Breaking bad news

It would be unusual for a practice nurse to be the first to tell a patient that they have a terminal illness but there are many other situations when the results of tests or evidence of a deterioration in the patient’s condition can only be considered ‘bad news’. So are there any techniques to make the task less difficult?

WHY TELL THE TRUTH?

The Nursing and Midwifery Code is quite clear about one of the (many) duties of a nurse:

‘20.2: act with honesty and integrity at all times’... ¹

The General Medical Council in its publication ‘Duties of a Doctor’ makes a very similar point.² But it is not always obvious that being truthful with patients is inevitably the professional and kind way to behave. There is a long tradition of doctors telling lies to their patients. In 1672 the French physician Samuel de Sorbière considered the idea of telling patients the truth, but concluded that it could seriously jeopardise medical practice and so would not catch on.³

What do our patients want?

As an example, the majority (up to 80%) of cancer sufferers want to be actively involved in decisions about their treatment: however only 10% of patients wish to take the major role. In general patients who are younger, better educated and female are more likely to want to be involved. The desire to participate in management decisions is associated with greater optimism about outcome.⁴ Our patients cannot participate in management decisions without the necessary information to make those decisions. So, although full disclosure should be the usual thing to do, mechanisms also have to be in place to deal with the minority of patients who do not want to be told everything.

What does the patient’s family want?

It is not unusual to be asked not to divulge a serious diagnosis to a patient for fear that they will ‘give up’. There is no evidence that this is in fact the case, and such an intervention from well-wishers should be regarded just as an expression of their concern. At the end of the day your patient’s wishes (as long as your patient is ‘competent’) are paramount.

Not to be honest with patients implies a highly irregular ethical stance. Relationships of trust are invariably based on honesty, and your patient may well be entering a phase of life when having a trusting relationship with a practice nurse is a very good idea. Also if you are not fully open and truthful then your patient’s family may end up knowing more about the illness than your patient does. However a commitment to be truthful at all times does not preclude an effort to deliver the truth in as compassionate a way as possible.

‘We are brought up not to lie, especially in professional life – but equally we know that how we handle the telling of truth is crucial’.⁵

WHAT IS ‘BAD NEWS’?

It is usually accepted that revealing a terminal diagnosis will be considered as bad news. However, your patient’s concerns at the news may not be what you expect. There is of course no supportive evidence, so the actual act of dying must remain an area of belief rather than established fact. Your patients who have religious beliefs may well regard dying as something to welcome. But the process of dying creates many anxieties. Will there be pain? Will there be disability, either physical or mental? Will there be loss of control, loss of continence causing shame and embarrassment? What will my family do after I am gone, and how will they cope with my dying?

‘Bad news’ is:

'The discovery that reality is going to fall short of expectations'⁴

Using this as a definition, it is clear that almost every aspect of the work of a practice nurse involves telling patients bad news, things that they do not want to hear. It would be unusual for a practice nurse to be the first to tell a patient that they have a terminal illness. However, those involved in patient triage must sometimes tell patients that they may be having a stroke or a heart attack and require urgent medical attention. They will regularly be recommending treatments with their inevitable side effects – side effects from the drugs and also the problem of arranging life to remember to take them properly. In your Long Term Conditions clinics you will have to deal with abnormal test results and abnormal examination findings.

To you a diagnosis such as hypertension or diabetes may not be considered particularly important – after all you are seeing cases all day and every day. But it is your patent’s perspective that matters: one man’s triviality is another’s devastation. For a man whose father had progressively more radical amputations and lost his sight because of his diabetes, such news would be more distressing than it would be for the patient who has no personal experience of the disease. It is in the nature of the job of a healthcare worker that they see people who are ill or vulnerable, that they need medication or hospital or surgery, in short that their reality is falling short of previous expectations. So breaking bad news is a daily experience.

WHY IS BREAKING BAD NEWS SO HARD TO DO?

Coping with terminal illness creates emotional problems for the professionals involved,⁶ as well as for the patient and their family. The professionals may not have worked through their own feelings about death, and may have unresolved grief of their own. They too are affected by the general social taboos that surround death.

In addition the professionals bear a burden because of the responsibilities of their role:

• In general, people enter the caring professions because they want to help. Delivering bad news and upsetting people does not come easily. Dealing with strong emotions is difficult.
• The emphasis in healthcare training is on curing. A terminal diagnosis may be regarded as a failure, a sign of professional inadequacy.
• Coping with the emotional demands of the dying requires high quality communication skills. There may be a fear of being blamed, of not knowing the answers, or of saying and doing something that will make things worse.
• Helping someone come to terms with a serious diagnosis requires time and commitment. The goalposts have shifted and your patient will require progressively more care as time goes on. Contact with healthcare professionals gets more frequent. You may fear not being able to commit the time needed, or to maintain the availability required to do the job properly: what other aspects of your work or family may suffer as a consequence?

On the other hand, medical and nursing specialists in palliative care tend to have lower rates of anxiety and depression than their colleagues in other specialities.⁷ Training clearly has a protective effect.

SOME SUGGESTIONS

Work with doctors confirms that they nearly all worry about breaking bad news. If you get it wrong, the repercussions can be significant.⁸ So a lot has been written about breaking bad news, and a lot put into the medical curriculum to address the issues. What follows is based on the book Skills for Communicating with Patients, an extensively referenced and so therefore an authoritative review of the state of the art of consulting, and the origin of the Calgary-Cambridge consultation model.⁸

1. Preparation

Serious news is to be delivered, so there should not be too much delay in setting up the consultation. The setting needs to be appropriate – enough chairs, a quiet place – and enough time allowed. Making plenty of time available urgently is not going to be easy, and may involve some juggling with your work timetable. Make sure that you have all the facts at hand as you might be asked not only the facts of your patient’s case, but also matters such as treatment options, prognosis, what support services are available.

There is a good chance that your patient will not be alone, and will want a friend or relative to sit in on the interview. So you will have more than one set of ‘Ideas, Concerns and Expectations’ to deal with. It cannot be assumed that just because your patient has brought a friend that he is happy for all medical details to be disclosed: it is better to check at the outset what you have permission to discuss with the companion present.

2. What is already known?

What is your patient’s starting point? It is not necessary to repeat already known information. But your patient will be frightened, and you also have to contend with the starting point of the friend. Do not be afraid to start at the beginning: if nothing else this will help to show your patient the way you are thinking and it is better to make sure you are all on the same wavelength than risk misunderstanding in the future.

3. What information is wanted?

Most patients want to know if they have cancer, but your patient may not be one of them. One way of finding out is to use the question:

‘If this condition turns out to be something serious, are you the type of person who wants to know exactly what is going on?’⁹

What you say can be adjusted according to the answer that you get. And, of course, you also have to take account of other parties to the interview and what they want to know.

4. Chunk and Check

Your patient will not be at his best, but information has to be given. Give a warning shot: ‘I’m afraid that the news is not very good’ – then shut up and gauge the reaction before going on. Deliver the information in small digestible lumps, each followed by a pause. This pattern, a small piece of information followed by a pause, is termed ‘chunk and check’. It also creates short breaks of silence to give the opportunity for questions to be asked.

5. Patient perspective

It is best to assume that your patient does not think about his health in the same way that you do. Why should he? – he is not you and has not had your training and experience. However, if you deliver an explanation that does not fit with his health beliefs, then he will either be bemused or regard you as incompetent. To many people, a diagnosis of cancer means rapid and painful death, a perspective not supported by evidence (half of cancer sufferers are alive 10 years after diagnosis)¹⁰ but this is a common reaction to the word ‘cancer’. In order to work with your patient’s health beliefs you first have to find out what they are.

6. Look for cues

Our patients are not always too good at explaining their feelings in words at the best of times, and this is even less likely if some has just told you that you are going to die. So be alert for non-verbal cues. It is useful to do this during the ‘check’ part of ‘chunk and check’. The technique is the same as the ones you would employ for any patient consultation, but in this case you can usually assume that the reaction will have a negative emotional content.

7. Encourage the ventilation of feelings

It is a bit un-British to show emotion, but this is one occasion when it should be expected. Indeed being allowed to weep is highly prized afterwards by our patients. Prepare yourself for this and allow space for its expression. As for your behaviour, try not to be unrealistically reassuring and accept that it is the illness that is causing the emotional outburst, not you.

It may be that the emotion displayed is overwhelming and the rest of the business of the interview has to be postponed until another time. If this happens, then the process described above has to start again: time has to be found, etc.

8. Offer support

It is important to reassure your patient that you will continue to work in their best interests. This may be by emphasising that you intend to work with them on the problem, or perhaps that you will be an advocate on their behalf (‘I will talk to your GP about this’). A further gesture of your ongoing commitment could be the offer of an early follow-up appointment.

9. Be aware of your own non-verbal cues

You too will be giving out signals to your patient. Empathy is appropriate, but do be more cautious if your own emotional reaction to the situation is negative. The cheerfulness which is the hallmark of the disposition of most practice nurses in most settings should be tempered in recognition of the significance of the situation.

10. Plan follow-up

Be very clear with your patient what you expect will happen next, both with respect to the practice that you work in, and also with respect to any hospital appointments and treatments. Even if what you have just told them means that secondary care will take over medical management, this does not mean that you should not plan to see your patient until the hospital has done its bit. The idea of ‘touching base’ (confirming your continuing interest in their welfare) is never a bad idea.

CONCLUSION

Breaking bad news is a process, not a single event. Circumstances change, and patients often develop concerns that are not apparent at a first interview. At times like this people get upset, and it is best to accept this rather than to try and wish it away. Often these patents are old friends, and so you will probably be upset as well. Primary care can still offer accessibility and support even if, objectively, the medical situation is hopeless.

Breaking bad news is often the first step in an increasingly intense and frequent relationship between nurse and patient. It is physically and emotionally draining, but giving your patients a good death is the final and possibly the best professional service you can offer them.

REFERENCES

1. Nursing & Midwifery Council. The Code, 2015

http://www.nmc.org.uk/standards/code/read-the-code-online/

2. General Medical Council. Duties of a Doctor http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp [Accessed 13.4.15]

3. Buckman R. Talking to patients about cancer. BMJ1996;313:699-700.

4. Patient choice in managing cancer. [No authors listed] Drug and Therapeutics Bulletin 1993;31:77-9.

5. Higgs R. When it’s time to stop. Update 1998;56:656-8.

6. Redinbaugh E M, Sullivan A M, Block S D et al. Doctors’ emotional reactions to recent death of a patient: cross sectional study of hospital doctors. BMJ 2003;327:185-9.

7. Ramirez A, Addington-Hall J and Richards M. ABC of palliative care. The carers. BMJ 1998;316:208-11.

8. Silverman J, Kurtz S & Draper J. Skills for Communicating with Patients. 2nd Edition. Radcliffe; Oxford, 2005

9 Buckman R. How to break bad news: a guide for medical professionals. Papermac: London,1994

10. Cancer Research UK. Cancer survival statistics. http://www.cancerresearchuk.org/cancer-info/cancerstats/survival/england-and-wales-cancer-survival-statistic