European Journal of Surgical Oncology 1998; 24:188-199
EDUCATIONAL SECTION
Breaking bad news Peter Maguire CRC P,wchological Medicine Group, Stanley House, Christie Hospital, Manchestel; UK
The way in which news about a cancer diagnosis or recurrence is broken can have a profound effect on the patient's psychological wellbeing. When the information given is perceived by the patient as too much or too little and resultant concerns remain undisclosed and unresolved there is a high risk that the patient will develop clinical anxiety and/or depression. Guidelines are provided, therefore, to help them appropriately. Strategies are also suggested which will allow the patient's concerns to be elicited in an efficient but caring manner.
Introduction Up to one third of patients with cancer develop an affective disorder (major depressive, generalized anxiety or adjustment disorder) as a consequence of their diagnosis and treatment. So, a key question is how does the way in which clinicians break bad news and respond to their patients' reactions influence patients' psychological wellbeing? Recent research has highlighted the importance of two factors: the extent to which patients perceive the information they received was adequate to their needs and how successful the clinician was in eliciting and resolving the concerns provoked by the bad news.
to treat them rather than their General Practitioner or specialist nurse, the consultant's role is paramount.
Elicithlg and responding to patients' concerns However well bad news is broken it is bound to leave patients with major concerns about their predicament, whether these are physical, social, psychological or spiritual in nature. The number and severity of patients' concerns following a bad news consultation are highly predictive of later affective disorders.-' So, it is important to consider how, after breaking bad news, a surgeon can best elicit and respond to the concerns that patients now have.
What happens hi practice Perceived adequacy of information The extent to which patients perceive that the information given them about their diagnosis and treatment was adequate to their needs has been found to be a predictor of whether or not they develop a depressive illness and/or anxiety disorderJ Patients who perceive that they had less information than they needed or too much before they were ready for it fare equally badly.-' A study of patients' preferences found that over 80'7o wished to know about their diagnosis, chance of cure and adverse effects of any treatment. ~ However, a substantial minority did not want detailed information about their condition or chance of cure. Men with advanced disease, who were 64 years of age or over and came from a deprived socio-economic background were least likely to want detailed information. The problem, therefore, is how surgeons can first identify a patient's need for information in order to tailor what information they then disclose. Since the majority of patients (60% or more) want to hear the diagnosis from the hospital doctor who is going 0748-7983/98/030188+ 12 $12.00/0
Direct observation of bad news consultations by radiomicrophone recording has found that most cancer specialists, including surgeons, make assumptions about what patients know already. Consequently, patients are given more information than they wish to have. Sometimes, specialists withhold information because they think the patient will not be able to cope with it. Yet, in reality, the patients want to have the information and would have coped with it. The breaking of bad news naturally causes great distress. Surgeons, like other specialists, tend to respond by reassuring the patient immediately that they can at least control if not cure the disease. This rush to reassure the patient is done in a genuine belief that it helps the patients adjust and fosters hope. For example: Surgeon: I guess from what you said you have been worried that this lump could be cancer. Patient: Yes. Surgeon: The tests have proved that it is cancer. The good news is that we have caught it early. It is very localized. © 1998W.B. SaundersCompanyLimited
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Patient Existing concerns confirmed New concerns provoked
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Doctor Acknowledges distress
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Establishes concerns and associated feelings Asks patient to prioritize them Checks information need
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Fig. I. There is no evidence of spread to your lymph nodes. in view of this I think you should be all right. I suggest that we proceed with a wide local excision, that is, we cut the lump out and a bit of the surrounding tissue. We will then give you radiotherapy as an insurance. Patient: But that is what they told my sister. Surgeon: How do you mean? Patient: My sister developed breast cancer only 2 years ago. She was told by her surgeon that her chances were good. She died 6 months ago. How do I know I am not going to go the same way? Surgeon: As I have already told you we caught your disease early. 1 am confident that the combination of surgery and radiotherapy will do the trick. Patient: How can 1 be sure? As a consequence of this consultation the patient's worries about dying prematurely like her sister were exacerbated. She became increasingly preoccupied with images of her sister's death. She had nursed her sister for 3 months prior to her death and seen her lose a lot of weight, become incontinent and totally dependent on others. She was terrified that the same fate would befall her and became increasingly anxious and depressed. The surgeon believed that his reassurance had worked. He did not realize that unless he first elicited her concerns he could not pitch any reassurance at the right level. A major question is why surgeons committed to the care of their patients offer immediate reassurance instead of first acknowledging the patient's distress and eliciting any underlying concerns (Fig. 1).
Clinicians admit they are worried that if they ask how a patient is feeling after breaking bad news it will be perceived as a banal question ('Of course 1 am distressed'). However, overt acknowledgement of their distress makes it legitimate for patients to disclose that they are worried. This gives the surgeon an opportunity to explore the reasons for the patient's distress. Most surgeons believe that if they ask questions about the patient's concerns it will unleash strong emotions like despair, weeping or anger. Some are concerned that they will not be able to contain these and will harm the patient psychologically. Moreover, if they get into effective dialogue patients will be encouraged to ask difficult questions like 'How long have I got?' or 'Why wasn't it diagnosed sooner?'. Also, probing for patients' concerns will take time and this may dislocate their clinics. They may get too close emotionally to their patients, thus hampering their ability to make objective decisions. Offering immediate and positive reassurance after breaking bad news, therefore, is perceived as the optimal strategy. Surgeons offer two other reasons for not probing patients' concerns. First, they blame a lack of training in key interviewing skills, especially those required to elicit and explore patients' concerns and feelings without taking up too much time. They feel they have been given little help and guidance during their surgical training in how to manage difficult communication tasks like breaking bad news? Second, they worry that if they adopt a more psychological way of working they will not get the support of their colleagues. • When patients remain distressed after the breaking of bad news surgeons console themselves that 'the pieces' will be picked up by others, particularly specialist cancer nurses or General Practitioners. This ignores the programming effect their behaviour has during the bad news consultation. If they do not try to elicit patients' concerns, patients assume that other health professionals subsequently involved in their care will be no more interested than the surgeon. Thus, if a nurse tries to establish how a patient has reacted to the bad news the patient will assume she is not interested in her concerns and will not disclose them. It has been suggested that patients may benefit from having audiotapes provided which allow them to re-run the bad news consultation. While this helps where the prognosis is good, it affects psychological adjustment adversely when the information given suggests a bad prognosis. There is, therefore, no substitute for the surgeon trying to get the bad news consultation right in the first instance. Guidelines are now provided to enable busy surgeons to establish patients' information needs quickly and tailor the extent to which they break bad news accordingly. These guidelines also suggest efficient ways of eliciting patients' responses to the bad news, and then exploring and resolving the resulting concerns.
Breaking bad news Checkhlg awareness First, establish patients' perceptions of their situation instead of relying on the referral letter or comments from
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Educational section
other team members. After taking a history of the presenting symptoms ask 'What are your views of what might be wrong?' and 'How do you feel about it?'. Showing direct interest in patients' perceptions and feelings educates them that you are interested in them as persons and will promote later disclosure of their concerns. Thus, when taking a history of a breast lump a patient may readily admit she is terrified her lump might be cancerous. Your breaking of bad news will then confirm what she has worked out. When your questions about perceptions indicate patients have little awareness it is important to 'test the waters' to determine if they are ready to have such information. Do this by firing a 'warning shot' and proceed according to the patient's responses. Be especially alert to patients indicating that they wish to pull out from further information giving and respect this: Surgeon: When you got this pain in your tummy did you have any thought as to what it might be? Patient: I thought it was just an ulcer. It seemed to get better with Xantac. Surgeon: Was there any time when you thought it might be anything else but an ulcer? Patient: No. Surgeon: I am afraid to tell you that it looks more serious than an ulcer. Patient: What do you mean? Surgeon: When we did the gastroscopy and took a biopsy from your tummy it showed some abnormal cells. Patient: I don't want the detail, just tell me what you can do for me. The patient indicated that he does not want further information about diagnosis but wishes to know what treatments might be offered. Other patients might have responded by saying 'What do you mean, abnormal cells?' and signalled a wish to proceed through the truth-telling process until the fact they have cancer is disclosed.
am frightened a colostomy will make things so much worse.
Surgeon: So, you are upset about the possibility you may need a colostomy and the effect on your marriage. We can talk about that in a minute. Patient: Yes. Surgeon: Any other worries that are bothering you? Patient: No. You should then put these concerns into priority order by asking the patient to indicate which they want to start with. Surgeon: You have mentioned you are worried you will need a colostomy, and about the effect of this on your relationship, particularly as things have not been so good lately. You said you felt hopeful we could do something. Where would you like me to begin? Patient: Can you tell me what treatment I'll need and what my chances of cure are? As with most patients, the priority here was to understand the treatment options and chances of cure. Whether and how to involve patients in decision making will be the subject of a future article.
ExplorhTg patients' concerns While patients need to feel that the nature and extent of their concerns about their predicament have been understood they are not looking for immediate resolution. Even when their concerns cannot be resolved patients feel better psychologically if they know the treating surgeon has understood these. Only when patients' concerns have been fully elicited should you give information and advice.
Factors affecting the breakhTg o f bad news AcknowledghTg a patient~ distress and elicithlg concerns There is no way you can soften bad news. So, patients will show signs of verbal and non-verbal distress. You should acknowledge this distress and invite patients to say what the reasons are. Avoid offering reassurance, information and advice until you have elicited all your patient's main concerns. Surgeon: I am sorry to have confirmed that you have got cancer. I can see you are very distressed. Would you mind telling me what is distressing you? Patient: Isn't it obvious? Surgeon: Well, people react differently to such news. It's important 1 check just what worries you have so 1 can try and help you with them. Patient: When you said it was cancer, I felt hopeful you could do something but I am terrified I am going to need a colostomy. I don't think I could handle that. I am worried my husband will go offme once I have a colostomy. Our relationship has not been good of late. I have been so tired and couldn't be bothered. I
Ideally, bad news should be broken in private. Negotiation should take place with the patients about whether they wish to speak to you alone or with a relative present. Ifa relative is present it may stop patients disclosing key concerns because they wish to protect the relative from undue distress. It is better to talk to patients first and then negotiate with them if they wish to have relatives present to talk through their concerns and treatment options. If bad news is broken effectively it may provoke the patient to ask difficult questions, cause the patient to realize that they face an uncertain future or request that key relatives and friends are not told the diagnosis. Ways in which these difficult situations can be managed will be discussed in further articles.
Validation When bad news is broken in the way described patients feel more able to cope with their predicament and are less likely to develop high levels of distress and affective disorders.
Educational section
They feel grateful that the surgeon has taken the trouble to be alongside them in their predicament before giving information and advice. In subsequent consultations they will be much more likely to disclose key concerns spontaneously.
Acknowledgement The Cancer Research Campaign supported the work on which this article is based.
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References 1. Fallowfield LJ, Hall A, Maguire GP, Baum M. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. Br MedJ 1990; 301: 575-80. 2. Parle M, Jones B, Maguire P. Maladaptive coping and affective disorders in cancer patients. Psychol Med 1996; 26: 735~.4. 3. Meredith C, Symonds P, Webster L, Lamont D, Ryper L, Gillis CR, Fallowfield L. Informational needs of cancer patients in West Scotland: cross sectional survey of patients' views. Br Med J 1996; 313: 724-6. 4. Maguire P, Faulkner A. How to do it: improve the counselling skills of doctors and nurses in cancer care. Br Med J 1988; 297: 847-9.
Self-assessment exercise Based on the Educational Section in the April 1998 issue. 'Hypercalcaemia in patients with cancer: aetiology and treatment' by Steven D. Heys, lan C. Smith and O. Eremin (Answers given on p. 198) I. Hypercalcaemia is a relatively uncommon metabolic disorder in patients with cancer. 2. Hypercalcaemia, when present in patients with cancer, is seen in all types of tumours (solid and haematological). 3. Hypercalcaemia appears to have little prognostic relevance in patients with malignant disease. 4. Although the precise mechanisms underlying hypercalcaemia are not entirely clear, increased absorption of bone as a result of locally produced factors (e.g. interleukin I and 2, transforming growth factor a) are important in up to 30% of patients with cancer. 5. Systemic factors are believed to play a key role in most cases of hypercalcaemia. In particular, increased production of parathormone is thought to be crucial. 6. All patients with hypercalcaemia should be treated. 7. Bisphosphonates have significantly improved the therapy of hypercalcaemia in patients with cancer. 8. Other forms of therapy are available and can be beneficial.