In recent years, the importance of whether cancer patients know the truth about their disease has been demonstrated, particularly in controlled trial studies of cancer care research. In Japan, however, there is widespread doubt about the need to inform cancer patients, so informing patients of their diagnosis has not yet become fashionable, and techniques for discreetly knowing the truth about cancer have been slow to develop. Almost all university hospitals do not have oncology departments, and there are no corresponding educational courses on the right to know. For these reasons, in January 1996, we established a code of practice to guide how to frankly discuss the disease and diagnosis with cancer patients, and we have begun using this code at the National Cancer Center Hospital in Japan. This version is a revision of the September 1996 version.
It is less controversial that patients should be told the truth when cancer is diagnosed. The debate has centered on how to improve the quality of communication with patients, such as how best to tell the truth and give them the best support. There is growing criticism that hospitals are not being careful enough to tell patients about their diagnosis. Therefore, we have established guidelines on how to tell patients the truth, focusing on the patient’s psychological reaction to learning the truth and the issues that may arise. It is hoped that these guidelines will help physicians improve their knowledge and skills in this area.
Basic Considerations
Basic principles
1. The diagnosis of the condition must be discussed with the patient first at all times.
2. Whenever possible, the same physician should treat the patient, from initial contact to the final treatment plan. Really ensure that the patient makes a calm choice between multiple treatment options. If it is necessary to change doctors in the middle of the process, be careful not to break the harmony reached with the patient.
3. The location of the conversation with the patient must be carefully chosen to provide a private environment where the patient can fully express his or her emotions. The news should never be communicated over the phone, in the aisle or in any public place. It has been reported that 55% of patients notified by phone of a cancer diagnosis show negative emotions. Cancer patients and their families who are hastily informed may not be able to forgive their doctors for their careless attitude.
4. Once informed of the disease, the doctor should consistently tell the patient as much information as possible. Do not make a diagnosis without definite information. Slowly transition from “suspicion of cancer” or “possibility of cancer” to the final cancer diagnosis.
5. Do not give a lot of facts regardless of the patient’s status, even though accurate explanations are necessary. Be prepared to explain the facts concisely. Do not expect the patient to be able to cope with all situations.
6. Patients are sometimes told, “You have reached an advanced stage of cancer, there is nothing I can do, and treatment for your condition is ineffective.” This cruel attitude can lead to despair, anger, abandonment and emotional detachment. Doctors should be aware that their words and attitudes can lead to both hope and despair. Doctors should emphasize other positive parts, such as supportive therapy, rather than abandoning patients to a negative state.
7. Usually the doctor will inform the condition during the outpatient visit and should leave enough time to explain and deal with the follow-up situation. When the patient is very anxious, a psychiatrist should be consulted. After completing the outpatient consultation, another conversation or phone call for encouragement on other occasions can sometimes be very effective.
8. Patients sometimes have reservations or are afraid of their doctors. As a result, some patients are unable to express their emotions after being informed of their condition or are afraid to ask questions, believing only that they should obey what the doctor tells them. Some patients, however, are more likely to talk openly to the nurse or ask questions. Therefore, the doctor should listen to the patient’s true emotions and complaints through the nurse. In this case, the cooperation between doctors and nurses is very important.
9. Do not rush to explain all the details in a moment. It is recommended to have several conversations with the patient and discuss the diagnosis step by step.
10. It is important to put yourself in the patient’s shoes and not to evaluate the patient’s reaction prematurely.
Principles that can be used by family members
1. In principle, cancer family members should not be told before telling the patient. Family members do not want to keep the patient informed and may fear that “the patient will commit suicide out of fear or shock.” Then, this risk, although it needs to be considered, is much lower than is usually believed.
2. If the family says that the previous hospital treatment told the family and strongly opposed to telling the patient himself, more time should be spent to constantly encourage family members to change their minds. Be careful not to complain about the outdated methods of other hospitals and not to destroy the harmony between doctors and patients.
3. The role of family in cancer treatment is very important. When cancer is diagnosed, the ideal situation is to inform the patient and his family members together. Although the patient should be told as a priority, it is also very important to let the family know the patient’s status.
4. Family members are sometimes more anxious than the patient and cannot remember or understand the doctor’s explanations well. Therefore, do not take for granted that “families will be stable when they know the bad news because they are not the patient.” Families should also be supported when necessary.
Discussing a cancer diagnosis in different contexts
A. Before diagnosis is confirmed
1. When physical abnormalities are found through examination
1）Patients have mixed feelings at this time, they want to be told “you don’t have cancer”, but they also feel anxious about “I may have cancer”.
(2) The test results should be described in simple language. You should also explain what further tests are needed and how these tests can help in the diagnosis.
3) State the name of the disease for which further testing is needed and the possibility of cancer needs to be discussed. It is best to use the word “cancer” in the first discussion.
2.When the symptoms are obvious
1）When the patient is suffering from symptoms with anxiety, or when he/she avoids the inquiry due to fear, he/she may be too nervous to fully understand the diagnosis and explanation given by the doctor. In this case, it is necessary to give a more careful explanation.
2) Explain the possible pathological conditions indicated by the symptoms, mentioning that cancer is included in the control diagnosis.
3) Provide an explanation of the tests and procedures that preceded the making of the diagnosis. At the same time, actively manage symptoms such as pain, fever, sputum and cough to reduce symptoms.
B. When the diagnosis is confirmed
1. It is reported that the patient’s anxiety level suddenly peaks during the period from the initial consultation to the cancer diagnosis before being informed of the cancer.
2. When the test confirms the presence of cancer cells, vague terms such as “abnormal cells” should not be used. It should be clearly stated that “cancer cells have been detected through historical data and you have cancer.”
3. When cancer is diagnosed, do not unnecessarily increase the patient’s anxiety by saying, for example, “You should accept the fact as soon as possible, or your condition will get worse.” Patients need time to prepare for hospitalization.
Patients’ complaints
A study by Yoshizawa from the National Cancer Center Hospital in Japan revealed the following complaints from patients.
1. overly technical explanations.
2. Wanted to be explained in simpler language.
3. Wanted to be told certain specific conditions rather than general information.
4. Giving too much information.
5. Wanted a more caring explanation that would give them hope and security.
Learn the skills to tell patients the truth
In order to honestly tell patients the truth about cancer, it is necessary to master the skills to discreetly convey the skills to change the news in order to give patients support. Telling the truth without learning these skills is like performing surgery without post-operative management. Observing the clinical interviewing and informing skills of experienced physicians can help improve skills in this area.
Patients’ psychological reactions to learning the truth and psychological support for patients
Factors associated with the stress response
The following factors can be associated with a patient’s psychological reaction to learning the truth.
1. The patient has many symptoms during the diagnosis.
2. Family problems, such as marital problems.
3. Little support from those around them.
4. The patient feels that his or her doctor is not caring.
5.Patients have a history of mental illness (especially depression)
6.Patients are prone to anxiety.
7. The patient has pessimism.
Evaluating these factors can help to reassure the patient.
Psychological response of patients undergoing cancer treatment
Holland and Rowland developed the following model to summarize the stages of patients’ reactions to learning the truth.
A. Stage 1: Early Reaction / Within a few days
Patients do not believe the news of cancer or temporarily deny the fact. Some patients look back on this period as, “My brain stopped working, as if this was not happening to me.” It also includes experiences of despair, such as “I heard exactly what I was afraid of.”
B. Stage 2: Depression Period / 1C2 weeks after
Patients repeatedly exhibit symptoms of anxiety, depression, insomnia, loss of appetite, and decreased concentration. Due to anxiety and decreased concentration, the patient will often ask the same questions.
C. Stage 3: Adjustment period / after 2 weeks – 1 month, sometimes 3 months
Patients begin to face the facts and start or try to adapt.
A survey on 112 patients showed that 9-11 of them needed more than 1 month to recover from the shock that cancer brought them. This suggests that the degree of shock and the time needed to recover is not always correlated with the stage of the disease.
Anxiety and depression
Anxiety and depression were the most common phenomena for patients who were unable to adapt after crossing the above 3 stages. When symptoms of anxiety and depression (e.g., anxiety, despair about the future, irritability, insomnia, and loss of appetite) are present for more than 1 month, do not assume that this is a “normal reaction for cancer patients. At this point, the patient’s psychological state should be extremely supportive. These symptoms are very important issues for cancer patients and more time should be given to support them.
Psychological support and the role of the psychologist
1. The doctor should clearly tell the patient about the diagnosis of the disease and also needs to be prepared to care for the patient’s psychological state. When the harmonious relationship between the doctor and the patient is strengthened, the patient will rarely have abnormal mood swings.
2. However, when the doctor’s support alone also looks insufficient, or when the psychologist is better suited to handle the situation, or when the patient’s psychological condition is difficult to understand, a psychologist needs to be contacted for a reasonable assessment. For example.
1) When the patient has a history of mental illness
2) High risk of suicide
3) Insomnia that cannot be controlled by medication
4) Changes in attitude or behavior compared to previous ones
5) Patients complain of depression, hopelessness/despair, anxiety or irritability
6) Patients are very worried about their prognosis
Summary
Telling patients the truth is the first step in cancer treatment and is an essential element of modern medical practice. In order to improve the quality of patient-physician communication, we have created this set of guidelines to address two aspects: explaining what to look for in a cancer diagnosis and paying attention to the patient’s psychological reactions and providing the necessary support. In the future, we will evaluate the effectiveness of these guidelines for clinical practice and work to identify more effective ways to tell the truth about cancer.