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Abstract
Aim To understand patients' perspectives on how a diagnosis of a life-limiting illness was first communicated to them.
Study design In-depth qualitative interviews with 50 people ranging in age from 30 to 93 years, diagnosed with cancer (31), heart failure (13), stroke (three) or neurological conditions (three) and thought by the responsible health professional to be in the last year of life. Participants from two areas of Northern England were recruited through specialist nurses or hospital consultants and interviewed in their current place of residence. Transcribed data were analysed using Framework.
Results Patients were most likely to recall the pace and clarity with which bad news was conveyed. A direct approach was most common, without much prior warning for the patients. Direct information was usually received well when the patient knew the health professional and when it had been suggested that the patient should be accompanied to the appointment. Some professionals did work to set the scene for the eventual news, with a gradual build-up of information, and narrowing down of options. This approach was perceived as appropriate and sensitive. People with heart failure had engaged in much less discussion about their condition, and most did not recall a specific conversation with their doctor about their prognosis.
Conclusions Bad news is not always broken in a sensitive way, despite considerable efforts to address this issue. Relatively minor changes to practice could improve the patient experience: greater preparation, provision of sufficient time in consultations and cautious disclosure for new patients.
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Introduction
Being a good communicator is acknowledged as an essential skill for all doctors and training in how to talk to patients is a core part of medical curricula.1 Poor communication may have adverse consequences for both the patient and the clinician. For cancer patients, it has been associated with worse clinical and psychosocial outcomes, including poorer pain control, dissatisfaction at not being involved in decision making and confusion over prognosis.2 3 Adherence to treatment, recall of information and quality of life are all improved when communication is perceived to be good.4 5 Health professionals may experience greater psychological morbidity, reduced job satisfaction and higher stress levels if communication is difficult or unsatisfactory.6 7 Miscommunication also lies behind a high proportion of medical errors and complaints.8
Bad news has been defined as information that adversely changes expectations for the future, or results in a persistent cognitive, behavioural or emotional deficit in the recipient.9 10 Telling a patient that they have developed a life-limiting illness such as cancer is an example of breaking bad news, a situation that most doctors will face at some point in their career. It is also one of the most challenging communication tasks in medicine and there is no shortage of advice available to doctors on how to ‘break bad news’, including how to prepare for and structure the interview.11 12 Training has been shown to improve communication in ways that can be used in clinical cancer care, for example, with long lasting effects.13,–,16
Recent years have seen growing interest in ensuring that communication in cancer care, in particular, is improved. In the UK, training in communication is required for senior health professionals involved in cancer care, and the presence of local guidelines on how best to break bad news is a measure used in cancer peer review. All of these initiatives might be expected to produce more effective and satisfying encounters for doctors and patients. However, a focus on research into professional skills has meant that relatively few studies have measured the outcomes that patients experience.17 In this paper, we report on patients' perceptions of the process of breaking bad news about a diagnosis of a life-limiting illness, and how this was interpreted by the patients and carers involved. The data were gathered during in-depth interviews into the wider consequences of living with serious or terminal illness (north east England) and transitions between places of care at the end of life (north west England). Experiences were recounted as an important part of the story of the participants' healthcare experience. Our aim is to understand patients' perspectives on how a diagnosis of a life-limiting illness was first communicated to them, in order to gain insights into how this can be improved.
Methods
Fifty patients with life-limiting or terminal illness were interviewed, 20 in North Yorkshire and 30 in the north west of England. Health professionals (specialist nurses, specialist palliative care team members or hospital consultants) identified participants from among their patients whom they judged were in their last year of life in North Yorkshire. In the north west, the ‘surprise question’ was employed (‘Would you be surprised if your patient were to die in the next 12 months?’). Written information about the study was provided, and patients had to ‘opt-in’ if they wished to take part, by sending their contact details to the researchers. Informed consent was obtained at the time of the interview. The interviews were semi-structured around the wider consequences of diagnosis (20 participants) and transitions between places of care (30 participants). Interviews were recorded with permission and transcribed in full. Although the interviews in the two areas were separated in time, they were all analysed in a similar way using the principles of Framework.18 The transcripts were coded line by line and the codes used to produce an index of initial categories, which were grouped into themes. The coding index was applied to all transcripts, using an Excel spreadsheet to manage the data. Each theme was allocated to a chart, with a row for every case and a column for every category. As the analysis progressed, the initial themes and categories were refined to ensure that they represented the breadth and depth of the data. Patterns and associations across themes and cases were sought through repeated examination of the summarised data and reference back to original transcripts and field notes. Two researchers independently coded the same five transcripts and applied the coding index to the same data. Minor differences were resolved by discussion. The emerging analysis was discussed with the study team, who had read a sample of original transcripts.
Findings
The majority of the interviewees (44 out of 50) were aged 60 years or older, although they ranged in age from 30 to 93 years. Those resident in North Yorkshire were younger (median age 60.5 years, range 30–80 years) and included 17 patients with a cancer diagnosis, three with a neurological condition and one with an atypical autoimmune disorder. In the north west, the participants were diagnosed with lung cancer (14), heart failure (13) or stroke (three) and ranged in age from 69 to 93 years (median 77 years).
Patients' accounts of the process of receiving news of their diagnosis of a life-limiting illness reflected the importance of the pace and clarity with which this bad news and associated information were conveyed. Three approaches emerged: direct and open information and discussion; a gradual build-up of information and narrowing of possible outcomes; and for some heart failure patients, receiving very little information.
Direct approach
A direct approach was adopted by most professionals, who delivered the information without much prior warning for the patients. Patients were most likely to consider that the bad news had been communicated sensitively using a direct approach when three key features of preparation were in place. These were: already knowing the doctor giving the information; when it had been suggested that someone accompany them to the appointment; and when there was sufficient time to discuss the information and to ensure that it was fully understood. When these qualifications were met, talking directly was more likely to be perceived as an admirable quality, representing honesty and trustworthiness (Box 1).
Box 1 Direct commun ication with no warning
Familiar health professional, patient with companion
“Well, my grandson was with me when the doctor told me at the hospital, bit of a shock at first but did not unduly worry me, and it still does not. Yes, yes. I just think what will be will be”.
Interviewer: When you were told, were you told in a sensitive way?
“Oh yes, yes. Very. Very caring”. (Female age 78 years, lung cancer)
Familiar health professional, patient alone
“The one time that we felt totally at sea and somewhat let down was when the news was first given me by my GP, and he just came straight out with the results of the test and just told me and sent me away. Well obviously we were devastated and it was a long time before we actually saw the consultant and had no time, well, I was on my own with the GP. We did think that was a bit brutal and we did not have any questions”. (Male age 60 years, haematological malignancy)
Unfamiliar health professional, patient alone
“I was not expecting it, it was the last thing that I thought of… I was under the assumption that the stomach ulcer would be OK, I was walking into the hospital down the main entrance thinking this is the last time I will be coming here and I was quite pleased about things… And it was a strange situation. I went through, they weighed me, I think they took my blood pressure and asked me to wait outside this door and then this doctor asked me to go in, and she told me the results of the tests showed I had a tumour in my bowel. I think if people had said, do you want to bring your wife with you, it would have given you more of an indication that something was wrong. So yes, it was quite a shock”. (Male age 61 years, bowel cancer)
For example, a 78-year-old female participant receiving a diagnosis of lung cancer described a meeting that was planned by the doctor whom she had encountered at previous hospital appointments. Although she spoke of the initial shock at the diagnosis, mention of her grandson's presence suggests this was a comfort to her. In circumstances such as this, where the doctor is known and a friend or relative is present for support, such straight talking (“… just part of their job. Just come out with it” (male, 81 years, lung cancer)) is well received. Most of the interviewed cancer patients reported receiving bad news about their condition in this direct but sensitive and well-planned manner.
Receiving the news of cancer alone was perceived as a negative experience by patients, however sensitive the health professional involved may have been. In some cases, no suggestion was made that someone should accompany the patient to the appointment, although that would have provided a warning that a serious discussion was planned. The news was particularly shocking when it came from a doctor whom a patient had not met previously and would not meet again. But even when patients knew the doctor conveying the bad news, the lack of preparation resulting in no one else being present was keenly felt by participants.
The opportunity to adjust to the possibility that bad news might be given or to consider what questions to ask was missed by patients. Such “very, very abrupt” (female, age 65, bowel cancer) communication of bad news may leave patients with incomplete or poorly understood information about their condition and treatment, with a wait before any opportunity to seek clarification. As patients often regard news of their diagnosis as an important marker in their illness experience, poor or insensitive communication at this stage may have a continuing negative impact on patients' perception of their condition, and their relationship with their doctor and the wider health service.
Gradual build-up
While the majority of health professionals used the direct approach, a minority prepared the scene for the eventual news, with a gradual build-up of information and narrowing down of options. Sharing information in stages about the likely serious cause of these symptoms seems to make the news easier for the patient to receive. A longstanding professional relationship also appears to be helpful (Box 2).
Box 2 Gradual build-up of information
“… I went and told the doctor my symptoms, he said ‘This is quite serious… I want you to go in hospital’, I said ‘When?’, he said ‘Now’… I said ‘I cannot, I have just left the house open… ‘Well it is very serious… go… for an x-ray tomorrow if you promise me… and I think after this x-ray you are going to have a very busy time’. So I went the next day”.
Interviewer: At that time did you have any idea what he might have meant?
“I just knew it was serious for him to say that… anyway I went for the x-ray to hospital, and the doctor… he must have phoned up the hospital and got the x-ray sent through, and he said ‘I am sorry to have to tell you… but there is a lot of muck on one lung… and there is something that looks like it’s some sort of a tumour…' So I went in the next day, and he told me… ‘I think it’s a cancer you know, but we are not sure. So you will be starting on a fortnight of scans”.
Interviewer: At that point had you told anyone, when he rang up to let you know did you then tell your sister or anyone?
“No not until I had seen him… in person and then I phoned my sister and my eldest lad like. And… it turned out… it was a cancer”. (Female, 78 years, lung cancer)
Lack of clarity
Most patients received information about their condition early in their treatment or after asking for clarification at a later stage. People with heart failure had discussed their diagnosis to a much less extent than those with other conditions. A majority of the heart failure patients had not received a full explanation of their condition at the time of diagnosis or accessed the information needed to understand their heart condition and its consequences for their daily lives and prognosis. Some reported a continued lack of clarity with unscheduled admissions to hospital prompting a realisation that the condition was serious (Box 3).
Box 3 Understanding of their diagnosis amongst patients with heart failure
Realisation of prognosis on admission to hospital
Interviewer: So you went into hospital, and what did they tell you was wrong?
“Well I just had to rest… they put me in a place attached to the main ward, but that was it, you know… the other patients said what are you here for, I said well, I have got heart trouble, that is why I am here, and they just accepted that, but I was in a long time, weeks and weeks”.
Interviewer: And did anyone explain why?
“It is just that your heart could give out, you know”.
Interviewer: How did that make you feel when you found that out?
“I was bloody terrified you know. I had thought ‘Well what is the point of living this life?’… you know if I am sick. I am ill, I have been bloody awful”. (Female, 84 years, heart failure)
Explanations from specialist nurses some time after diagnosis
Interviewer: When you were diagnosed with the heart failure were you given any information about your condition? Did someone explain to you what it was?
Patient: “Not really, not outright. Because it was (the nurse who) explained the other day, did not she?”.
Wife: “Yes I asked her, if you remember. It was just because we didn't know what his condition was in the hospital, nobody told us. And this has come as a great shock to the both of us”.
Interviewer: What has come as a shock, the heart problem?
Patient: “The heart problem”.
Wife: “Yes, yes. You see, the only way I can explain it, or the way it was roughly explained to me, and (patient). You see there are four parts of the heart, and one of these parts is deteriorating. See it's not a sponge anymore, she said, and that is one of the problems, and in time, it is doing it now, it's affecting his kidneys as well. And of course we were upset were not we? Terribly upset”. (Male, 75 years, heart failure and wife)
Interviewer: Has anyone explained what happens next then with your illness?
Patient: “No, just that (specialist nurse) told me that. And they change the tablets around that is all I know. I did not know all what is going on in my chest was to do with my heart, you know, and she was telling me that. I could not believe it, how could that be? Anyway, that is all I know about it”.
Wife: “He is like me, he does not ask questions you see”.
Patient: “Oh no I don't like asking. Take these tablets, yes, I will take them”.
Interviewer: Why do not you like asking?
Patient: “I do not like bothering people in the hospital you know”. (Male, 81 years, heart failure and wife)
For many of the people with heart failure, nurses with specialist knowledge and time had provided an explanation and discussion of the condition and its consequences. Although this cannot remove memories of any uncertainty at the time of diagnosis, specialist nurses appeared to be able to go some way to ‘rescue’ the patients from continuing confusion and fear about their condition by developing a positive and supportive professional relationship. Finally, receiving clear information about a poor prognosis may be an intense emotional experience. It is difficult to judge how information on prognosis would be received at an earlier stage. It is possible that delay exacerbates the surprise, if a previous lack of information suggests to the patient that there is no important or serious news to be conveyed.
Heart failure patients were typically offered little information about their condition, and their accounts were characterised by the anxiety and fear that this can provoke. A number of the patients were worried about “bothering” staff by seeking clarification, which raises the possibility that the health professionals caring for them had not checked the patients' understanding or provided sufficient opportunities for discussion of their concerns.
Discussion
Participants who had received bad news retained clear perceptions of how it was conveyed to them by health professionals. The pace and clarity of communication were particularly important. When a relationship between the patient and health professional was already established, direct information giving was acceptable, although preparing the way with advice to attend with a relative or gradual revealing of information were appreciated as being sensitive. Most of the people with heart failure did not recall a specific conversation with their doctor about their prognosis.
Our study is one of the largest qualitative studies reporting on patients' perspectives of breaking bad news. Although the average age of participants was slightly older than in many other studies, a number of common themes emerged. Kirk interviewed 37 patients in Canada and Australia and identified six attributes of “good communication”.19 Three of these (giving time, clarity and pace) were also discussed by our participants. Another Australian study with 19 patients highlighted the importance of the relationship with the health professional and the need to negotiate who is present at the consultation where significant information is to be discussed.20 When findings from these and other studies were pooled in a systematic review of the end-of-life communication preferences of adults with advanced disease, communication style was emphasised as often as content. This was also one of our findings. Honesty was identified as being particularly important to patients and caregivers in seven studies,21 and highlighted in a review of prognostic information preferences.22
People with heart failure reported a significant lack of information or opportunities to discuss their condition and its implications with health professionals. Expectation of a good response to therapy and prognostic uncertainty may deter clinicians from discussing the future with their heart failure patients.23 However, all the recent management guidelines recommend discussion and introduction of a palliative care approach early in the disease trajectory,24 25 and a range of studies suggest that heart failure stage and functional class can provide an accurate assessment of prognosis. Whatever the evidence, it seems likely that the meaning attributed by patients (and possibly professionals) to a diagnosis of heart failure is different from that afforded to cancer. A recent review points out that much could be learned from oncology, where similar challenges have to be overcome.26 Ensuring that communication training extends beyond cancer care may enable more professionals to initiate the discussion about dying with patients who have other diagnoses.
Data in this study were collected in two different areas from a heterogeneous group of participants, but the themes that emerged were common across and between the two sets of interviewees. Having a diagnosis confirmed has serious and wide-ranging implications for patients and their families, and perceptions of how the news was broken may be difficult to isolate from the response to the news itself. Research has shown that patients are able to identify effective and ineffective communicators in this situation despite the emotions involved.16 We also know that health professionals tend to overestimate patients' understanding of their prognosis and underestimate their need for information.27 In the small number of cases where the initial diagnosis was made some years before the interview, it is possible that memories were influenced by subsequent events.
Some of our participants described excellent communication from their doctors, a finding supported by a large postal survey of cancer patients in England, in which 83% (54 744) of respondents reported sensitive communication of their diagnosis.28 For the remaining 11 000 people in that survey and many of our interviewees, it is clear that bad news is not always broken in a sensitive way, despite efforts to highlight this issue over many years. Our findings suggest that there are some important but not necessarily simple changes to the way in which doctors communicate bad news that could benefit patients, and all are already known to be good practice. Although it is unreasonable to expect doctors to anticipate the reaction of every patient, more time to build up to the giving of bad news is required for new patients. Secondly, forward planning is needed to meet the practical and emotional aspects of breaking bad news, for example suggesting a relative accompany a patient receiving results, or having a nurse or counsellor available. This may be more difficult to stage-manage in general practice, where patients exercise more autonomy over attendance at appointments and specialist nurses are not readily available. But it is also a challenge for hospital services, particularly those caring for people with non-malignant conditions. Finally, there is considerable scope for providing patients with heart failure with greater understanding and clarity about their conditions and its likely consequences for their daily lives.29 30
Acknowledgments
The authors are grateful to the older adults who donated their time to this research and all the health professionals who identified interviewees.
References
Footnotes
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Funding This paper is based on data collection from two projects. BH was funded by a Medical Research Council Special Training Fellowship (2002–2006) and an NIHR Career Development Fellowship (NIHR CDF-2009-02-37). Data collection in the north west of England forms part of a project funded by the National Institute for Health Research Service Delivery and Organisation (NIHR SDO) programme (project number 08/1809/2320). The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the NIHR SDO programme or the Department of Health
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Competing interests None.
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Ethics approval Sefton Research Ethics Committee (09/H1001/51) and the Yorkshire and Humber Research Ethics Committee (06/Q1104/32) approved this study. Informed written consent was obtained from all participants, including any caregivers who are quoted.
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Provenance and peer review Not commissioned; externally peer reviewed.