Breaking Bad News to Cancer Patients and their Families
Summary
Informant, recipient and environmental factors can affect the effect of communication, especially during the emotionally laden event such as breaking of bad news. Bad news has to be broken softly, as much and as fast as the patient would like to know. Non-verbal gestures of both the doctor and the recipients are important in communication. The recipients should be encouraged to ask questions and express feelings. Family physicians should be familiar with the psychological and physical responses of receiving bad news. Good doctor-patient relationship is the mainstay of management. Uncertainty about length of life can be acknowledged. Collusion should be avoided. Denial and ambivalence should be handled with patience.
Introduction
Family physicians make diagnoses and inevitably are involved in breaking bad news of sinister diagnoses to the patients and families, e.g. new diagnosis or recurrence of cancer. Inappropriate dialogue can lead to enormous sufferings to all parties concerned. The goals of this sort of communication are to let the patients and families understand fully the nature of the diagnosis, the treatments available, the effects and side effects of treatment and prognosis of the condition while minimising the sufferings arising from reception of the bad news. The key is to break the news in a way that facilitates acceptance and understanding while minimising the risk of provoking denial, ambivalence, unrealistic expectation, overwhelming distress or collusion, so that they can cope with the challenges ahead of them.2
Barriers affecting communication
Many factors can affect communication between two parties. These are particularly so if the content of communication are emotionally laden. If these barriers can be recognised, attempts can be made to circumvent them to lead to an effective communication.2
Some doctors find it difficult in discussing with their patients on matters related to death and dying. Different doctors may have different reasons. To remove the barrier, we must self-aware and address the issues specific to us. Table 1 shows some feelings of doctors which may affect their ability in communicating with patients and families.3
Table 1: Adverse feeling of doctors on breaking bad news.2
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Fear of hurting or upsetting the recipient. Fear of adverse response from the recipient. Uncertainty about how to react to the recipient's reaction. Fear of being blamed. Shame and feeling guilty of self-inadequacy and impotence. Worry over the questions they may be asked. Anger of mistakes made by patient or family. Anger of non-compliance made by patient or family. Anger of mistakes made by other health professionals. Sadness which we, as professionals, tend to suppress in front of patients. |
A comfortable environment can help in reducing the suffering of the patient. It is best to conduct the interview in a warm quiet room with privacy.2 Both doctor and patients are seated without any object in between. Someone else, such as a nurse, of the same gender as recipient can be present to give some emotional support and reinforce the information given after the doctor has left.2
If possible, it is preferable to interview both patient and relative together. Before the interview, check who everyone is. Sit and lean forward. Face the recipient with eyes at the same level. Keep eye contacts. To show that we appreciate the interview, we have to be seen to be unhurried.2
Speaking
Patients prefer gentle truth. The emotionally negative words have to be soft, e.g "The test result is not so good." Speak clearly and slowly in a pace according to the recipient’s ability to absorb.5 Use simple words and avoid jargons. Repeat important points. Use drawings, diagrams and leaflets to reinforce.3 From time to time ask if the recipient understands. Use open questions. Try to ask the recipient to summarize what was said. Accept denial but do not collude with it. Do not argue or critisize other colleagues.3
From time to time, establish what the recipient knows. Doctors sometimes underestimate what a recipient already knows, but sometimes, overestimate and say too little. Therefore, we must assess how much the recipients want to know. Do not give more information than is wanted. Some people are particularly slow in understanding and assimilating what is told. Information may sometimes have to be given in a number of sessions (information by instalment).
Active Listening
Listen attentively to what the recipients speak. Acknowledge by nodding or responding with "yes", "I see". Ask questions to clarify unclear points but refrain from too much interruption when they are speaking. Encourage the recipients to tell more in detail, such ass by "and?", "Then what?", "Can you tell me more about that?" Also encourage them to express their feelings and concerns.5 Be empathetic and express an understanding of their feelings in relation to certain events. "You are frustrated because you have the cancer back again after so much sufferings of treatment before." It is destructive to discount their feeling such as by saying, "You do not need to be so sad". Paraphrase from time to time to let them know that they have already been listened fully and understood. Do not be afraid of silence. It lets the speaker to organise what are to be said and how to say them.6
Encourage them to ask questions. Make sure that every question is answered. It is alright to show ignorance and uncertainty. Acknowledge that uncertainty is often a painful and difficult state to cope with. Listen for the buried questions. Sometimes, the question was asked not for an answer, but as a method of expressing their emotion, because they already know that no one knows the answer such as "Why it is me who have the cancer at this time when I have just retired?" Being with them and listen to it is already enough.6
Non-verbal Communication
Be sensitive to the recipient’s non-verbal communication.5 It accounts for eighty percent of communication. Much of it is involuntary and it reflects our most hidden feelings.2 Touch the recipient if appropriate.7 Holding the hands is often a sign of care to the recipients, except for a few conservative elderly Chinese. It is alright to express our own feelings, and even to weep.2
Winding-up
At the end, summarize the recipient’s concerns and problems to show that we have a good understanding of their problems.5 Assess the presence of other stressors. Put the problems and concerns into a list. Ask the recipient to arrange them in order of priority. Identify the recipient’s coping ability and resources available. Be clear about the plan of action for each problem. Explore the options with the patient. Let the patient make decisions. Offer further meetings or channels of communication. Give telephone number of support groups or other sources of information.3 The referral should not be seen as a sign of rejection, but as an additional source of care. Reassure them of our continuous availability and support.
Do not predict when the patient will die. The question can be responded by acknowledging uncertainty and difficulty in prediction.8 It can cause difficulties for the patient. Ask the patient for the reason of knowing when to die. Discuss the issue. We can offer to tell them symptoms that would herald further deterioration, such as weakness, breathlessness and anorexia. They should be encouraged to make the most of the remaining time. Do not give false hopes but be optimistic. Reassure them that usually something can be done to improve the quality of life or to relieve symptoms.1 Encourage to live one day at a time.
It is usually an act of love driven by the need to protect the patient from painful truth. However, there can be some other reasons. Explore and respect the relative’s reasons. Explain to the family the importance of good staff-family-patient communication and relationship and the possible results of collusion.8 The conspiracy of silence is a source of tension. Fear of disclosure leads to poor communication and the patient will suspect. What happens confirms the patient’s suspicion is right. This decreases trust, causes poor relationship, introduce stress in the family and poor cooperation. It also blocks discussion of the future and preparation for parting.
Explain to the family that the patient has the right to know the truth and to decide how much the doctor can let the family know. The family cannot forbid the doctor from discussing diagnosis and prognosis with the patient.1 We can promise to give information according to the patient’s need.8 Joint interview with patient, doctor, family and nurse present can prevent collusion and conspiracy of silence. During the joint or individual interview, talk with patient and assess his needs and wants, how much he would like to know, how much he already knows and what he is suspecting.
Collusion has to be broken as soon as it becomes a problem, otherwise important unfinished business will be left unresolved, symptom control of patient would be poor because of anxiety or depression. Abnormal grief on the part of the bereaved may occur after the patient dies.8
Again, it is an act of love to protect the beloved partner from painful truth, The approach is the same as in collusion by the relative and aims to bring the couple together so they can talk through any mutual problems.1
Reactions on Hearing Bad News and their Management
The patients with advanced cancer may undergo bereavement because of the anticipated imminent loss of life or bodily function, their beloved ones and treasured possession. More marked responses may be seen on diagnosis, at first recurrence, at each major sign of disease progression. The family may also undergo anticipatory grief before the patient’s death.
Good doctor-patient communication and relationship is the mainstay of management. Explain the normality of physical and psychological responses to bad news. Allow time for adjustment. Listen to the patient and family. Ask open questions about the patient’s feelings. Encourage expression of feelings because sharing is a form of giving to others and a source of self pride and joy. Help the patient adjust in the best way possible, given that particular patient’s background.
The patients can be guided to look at the gains, such as improved relationship, intimacy, feeling of being important and concentrate in the close circle of people. Focus in life can be changed from achievement to existing, giving to receiving, controlling to accepting being powerless, tomorrow to today. They may sometimes need anxiolytics and antidepressants.
The recipient may not have all of the responses mentioned below and they may not occur in the same order as listed. We must anticipate these problems, try to identify them after breaking the bad news and manage them accordingly.
On receiving an unexpected bad news, the recipient may be shocked. He becomes emotionally numb, pre-occupied, disorientated, has poor concentration and poor memory. He needs time to digest. We have to be patient and listen to what he says.2
It is a way of resolving the conflict between the wish to know the truth and the wish to avoid anxiety. It is a kind of defence mechanism. If he refuses to continue the dialogue, we have to try again later. It has to be intervened if it interferes with treatment, relationship and planning for the future.8 In order not to disrupt the fragile defences, the challenge should be soft by way of asking the patient to give an account of what has happened. His feeling is then explored at each key point. He can also be asked for other possibilities at each key point in addition to his interpretation. "I understand that you feel it is an …, but is there any time when you consider it may not be so simple?"8 Any inconsistencies between the patient’s experience and perception can then be challenged. With time, denial will become less intense.
The recipient appears to accept the bad news, but later behaves as if he has not heard of the bad news. He just goes in and out of reality and denial over time. The difference between the reality and the denial can be confronted softly by asking “I wonder which of these you wish me to work with?” If the patient responds with an excuse, then, the denial has to be accepted at that point. Over time, the time in denial tends to decrease as the patient becomes more convinced of the reality of their situation.1
The recipient tends to blame others. The anger is directed towards the doctor who breaks the news, sometimes with reasons, but often just because he is available.2 If the anger is displaced on the family or staff, it tends to interfere with treatment, adjustments and care. We have to be patient and listen. This may be the need of the patient to express his emotion. If the anger is too devastating, the session might need to be terminated and try again another time. Sometimes, the patient directs anger on himself or herself for real or imagined omission. Such guilt requires much patience and listening. If the patient refuses treatment as a form of self-punishment, referral to a counsellor should be considered.
Bargain
The patient may try to find ways to avoid death or to prolong life. They will try any methods which would give them some chance, no matter how slim it is. They have to be protected from false claims of management which may cost the patient and family financially and disappointment after the false hope vanishes at last.
Sadness
The response is usually not severe enough to be called depression. The patient tends to be sad, despair and readily cries. He may have early waking, decreased activity, self-neglect and becomes detached from the surroundings. He feels helpless, hopeless and worthlessness. However, he may try to hide his negative feelings or request euthanasia. Accompaniment with empathetic listening is the best treatment.
Acceptance
After a period of time which varies among individuals, the patient may begin to let go of negative feelings and begin to have a feeling of relief.
Indications for Referral
The patient or family has to be referred if we find the situation is beyond our capability to handle. Some referrals are clearly indicated such as presence of suicide tendency. When we think that some people can handle the situation better or more appropriately to the benefit of the patient or family, we should consider involving them. Good palliative care service can never be provided by one person. Teamwork is a norm. A social worker, counsellor or chaplain are suitable persons to give psychological and spiritual supports. A person with personality disorder exacerbated by cancer has better be managed by a psychiatrist.4
Apart from formal referrals, any member of the team, such as physiotherapist, community nurse and volunteers visitors or home helpers who are patient and can listen attentively are invaluable in supporting the patient and family through this sort of crisis. Because of this role ambiquity, a good mutual understanding and an effective communication among the professionals and formal helpers are essential for everyone to contribute. All are integrated in the best approach to care.9
Finally
Be alert to our own feelings. Debriefing sessions and colleague support may be very valuable.2
References:
Faulkner A, Maguire P and Regnard C, (1994), Breaking bad news - a flow diagram. Palliat Med, 8:145-151.
Hull R, (1994), A Pocket Book of Palliative Care; McGraw Hill Book Company: Sydney; Ch 12, pp 82-88.
Franks A (1997), Breaking bad news and the challenge of communication, European J Palliat Care, 4(2):61-65.
Woodruff R, (1996), Palliative Medicine, 2nd edition, Asperula Pty Ltd: Melbourne, pp 300.
Maguire P, Faulkner A, (1993), Communicating with cancer patients: Handling bad news and difficult questions. In: Dickenson and Johnson (Eds.) Death, dying and bereavement (Ch 36, pp 180-185) London: SAGE.
DeVito JA, (1992), The Interpersonal Communication Book, 6th edition, HarperCollins Publishers: New York, pp 63-65.
Buis C, de Boo T, Hull R, (1991), Touch and Breaking Bad News, Fam Pract, 8:303-4.
Maguire P, Faulkner A, (1993), Communicating with cancer patients: Handling uncertainty, collusion and denial. In: Dickenson and Johnson (Eds.) Death, dying and bereavement (Ch 36, pp 186-191) London: SAGE.
Doyle D, Hankes GWC, Macdonald North, (1993), Oxford Textbook of Palliative Medicine, Oxford University Press: New York.
Key Message:
1. Attention has to be paid to the informant, recipient and environmental factors on breaking bad news.
2. Give as much information as the patient would like to know and as fast as he can understand.
3. Assess from time to time the understanding and feelings of the patient.
4. Non-verbal gesture such as eye contact and touch is as important as verbal content of communication.
5. The strategies are determined by the patient's response and not decided unilaterally by the doctor or nurses.
6. It is alright to show ignorance and uncertainty. Do not make too much prediction.
7. Collusion, denial and ambivalence have to be handled sensitively and sensibly. Collusion have to be avoided as far as possible.