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© 2002 American Society for Clinical Oncology Communication in End-of-Life Cancer Care: A Comparison of Team Assessments in Three European CountriesByFrom the Department of Palliative Care and Policy, King’s College London, Weston Education Centre, London, United Kingdom; and Unit of Clinical Epidemiology and Trials, National Cancer Institute, Genova, Italy. Address reprint requests to Irene J. Higginson, BmedSci, BMBS, FFPHM, PhD, Department of Palliative Care and Policy, King’s College London, Cutcombe Rd, London SE5 9RJ, United Kingdom; email: irene.higginson{at}kcl.ac.uk
PURPOSE: To compare team assessments of end-of-life communication in three European countries, and to identify factors associated with problematic communication. PATIENTS AND METHODS: Three prospective cohort studies used similar standardized procedures, and included patients referred to palliative care services in the United Kingdom, Ireland, and Italy. Palliative team care staff assessed three components of communication in the last week of the patient’s life—between the patient and family (or those close to them), between professionals and patient and family, and between professionals—using a validated measure. Univariate and multivariate analyses explored the data and tested for relationships between possible explanatory variables and communication.
RESULTS: Data were collected on 1,326 patients, 416 in the United Kingdom, 411 in Ireland, and 499 in Italy. Mean age was 68 years (range, 19 to 95 years), 55% were male, and almost two thirds were married. Team members assessed that communication between patient and family was a moderate or severe problem in the last week of life for 30% to 40% of patients; 10% to 20% had moderate or severe problems recorded for the other two communication items. Problematic communication was associated with respiratory and breast cancers, a shorter time in care, and hospice death. It was also associated with greater spiritual need, need for care planning, and poorer patient and family insight (Spearman’s CONCLUSION: Severe communication problems were reported by team assessments in up to 40% of patients at the end of life. A multiprofessional approach is needed to recognize and improve this.
EFFECTIVE COMMUNICATION with cancer patients is now accepted to be an important component of care. Good information exchange can reduce psychological distress, encourage better levels of adherence, and instill realistic expectations.1 Conversely, if poor communication occurs, it is a major cause of distress.2 Training has been developed and evaluated for many of the critical points in cancer care, including breaking bad news, truth-telling, explaining treatment options, and giving information about clinical trials.3-7 However, end-of-life care is least studied. This may be in part because of scientific, practical, and ethical difficulties in collecting data about patients close to the end of life. Patient data are problematic because of sample bias, because the most ill patients do not complete questionnaires, and because cognitive impairment is common at this stage. Family members are difficult to approach around the time of death, and appear to change their assessments after bereavement. Team members may be biased by their own perceptions, but can be trained to provide a more accurate assessment. Studies among patients with far-advanced and progressive illness, or of their bereaved caregivers, indicate that three main areas of communication are important: (1) information-giving and an empathetic approach from professionals to patients; (2) communication between the patient and their family regarding end-of-life issues; and (3) communication between the different professionals involved in care, such as between doctors and nurses and between community and inpatient settings to avoid contradictory or redundant information and increased ambiguity.8-12 There is a dearth of information on levels of communication and its relationship with other domains affecting quality of life in cancer patients at the end of life. Much of the work on communication has concentrated on studies in the United States, the United Kingdom, or Australia. Case reports indicate that preferences for end-of-life communication are highly individual.13,14 Truth-telling and information-giving varies greatly between different countries,15 and its effect on patients is little studied, although deficiencies in hospital care have been found.16 It is commonly assumed that doctors in Scandinavian, north European, and North American countries invariably tell the truth, and doctors from south Mediterranean countries more rarely tell the truth, although this is an overgeneralization, and in Spain and Italy this situation is changing.17 Currently, we do not know the extent of communication problems at the end of life, nor do we know the parameters affecting communication in different patient groups. Therefore, as part of a larger European project appraising communication in different cultural contexts, we analyzed data collected on cancer patients by palliative care teams. Communication data in the last week of life had been collected in the same way in patient groups in three countries using a validated measure completed by the palliative care team. The instrument is not patient self-completed; instead, team members were instructed to record problems as they understood these to affect the patient. We wished to analyze the data to answer the following questions: What was the extent, or not, of communication problems? Were there differences between countries? Were problems in communication associated with either patient or family characteristics, or were they associated with other domains affecting quality of life?
Design Our analysis consisted of three prospective cohort studies of patients entering palliative care services.
Settings and Working Practices of the Services England. In the palliative care evaluation project, five palliative care teams were included, all based in the southeast of England. Two teams were primarily based in the community (one voluntarily managed and one managed by the National Health Service) and three were based within district or teaching hospitals and visited patients both in hospital and in the community. No team had inpatient beds for their own use but they would liaise closely with and arrange admission to local hospices or hospitals as the patient wished.18 Ireland. The Irish Cancer Society Project included six community teams working in Ireland. The teams were chosen to ensure a national spread of services and included some larger and smaller centers. The teams were based within local hospice services and visited patients in the local community. Teams did not manage beds but they would liaise closely with their colleagues within the hospice or in other local hospices to arrange admission and treatment as the patient wished.18 Italy. The Study to Investigate Timing of Referral and Palliative Care collected data on a random sample of all new referrals to 58 palliative care teams. Teams were multidisciplinary. Most were either community based, offering home care and funded by a mix of charitable and public money, or hospital based, linking a public hospital and a local charity to offer support both in hospitals and at home. There were three inpatient hospices.19
Data Collection
The STAS scores for the last week of life were completed by the multiprofessional team members in the first meeting of the team after patient death (usually 1 to 5 days after). They assessed the last week of the patient’s life.27 Each item was completed only if the team had enough information about the patient to record a value. If team members felt that they had not been able to assess an item properly, they were instructed to record the item as missing rather than making a guess. In all settings, training in the use of the STAS was given, either by the schedule developer (I.J.H.) or by an individual already trained by her. After training, every service (and often every team member) was provided with a handbook of definitions and instructions for scoring.31,32 Quality control checks occurred throughout the period of data collection, by regular visits to the service, by attending team meetings when assessments were discussed and, in Ireland and Italy, by meetings of participating services in each country.19,31,33,34 Translation of the STAS into Italian was followed by back-translation and training and checking and piloting in several of the centers.34
Statistical Analysis
Data were collected on 1,326 patients, 416 in the United Kingdom, 411 in Ireland, and 499 in Italy. Mean age was 68 years (range, 19 to 95 years), and 55% were male. There were small but significant differences between countries in age, patient status, primary caregiver, and primary tumor (Table 2). More United Kingdom patients lived alone (19%, v 7.7% in Ireland and 10.5% in Italy) than in the other two countries. Twice as many patients in Ireland (67%) were referred by their primary care physician than in the United Kingdom (29%) or Italy (32%). The time in care of the palliative team ranged from 1 to 1,155 days, and was shortest in Ireland (24 days, v 32 days in the United Kingdom and 33 days in Italy). Home death was least common in the United Kingdom (45%, v 72% in Ireland and 70% in Italy).
In all three countries, the most problems were recorded for the item "communication between patient and family" (more than 30% to 40% of assessments were recorded as 2 or more, indicating moderate, severe, or overwhelming problems). The least problems were recorded for the item "communication between professionals and patient and family" (more than 80% of cases were recorded as 0 [no problem] or 1). For all three items, most communication problems were recorded in Italy, and the least were recorded in Ireland (Table 3). This difference remained after adjusting for patient characteristics.
In both univariate and multivariate analyses, problematic communication between patient and family was more common for patients whose primary tumor was of the respiratory or digestive system and less common for those who spent a longer time in palliative care and who died at home. Problems in communication between professionals decreased with increasing patient age and longer time in palliative care, and were highest for patients with primary tumors of the breast and respiratory system. There were no associations between problematic communication and sex, whether the caregiver was a spouse or other relative, whether the patient lived alone, and referrer (Table 4).
When the relationship between communication and other domains affecting quality of life were explored, we found that communication problems were associated with greater spiritual problems, need for care planning, and poorer patient insight and family insight (Spearman’s  > 0.4) in both univariate and multivariate analysis, both within countries and for all data combined (Table 5). Figure 1models the relationships, as found in the multivariable linear regression analysis, between each communication item and the independent contributions of other domains. The relationships were consistent when individual countries were analyzed separately, although because the most severe problems were found in the United Kingdom and Italy, the model is most robust for these countries.
This is the first study to compare levels of communication and its effect on patients and families at the end of life in three countries. In all three countries, end-of-life communication problems (a STAS score of  2) were experienced for at least 10% to 20% of patients in relation to both communication between professionals and communication of professionals to patient and family. The proportion of cases with problems of communication between the patient and family was even higher, greater than 30% or 40%. In practice, there is no accepted gold standard or target to which communication problems should be reduced; this is the first study to report data that could contribute to setting standards in the future. It could be argued that if care and relationships were working well there would be no moderate to severe problems, although a target of 0% severe or moderate may be unrealistic. Our results indicate that more work is needed to support and improve communication between patients and their families, and that even with palliative care team input, one or two of every 10 patients will still be experiencing problematic communication. In the future, these results may also provide a useful contrast with care in other settings. Two diagnoses, primary tumor of the respiratory system and of the digestive system, were associated with greater problems in communication between patients and families. The reasons for this need further investigation, but it may be useful to consider the symptoms and effects of these two primary cancers. Breathlessness is a distressing symptom, which remains difficult to alleviate and is particularly associated with respiratory cancer.35,36 Cancers of the digestive system may be important because of their effects on eating and appetite—a common cause of conflict between patients and family members at the end of life—or because of appearance.37 Home death was associated with less communication problems between patients and families; conversely, those who died in a hospice had the largest communication problems. It may be that good communication between patients and families makes it easier for families to be involved in care and to provide support up to death. It may also mean that if more patients are to be supported at home until death, communication between patients and families needs to be improved. Given the high preferences for home care and home death among patients,38 this finding warrants investigation. All patients in this study were cared for by multiprofessional palliative care teams, which have specific goals of improving communication. Longer time in care of the team was associated with lessened communication problems, suggesting that teams had some success in achieving this goal, although they clearly need a period of time to work with patients and families. Patients and families not cared for by palliative care teams may have more severe problems than those found in this study.39 We found that communication was associated with other domains relevant to quality of life, particularly spiritual problems, planning needs, patient insight and family insight and, in some instances, the need to advise professionals, and patient and family anxiety. Our model suggests that, to improve communication, these domains should be considered. It is robust in the three countries included, although primarily for the United Kingdom and Italy, as fewer problems were reported in Ireland. Of course, there may be other domains, not yet measured, that are also important. However, the models provide a starting point for addressing communication, which suggests that, in addition to training in listening and communication skills, a multiprofessional approach to care is needed, with staff able to offer support in all these wider aspects. The association of spiritual problems with all three communication items surprised us. In this study, spiritual problems were taken to reflect a crisis of belief. Further work is needed to validate and explore these results in other settings. Taken as a whole, these results demonstrate the multidimensional interrelationship between patient needs and concerns, and support other data indicating that the multiprofessional team approach is an effective way of dealing with problems at the end of life.40-42 We found a difference in reported communication problems between countries, but selection and measurement biases may have affected these results. The Italian data included almost all palliative care units, whereas those of the United Kingdom and Ireland were from teams who volunteered to take part in the study. Thus, our results for the United Kingdom and Ireland probably represent best practice, and the true national situation is probably closer to that found for Italy. Also, despite the common training, there may be differences in the way that the STAS was applied in the different countries, particularly in Italy, where a translation was used. We do not know to what extent this could have affected the results. A further limitation of STAS is that it is derived from the palliative care team assessments rather than from information gained directly from the patient. In all three countries, the palliative care team staff were trained to specifically attempt identification of problems as perceived by the patient; however, it may be that there were errors in their assessment. Given the number of participating units (five + six + 58), no single professional could have affected the result. Further research is needed, but the validation work on the STAS demonstrated reasonable agreement between patients’ and trained palliative care staffs’ perceptions for communication items.21 However, it is likely that if biases in STAS assessments exist, these underestimate, rather than overestimate, communication problems43; communication problems, therefore, are likely to be at least those found in this study. Some recent studies have shown that data can be collected from family members or other surrogates, acting as proxies,44 and from patients45-47 regarding preferences for communication, information, and future care, although none included patients as far advanced as in this study, in the last week(s) of life. Ideally, we would wish to obtain information directly from patients and families about the last week of life, perhaps in a smaller sample to determine the validity of these data, and suggest that this should be the focus of a future study.
Supported in part by the European Commission, which funded Biomed II project no. PL96388 European Palliative Care: Ethics and Communication, and the International Union Against Cancer for the International Cancer Fellowship (to I.J.H.). We thank those involved in data collection, the European Commission (Biomed II project PL96388), the International Union Against Cancer, Bobbie Farsides, PhD, and our Journal of Clinical Oncology referees, for comments on the article.
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28. Higginson IJ, Wade AM, McCarthy M: Effectiveness of two palliative support teams. J Public Health Med 14: 50-56, 1992 29. Higginson IJ, McCarthy M: Measuring symptoms in terminal cancer: Are pain and dyspnoea controlled? J R Soc Med 82: 264-267, 1989[Abstract] 30. Higginson IJ: Outcome Measures in Palliative Care. London, National Council for Hospice & Specialist Palliative Care Services, 1995, ISBN 1 898915 06 7 31. Higginson IJ: Clinical Audit in Palliative Care. Oxford, Radcliffe; 1993 (appendix of staff manuals) 32. Higginson IJ, Butters E, Murphy F, McDonnell M: Computer database for palliative care. Lancet 340: 243-243, 1992[Medline] 33. Miccinesi G, Paci E, Toscani F, et al: Quality of life at the end of life: Analysis of the quality of life of oncologic patients treated with palliative care—Results of a multicenter observational study (STAGING). Epidemiol Prev 23: 333-345, 1999[Medline] 34. Toscani F: Classification and staging of terminal cancer patients: Rationale and objectives of a multicentre cohort prospective study and methods used. Support Cancer Care 4: 56-60, 1996
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47. Hofmann JC, Wenger NS, Davis RB, et al: Patient preferences for communication with physicians about end- of-life decisions: SUPPORT Investigators—Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Ann Intern Med 127: 1-12, 1997. Submitted October 31, 2001; accepted May 22, 2002. This article has been cited by other articles:
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
2 analysis of contingency tables) or other domains affecting quality of life (using Spearman’s 
). The association between patient characteristics and communication was then analyzed in multivariate logistic regression models, using as dependent variables the three communication items dichotomized into none/mild problem (rated 0 to 1), and moderate to severe (rated 2 to 4). Multivariable linear regression was used to identify the domains affecting quality of life that best predict poor communication. 
