1 Medical Psychology Research Unit, School of Psychology and Department of Medicine, University of Sydney, NSW, Australia; 2 Department of Cancer Medicine, University of Sydney, Australia; 3 School of Psychology, University of Sydney, Australia; 4 Royal Prince Alfred Hospital; 5 Department of Medical Oncology, Hamilton Health Sciences, Juravinski Cancer Center, Ontario, Canada
* Correspondence to: Prof. P. Butow, Medical Psychology Research Unit, School of Psychology, Griffith Taylor Building (A19), University of Sydney, NSW 2006, Australia. Tel: +61-2-9351-2859; Fax: +61-2-9036-5292; Email: phyllisb{at}psych.usyd.edu.au
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Abstract |
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Key words: communication, prognosis, review
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Introduction |
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The difficulties doctors face when discussing prognosis with their patients include deciding whether to provide estimates and survival statistics, discussing life expectancy with patients with poor prognoses, conveying prognostic information with sensitivity and honesty [1], deciding whether or not to encourage hope [1
, 13
, 14
], and meeting the needs of patients from various cultural backgrounds whose prognostic information needs may differ [15
18
]. Clinically, the challenge has been to balance these concerns with the complexities of making prognostic estimates [19
21
] while complying with legal requirements to provide patients with all necessary information [22
]. Despite these issues, there is a lack of guidance for clinicians on the best way of approaching prognostic discussions.
We conducted a systematic literature review of published studies to date that explore communicating prognosis with cancer patients, with the aim of clarifying the current knowledge of patient preferences, clinician views and current practice.
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Search strategy and selection criteria |
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Eleven primary research questions guided organisation of the review findings. Studies are summarised under the subcategories according to the participants' disease stage (early stage, advanced and palliative), and in descending order: firstly, of level of evidence and secondly, according to year of publication (see Tables 16). Studies undertaken with advanced cancer patients or with physicians working with advanced cancer patients were classified under the advanced cancer setting unless it was clearly stated in the article that the setting in which the research was conducted was palliative care. Level of evidence was rated according to the Australian National Health and Medical Research Council evidence rating system as follows: Level I: evidence obtained from systematic review of all relevant randomised controlled trials and meta-analyses; Level II: evidence obtained from at least one properly designed randomised controlled trial; Level III: evidence obtained from well designed controlled trials without randomisation; or from well designed cohort or case controlled analytic studies, preferably from more than one centre of research, or from multiple time series, with or without the intervention; Level IVa: evidence obtained from descriptive studies of provider practices, patients' behaviours, knowledge, or attitudes or a systematic review of the descriptive studies; and Level IVb: literature which represents the opinions of respected authorities based on clinical experience or reports of committees [23].
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Results |
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Patient preferences for prognostic information
Twenty-three studies exploring this issue were identified in the literature (see Table 1). The majority of the studies provided Level IVa evidence and were conducted with patients with early stage cancer in mainly Australia or the USA. These studies show that most patients want to be given prognostic information and that they rate this information as both important to them and necessary [2434
]. However, one qualitative study found that patients did not want to be told a bad prognosis [35
], and another study, involving hospitalised patients with acute myeloid leukemia, found that many did not want their doctor to be specific about prognosis [36
].
Most patients want information about the chances of a cure and the extent of disease spread and possible side-effects of treatment [26, 33
, 34
, 37
39
]. Many patients want to discuss life expectancy and the effect of cancer on their life [24
, 29
]. However, many patients would like the specialist to check with them first if they want prognostic information and what type of information they would prefer, such as the probabilities of cure, survival rates, general expected outcome of the disease [33
, 34
]. For example, Kaplowitz et al. [34
] asked 352 patients whether they would like to be given a qualitative prognosis (i.e. patient will/will not die from the disease/probably live a long time) or a quantitative prognosis (i.e. an estimate of their expected survival). They found that 80% wanted a qualitative prognosis but only half wanted a quantitative estimate. Another qualitative study found that patients preferred written prognostic information to be presented using positively framed language in terms of survival probabilities as opposed to chances of mortality [32
]. Many patients also wished to have a loved one present during the discussion [25
, 26
].
In patients with advanced cancer, fewer studies have been conducted and the evidence is less clear. In a 1976 study [40], patients preferred not to receive more prognostic information than they had already received, although the amount of prognostic information given to the study patient was not reported. More recent studies, however, show that patients prefer disclosure of bad news and prognosis, that the oncologist check first if they want this information [1
], and if information is to be given that it be given in a direct and honest manner [1
, 41
].
There is limited evidence available for patients with palliative stage disease. From the three studies identified, which were conducted in the USA, it was found that most patients wanted to discuss their prognosis truthfully with their doctor, including the impact of the illness on their daily lives [42, 43
]. The most recent study conducted in 2003 found that the majority of palliative care patients (55%) and their caregivers (75%) who were interviewed retrospectively, stated that they would like to have discussed life expectancy with their clinician [44
].
Patient preferences for style of communicating prognosis
Fourteen studies on the style of communicating prognosis information were identified in the literature (see Table 2). This topic encompasses a range of issues including the location in which prognosis could be discussed and with whom, usage of terminology and how to convey hope.
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The literature on patients with advanced cancer is characterised by the themes of providing hope and sensitivity when communicating prognostic information [1, 41
], the importance of trust and the development of a relationship with the patient [1
, 50
], as well as showing understanding of psycho-social concerns [41
]. The need for honesty and realism was also emphasised [1
, 41
].
The evidence in the palliative care literature also emphasised the need for honesty and sensitivity [43, 51
]. It is suggested that being honest about a patient's medical condition and prognosis can alleviate uncertainty [51
]. It is also recommended that physicians approach communication about end-of-life care as a spectrum requiring attention from the time of terminal diagnosis to death [51
].
Disclosure of prognosis to family members
Four studies on the issue of disclosure of prognosis to family members were identified in the literature. It is not always easy for oncologists to meet the needs of family members whilst also respecting those of the patient [1]. An early study by Holland et al. [52
] found that the majority of the physicians surveyed believed that it was common practice to reveal the diagnosis and prognosis to family members of patients. More recent Western studies have revealed a general belief in prioritising the preferences of the patient over those of family members, both in terms of what the patient is told and disclosure to family members [1
, 35
]. However, one study found that although the majority of physicians surveyed stated they would not withhold diagnostic or prognostic information from their patients on request of the family, they were more willing to withhold prognostic information than diagnostic information [53
].
The evidence for patient preferences is mixed. One study found that patients favoured openness with family members but rejected unconditional disclosure of information without their consent and their family influencing what information they would be given [35].
Predictors of prognostic information preferences
Several studies (all Level IVa evidence) have identified predictors of prognostic information preferences; all were conducted with patients with early stage cancer. Anxiety and expected survival appeared to be the strongest predictors. Patients from a rural upbringing, with lower anxiety tend to want full disclosure of terminal prognosis [25], those with higher anxiety prefer the prognosis be given to a loved one [25
], and older more anxious patients and those with a worse prognosis were less likely to want, request and receive prognosis information [34
]. Gender has also been associated with information preferences with women in one study being more likely to want more prognostic information [30
], and women in another study with lower education levels were more likely to want to know the chances of cure [54
].
Physicians' views on communication of prognosis
Eleven studies that examined physicians' views on communication of prognosis were identified in the literature (see Table 3). With respect to patients with early stage disease, many oncologists report being in favour of giving the diagnosis and prognosis when the patient desires this information [55]. Some physicians approve of informing the patient of their diagnosis and prognosis even when the patient prefers not to be told [55
]. Some clinicians in a 1987 study were of the opinion that disclosing the prognosis was only appropriate if the prognosis was hopeful [52
]. Oncologists reportedly have the most difficulty in discussing prognosis with patients in the transition from curative to non-curative treatment [53
, 56
].
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Four studies have been conducted with patients in the palliative stage. An early survey conducted in 1985 in USA of physicians and medical students found that most participants believed that terminally ill patients should be told the truth about their diagnosis and prognosis [58]. However, more recent studies have shown that physicians are reluctant to provide prognostic information [59
, 60
]. For example, a large study of 214 physicians found that physicians were reluctant to provide a frank estimate of survival in most cases, even if the patient requested the information, and would often provide a conscious overestimate most of the time [60
]. One cross-cultural study found that there are differences in physician attitudes towards communication with terminally ill patients according to country/region [61
]. For example, although all physicians surveyed stated that patients should be informed of the terminal status of their disease, 93% of Canadian physicians, 26% of European and only 18% of South American physicians stated that at least 60% of their patients wanted to know this. Canadian physicians were also more likely to support patient autonomy in decision-making [61
].
Current practice of delivering prognostic information
Thirty-one studies on the current practice of delivering prognostic information were identified in the literature (see Table 4). All of the studies that explored the practice of communicating prognosis consisted of Level IVa evidence and many were conducted in the USA [53, 62
, 63
] or Australia [27
, 64
].
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In patients with advanced cancer, the research indicates variability in observed practice of communicating prognosis. Most studies report that prognosis is infrequently discussed [6770
] and one study found that if a prognostic discussion had occurred, it most commonly took place between the doctor and someone other than the patient [70
]. Where prognostic discussions had occurred, it was found that there was a considerable lack of clarity in the information [67
], estimates of expected survival were often not given [70
] and both doctors and patients tended to avoid acknowledging or discussing prognosis by focusing on the treatment plan. Although the most recent study [71
] reported that patients were well informed of the aim of their treatment and the incurable status of their disease, fewer were informed of their expected survival. One USA study found that many of the primary physicians, specialists and oncologists who were interviewed, experienced prognostic discussions as difficult and were unwilling to give patients specific estimates of survival but would give survival statistics even when the patient had not requested this information [13
].
There are mixed findings regarding the manner of delivery of prognostic information as rated by patients. One Australian study found that many patients described having received their diagnosis and prognosis in an unclear and uncaring manner [69]. Barnett [72
] found that the bad news was most often delivered by a surgeon and this delivery was rated poorly or as insensitive by the patients. Sapir et al. [41
] also found that the prognosis was delivered by the surgeon in almost half of the cases, but that most patients described being given this information clearly and with sensitivity whether given by the surgeon or the oncologist. Another study found that patients were content with their physician's communication and rated them as honest [73
].
In early studies conducted with patients in the palliative stage, it was reported that many physicians mostly did not discuss the diagnosis or prognosis with their terminally ill patients [74, 75
] and if the issue of prognosis was raised, it was usually initiated by the patient and was not directly addressed by the physician [74
].
More recent studies have also found that physicians frequently do not discuss prognosis with the patient or their carer [76, 77
], they present fewer facts and less detail concerning prognostic information compared with other types of information [59
], and are reluctant to provide a frank estimate of survival even if the patient requests this information [60
]. A lack of communication to terminally ill patients of impending death has also been reported [78
]. One study, however, found that the physicians who did provide a prognosis reportedly did so in a direct manner [77
]. Furthermore, the most recent study published in 2003, which was conducted in the USA, found that nearly all of the 214 palliative care patients interviewed and 168/193 of their caregivers reported that they had not had a discussion about life expectancy with their physician, although the majority stated they would have wanted such a discussion [44
]. It has also been reported that many carers as well as physicians do not disclose the prognosis to the patient [77
], and one qualitative study reported that the ability of the carer to cope with the knowledge of the patient's prognosis could influence the patient's awareness of his/her prognosis [79
].
Patient understanding and awareness of prognostic information
Nineteen studies that explored the issue of patient understanding and awareness of prognostic information were identified in the literature (see Table 5). Most studies conducted with patients with early stage cancer consisted of Level IVa evidence and have been conducted in a range of countries. The common issue evident amongst these is that many patients reported either not being told their prognosis or were found to misunderstand the status of their disease, the aim of their treatment and their prognosis [80]. They often overestimated their chances of cure and expected survival [63
, 81
, 82
]. Australian research has also found that many patients do not understand terminology such as relative risk reduction (53%) and median survival (73%) [32
, 33
] and has recommended that oncologists use a variety of techniques to communicate risk and to check that information has been understood [33
].
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There is little evidence in patients with palliative stage disease. A 1987 study found that many incurable patients (73%) were not aware of their disease status and many (40%) had not actually been given this information [88]. This study compared results with a 1969 study and found that there had been an increase in awareness and disclosure between 1969 and 1987. A more recent study found that most patients (74%) acknowledged their terminal diagnosis and had a realistic understanding of their expected survival. However, there was a substantial minority (19/200) who denied their terminal status and shortened life expectancy [89
]. Petrasch et al. [73
] found that almost one half of their sample of 139 patients did not understand that the aim of their treatment was palliation.
Predictors of patient understanding of prognostic information
Several studies have identified predictors of patient understanding of prognostic information. For example, one study found that patients with better recall had a better prognosis, exhibited less denial and rated their oncologists as clearer communicators [89]. Another study found that lower prognostic awareness was more common among those who were depressed and who had intense family contact [82
]. Patients with lower education levels have also been found to be more likely to misunderstand their illness [17
, 90
, 91
].
Cultural differences in preferences and understanding
Clearly there are cultural differences in preferences; a complete coverage of this issue is beyond the scope of this review. Several studies exploring the Greek culture have been conducted in recent years [16, 17
, 92
] and other cultures examined include that of Israel [41
], Sweden [54
, 93
], Norway [46
], Germany [73
], South Africa [94
], Italy [84
, 95
], Singapore [18
], Japan [96
], Turkey [97
], Spain [98
], Tanzania [99
], Chinese migrants of Australia [15
], and one cross-cultural study of Canadian, South American and European physicians [61
].
The evidence suggests that patients of Anglo-Saxon background prefer disclosure [26, 28
, 34
, 37
], whereas those of other cultural backgrounds tend to vary [17
, 91
, 94
96
] with a tendency to favour non-disclosure [15
, 17
]. Many health professionals of different cultures, particularly Asian cultures, are in favour of non-disclosure [18
, 90
, 100
]. Patients from these cultures are also reportedly unaware of their diagnosis and/or prognosis [46
, 73
, 91
], which may indicate that it is common for patients not to be given this information. Members of some cultures prefer that the family have a high level of involvement in the consultations and in some cases, there is a preference that the family be informed first of the diagnosis and prognosis, and that the patient be either told gradually or not at all [17
, 90
, 99
]. A separate review of these issues would be a useful addition to the literature.
Impact of prognostic information on patient outcomes
Eight studies reporting findings on the impact of prognostic information on patient outcomes were identified in the literature (see Table 6). These have found that the manner of disclosure or content of prognostic information has impacted on patient satisfaction, depression [89] and anxiety [71
], hope [101
, 102
], recall [72
] and likelihood of the use of alternative therapies [103
]. For example, being given the prognosis, having a longer length of disclosure [46
], and environmental factors (such as the discussion being free from interruptions) [7
] were found to increase patient satisfaction. Schofield et al. [102
] found higher satisfaction and lower depression among patients who reported that the doctor had discussed life expectancy and that satisfaction was associated with patient level of need to discuss life expectancy. Lower levels of anxiety were found among patients who reported having their need for discussing life expectancy met.
Interventions to facilitate prognostic discussion
No studies have been conducted to specifically evaluate an intervention to facilitate communication of prognosis. However, some general intervention studies (Level II evidence) have reported results relevant to communication of prognosis [31, 104
107
]. Research conducted in Australia has found that provision of a question prompt list (QPL), and endorsement of the QPL by the oncologist, significantly increased patient question-asking and subsequent discussion about prognosis whilst decreasing patient anxiety and reducing the length of the consultation [104
106
]. Another study involving a communication skills workshop intervention reported significantly improved physician self-ratings of confidence in key areas of communication, including giving good and poor prognoses, giving news about recurrence or the shift to non-curative treatment, which remained evident after 3 months [107
].
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Conclusions |
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There is a lack of evidence in patients with advanced cancer and palliative stage disease. The majority of studies with these patients have explored the current practice of communication of prognosis and indicate that prognosis is often not discussed. However, these studies provide only Level IV evidence and were often based on small sample sizes or a qualitative design.
Overall, it is apparent that there is a lack of evidence regarding the impact of prognosis communication on patient outcomes and interventions to facilitate prognostic discussions. Those studies providing the strongest evidence have been randomised trials of interventions to improve communication between oncologists and patients. Although some of these studies report results relevant to prognosis communication, none aimed to specifically evaluate prognosis communication. Furthermore, there is a lack of guidance for clinicians regarding communicating prognosis to patients. There are some guidelines [2, 108
111
] and recommendations on communicating bad news. However, there are none specifically addressing how to discuss prognosis, apart from those within the Australian Psychosocial Clinical Practice Guidelines [112
114
], which are based on one Australian Level IV study of the prognostic information preferences of women with early stage breast cancer [26
, 33
].
Recommendations for future research include the identification of preferences for prognostic information for patients with advanced cancer and those at the palliative stage, the impact of prognostic information on patient outcomes, interventions to facilitate prognostic discussion, and cross-cultural differences. Such research would usefully employ rigorous designs to provide a strong basis to inform guidelines on communicating prognosis for clinicians and other health professionals working in this area.
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Acknowledgements |
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Received for publication October 26, 2004. Revision received February 1, 2005. Accepted for publication February 3, 2005.
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