding their diagnosis. As a result of this situation, we established guidelines for telling the truth to cancer patients, paying special attention to the patient's psychological reactions and problems when they are told of the diagnosis. We hope that these guidelines will be helpful for doctors who have to improve their knowledge and skills in telling the truth to cancer patients.
A. Before definitive diagnosis
B. When a definitive diagnosis has been made
An interview survey of preoperative patients by Yoshizawa (5) at the National Cancer Center Hospital showed the following complaints:
In order to tell patients truthfully and frankly about their diagnosis of cancer, it is vital to acquire the necessary skills with which the bad news can be communicated in a sensitive manner and patients can be supported once the diagnosis is clear. Telling the truth without learning these skills is like performing surgery without learning postoperative management. Observation of experienced physicians' outpatient clinics or the way of obtaining informed consent from cancer patients might be useful to improve the skills.
The following risk factors were reported to be associated with stress reactions of patients after being told the diagnosis (6).
Evaluation of these factors may be useful in following the course of the patient.
Holland and Rowland (7) developed the following phase model of general reactions of patients who were told of the diagnosis of cancer.
A. First phase: period of early reaction/within a few days
Patients do not believe the information or temporarily deny the facts. Some patients retrospectively describe this period as, `My mind ceased to function as if these things were not happening to me'. Others experience despair, i.e. `I was told what I feared'.
B. Second phase: period of distress/after 1-2 weeks
Patients repeatedly develop symptoms such as anxiety, depression, insomnia, appetite loss or decreased concentration. Owing to marked anxiety and decreased concentration, patients repeatedly ask the same questions.
a.
The diagnosis must first be discussed with the patients themselves whenever possible.
b.
The same physician takes charge of the patient from the initial contact to the definitive treatment as far as is possible. This allows really informed consent in which the patient can calmly decide among several choices of treatment modalities. If there arises a situation where the physician in charge may change, care must be taken not to destroy the rapport with the patient.
c.
The location for discussing the diagnosis must be carefully chosen, providing an environment of privacy where the patients can fully express their feelings as necessary. On no account should the diagnosis be communicated via the telephone, or in passing in a corridor or in any public place. It was reported that 55% of patients who were told the diagnosis on the telephone expressed negative feelings (2). Patients and their families who were told the diagnosis in an inconsiderate manner may never forget the thoughtlessness of the physician.
d.
From the initial interview, physicians should try to tell the truth consistently and give as much information as they have at the time. Do not make a diagnosis with unconfirmed information. Start from `suspicion' or `possibility' of cancer and tell facts accurately after a definite diagnosis is made.
e.
Although accurate explanation is necessary, do not bombard the patient with facts without considering the patient's state. Be prepared to explain the facts as clearly and simply as necessary. Do not expect patients to cope with everything by themselves.
f.
Patients are sometimes told, `You have an advanced cancer and there is nothing I can do. There is no effective treatment in your case'. Such a cruel attitude presented by the physician causes loss of hope, anger, resignation and a sense of alienation in patients. Physicians should recognize that they can generate both hope and despair in patients by their verbal expression or attitude. Physicians should present other positive features, including supportive care, instead of abandoning a patient with such a statement.
g.
Communicating the diagnosis and breaking bad news is commonly performed at an outpatient clinic. Adequate time should be used for explanation and subsequent consideration is necessary. When patients are very anxious, the physician in charge should consult psychiatrists. Options such as talking to patients on another occasion after completing all duties at the outpatient clinic or offering encouragement by talking again on the telephone the day diagnosis of cancer is divulged can sometimes be very effective.
h.
Patients show reservation towards physicians and sometimes fear them. Therefore, some patients cannot express their feelings when told their diagnosis or cannot ask physicians questions, believing that they should obey what the physician tells them. However, some patients tend to be more frank when talking to nurses and may ask them questions about their diagnosis. Therefore, it is important for physicians to hear true feelings and complaints through nurses. Cooperation between physicians and nurses is very important in this situation.
i.
Do not hurry to explain all details on one occasion. It is recommended to have several interviews with patients to discuss the diagnosis step by step.
j.
It is important to put yourself in the patient's place and not to judge a patient's reactions prematurely.
a.
In principle, family members should not be told the diagnosis of cancer before patients are told. Families who want the patient to be in ignorance of the diagnosis may be worried that `the patient may commit suicide because of fear or shock'. However, such a risk is much lower than generally considered (3), though the risk should be constantly taken into consideration.
b.
When the patient is referred to our hospital and only the family has been told the diagnosis at another hospital and strongly opposes telling the patient the truth, the family should be repeatedly encouraged to change their minds, taking as much time as necessary. In such cases, it is important not to blame the initial physicians for their old-fashioned approach, because the rapport between the patient and the physicians may be impaired.
c.
Families play a very important role in cancer treatment. When cancer is diagnosed definitively, the explanation should ideally be given to the patient and family together. Although the patient takes priority over the family, it is very important to inform the family of the patient's state as accurately as possible.
d.
Families sometimes become more agitated than patients and cannot remember or understand the explanation accurately. Therefore, do not take it for granted that `families will be alright when receiving bad news about the diagnosis, because they are not patients'. When necessary, families should also be supported. It is often helpful for physicians in charge to ask a psychiatrist for advice.
1. When abnormalities are detected by screening or examination
a.
Patients have a complicated state of mind, a mixture of the wish to be told, `you do not have cancer' and anxiety that `I may have cancer'.
b.
Results of the screening are explained in plain language. In addition, any further examinations that need to be performed and the extent to which they will help make the diagnosis should be explained.
c.
Diseases that could be diagnosed by further examinations are named. The possibility of cancer is also discussed. It is better to use the term `cancer' from the first consultation.
2. When symptoms are present
a.
Patients who have endured symptoms with anxiety or avoided consultation due to fear may be too tense to understand fully the explanations and diagnosis given. More careful explanation is necessary in such cases.
b.
Explanations should be given for possible pathological conditions suggested by symptoms and cancer should be included in comparing diagnoses.
c.
Explanations are given about examinations and the procedures for making a diagnosis. Symptoms such as pain, fever or cough and sputum that can be alleviated by symptomatic treatment are actively treated in parallel to diagnostic examinations.
a.
During the period from the initial consultation to a definite diagnosis, patient stress levels have been reported to reach a peak immediately before they are told the diagnosis (4).
b.
When histological examination has confirmed cancer cells, obscure expressions such as atypical cells should not be used. It is preferable to explain clearly that `Since cancer cells were confirmed by histological examination, you have a cancer'.
c.
When a definite diagnosis is made, do not increase a patient's anxiety unnecessarily by saying, `You should be admitted as soon as possible or your condition will become serious'. Patients need time to prepare for hospitalization, both socially and mentally.
a.
Explanations being too technical.
b.
The wish that explanations had been given in simpler language.
c.
Desire to be told the specifics of a condition, not general information.
d.
Too much information being given.
e.
The wish that the explanation had been given with tender care that is encouraging and which offers hope and reassurance.
a.
Patients with many symptoms at the time of diagnosis.
b.
Patients with family problems, e.g. marital.
c.
Poor support from surrounding people.
d.
Patients feeling their physicians to be unsupportive.
e.
Patients with a history of psychiatric disorder (especially depression).
f.
Patients who tend to be anxious.
g.
Pessimistic patients.
C. Third phase: period of adaptation/after 2 weeks-1 month, sometimes 3 months
Patients face reality and begin to or try to adapt to the new situation.
A survey of 112 patients showed that 9 of 11 patients who required more than 1 month to get over the shock had early gastric cancer (8). This indicates that the degree of shock or the time required to get over shock is not always correlated with the disease stage or prognosis.
Anxiety and depression are the most frequent symptoms observed in patients who cannot adapt to their situation even after the above course. When anxiety and depressive symptoms (such as anxious mood, despair of the future, irritability, fear, insomnia and appetite loss) are observed even 1 month after breaking the diagnosis, do not consider these to be `natural reactions because the patient has cancer'. The psychological state of patients should be supported with great care. These symptoms are very important problems in cancer patients and adequate time should be given to them.
Telling the truth is the first step in cancer treatment and is regarded as essential in modern medical practice. To improve the quality of doctor-patient communication, we have produced these guidelines focusing on two major perspectives, i.e. general matters requiring attention at the time of explaining the diagnosis and understanding the patient's psychological reactions and offering the necessary support. It is important that in the future we evaluate the usefulness of these guidelines as applied to clinical situations and find more effective methods for telling the truth to cancer patients.
This work was supported in part by a Grant from the Ministry of Health and Welfare. We thank Dr Daya Karat for helpful comments on the manuscript.
a.
Physicians should tell patients clearly at the time the diagnosis has been explained, that, as the physician in charge, they are always ready to support the patient psychologically. When rapport is strengthened in this way, patients rarely become markedly unstable psychologically after being informed of the diagnosis.
b.
However, when support of the patient solely by the physician in charge seems to be insufficient or treatment by psychiatrists is considered to be more appropriate or the patient's psychological condition is difficult to understand, prompt contact with psychiatrists and consultation with them on appropriate measures is useful. This may apply when:
1. A patient has a history of psychiatric disorder.
2. There is high risk of a patient committing suicide.
3. Patients suffer from insomnia that is not alleviated by hypnotics.
4. There are changes in attitude or behavior that were not previously observed.
5. Patients complain of being depressed, hopelessness/helplessness, anxiety or irritability.
6. Patients are very concerned about prognosis.
References
This article has been cited by other articles:
For reprints and all correspondence: Hitoshi Okamura, Psychiatry Division, National Cancer Center Hospital, 1-1, Tsukiji 5-chome, Chuo-ku, Tokyo 104, Japan
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Last modification: 19 May 1998
Copyright© Japanese Journal of Clinical Oncology, 1998.
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