Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients

Palliative Medicine 2000; 14: 287–298 Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients...
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Palliative Medicine 2000; 14: 287–298

Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients Eduardo Bruera Division of Symptom Control and Palliative Care, University of Texas, M.D. Anderson Cancer Center, Texas, Catherine M Neumann Division of Palliative Care Medicine, University of Alberta, Edmonton, Claudia Mazzocato and Fritz Stiefel Centre Hopitalier Universitaire Vaudois, Luasanne and Raul Sala Hospital Eva Peron, Rosario Abstract: The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada. A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists. Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that ‘do not resuscitate’ orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know. There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More

Address for correspondence: Dr Eduardo Bruera, Director, Department of Symptom Control and Palliative Care, The University of Texas, M.D. Anderson Cancer Centre, 1515 Holcombe Boulevard, Box 008, Houston, TX 77030, USA. © Arnold 2000

0269–2163(00)PM342OA

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E Bruera et al. research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world. Key words: attitude of health personnel; communication; cross-cultural comparison; neoplasms; palliative care Resumé : La communication entre praticiens de soins palliatifs et patients concernant le diagnostic et le pronostic de leur maladie est un sujet qui n’a pas été étudié de façon approfondie. Cette étude se proposait de comparer les points de vue et les convictions des spécialistes en soins palliatifs sur la communication avec les patients en phase terminale en Europe, Amérique du sud et Canada. Nous avons identifié un échantillon de médecins en soins palliatifs d’Amérique du sud (Argentine et Brésil), d’Europe francophone et du Canada et nous leur avons envoyé un questionnaire. Les médecins consacrant au moins 30% de leur temps aux soins palliatifs ont été considérés comme spécialistes. Sur un total de 272 questionnaires, 228 ont été retournés (84%) et 182/228 (81%) des répondeurs étaient des spécialistes en soins palliatifs. Ceux-ci considéraient dans les 3 pays que les patients devraient être informés du diagnostic et du caractère terminal de leur maladie. Les médecins dirent que leurs patients connaissaient le diagnostic et le caractère terminal de leur maladie dans respectivement 52% et 24% des cas en Amérique du Sud et 69% et 38% en Europe. Tous les médecins étaient d’accord avec l’idée qu’il devrait y avoir des consignes pour ne pas réanimer les patients et que ceci devrait toujours être discuté avec eux. Tandis que 93% des médecins canadiens ont déclaré qu’au moins 60% de leurs patients souhaitaient être au courant du stade terminal de leur maladie, ceci n’a été rapporté que par 18% des médecins sudaméricains et 26% des médecins européens (P < 0.001). Des résultats similaires ont été retrouvés quand on a demandé aux médecins quel était le pourcentage de familles souhaitant que les patients sachent qu’ils étaient en phase terminale. Cependant, la plupart des médecins disaient qu’en cas de cancer en phase terminale, ils voudraient le savoir. Il existait un lien significatif entre la volonté de savoir et sexe féminin (P = 0.007), âge avancé (P = 0.04) et origine canadienne et sud-américaine des médecins (P < 0.001). Finalement dans leurs décisions au quotidien, les médecins sud-américains s’appuyaient plus sur les notions de bienfaisance et de justice que de respect de l’autonomie. Les médecins canadiens s’appuyaient plus sur l’autonomie que sur la bienfaisance. En résumé, nos résultats suggèrent que les comportements et convictions des médecins en matière de communication en fin de vie varient beaucoup d’une région à l’autre. Il y a grand besoin de recherche supplémentaire sur les points de vue et convictions des patients, familles et professionnels de santé à travers le monde. Mots-clés: points de vue des personnels de santé; communication; comparaison interculturelle; néoplasies; soins palliatifs

Beliefs of palliative care physicians regarding communication with patients

Introduction The modern hospice movement evolved in the 1960s in the UK.1 Since then, this British movement has become global. The basic principles of palliative care include excellence in the assessment and management of physical and psychosocial symptoms, and communication with patients and families.2,3 During recent years, there has been consensus on the most effective assessment and management of different symptoms.2,3 However, there has been very limited research on communication with patients and families regarding the diagnosis and prognosis. While in most of Northern Europe and North America patients are regularly given the diagnosis of cancer and the most accurate prognosis known by the physician, in other regions such as Spain,4 southern and eastern Europe,5 South America,6 Japan,7–9 Lebanon,10 and Greece,11 diagnosis and prognosis are only seldom discussed with patients and/or their families. Palliative care physicians work within this context and in close collaboration with surgeons and cancer specialists in their own countries. There has been a limited number of studies addressing the attitudes and beliefs of palliative care specialists who work in these different areas around the world. The purpose of this survey was to compare the attitudes and beliefs regarding communication with the terminally ill by palliative care specialists working in South America, French-speaking regions of Europe, and Canada.

Methods This prospective survey was conducted in three physician populations. 1) A group of palliative care specialists from South America: this group of physicians was surveyed during the World Health Organization sponsored course on Palliative Medicine conducted in Rosario, Argentina, 16–18 December 1998. Physicians were presented with the Spanish version of the questionnaire. All physicians who participated in the course were invited to complete the questionnaire anonymously. All physicians chose to participate and returned their

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questionnaire and expressed no concerns regarding the content. 2) We mailed 173 questionnaires to Frenchspeaking palliative care specialists from France and the French-speaking areas of Switzerland and Belgium; 136 questionnaires were returned (79%). For France (136 physicians), the list was obtained from the French Society of Palliative Care. In the French region of Switzerland (13 physicians), 13 specialists were identified from the Swiss Society of Palliative Care. In Belgium there is no formal society of palliative care physicians. Therefore, Belgian physicians (24 physicians) were identified as such when they were registered in either the French or the Swiss palliative care societies 3) The Canadian physicians were identified from the membership list of the Canadian Society of Palliative Care Physicians. Questionnaires were mailed to a random sample of 70 physicians. The method chosen for the identification and contact of South American physicians was different because of the lack of reliable lists of palliative care physicians in the region and because of serious problems with access by mail in this part of the world. These three groups were chosen because they represented three very different regions in the world, and local investigators were available for conducting the study. The questionnaire, initially presented in Spanish to the South American physicians, was doubletranslated into both French and English. The questionnaire was initially translated into English or French by one individual and a second individual then translated that questionnaire back into Spanish. When differences in the wording were identified, the process was repeated until the retranslated questionnaire was identical to the original copy. A copy of the questionnaire is included as an appendix. In the case of both Canadian and European physicians, an initial mail-out was followed by a second mail-out within approximately 4 weeks. Initial plans included direct telephone and/or fax contact if a minimal sample of 65% of returned questionnaires was not achieved after the second mail-out. However, because of excellent compliance by the physicians, there was no need to

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proceed with the direct telephone or fax contact. For the purpose of this study, only those physicians who practise palliative care more than 30% of their time were considered specialists. Therefore, the survey added a question regarding the percentage of participation in direct palliative patient care by physicians. Only those who replied that they spent at least 30% of their time doing this were considered eligible for this survey. The data were not normally distributed, and are therefore reported as medians with interquartile range, and proportions. Data were analysed using the Kruskal Wallis test for multiple comparisons, the chi-square test for the comparison of proportions within a group, and multivariate correlation for the comparison of multiple continuous variables. Data were analysed using the Statistical Package for the Social Sciences (SPSS) for Windows.

Results All the 29 South American physicians who participated completed and returned their questionnaire; 136/173 European physicians (79%) returned their questionnaires after the second mail-out. This included 110/136 French physicians (81%), 12/13 Swiss physicians (93%), and 14/24 Belgian physicians (58%). Questionnaires were returned by 63/70 Canadian physicians after the second mail-out (90%). Out of a total of 228 physicians, 182 were suitable for evaluation based on the criterion that these physicians practised palliative care at least 30% of the time. This included 29/29 South American physicians, 42/63 Canadian physicians and 111/136 European physicians. Table 1 summarizes the characteristics of the 182 physicians suitable for evaluation in the three different regions. The distribution according to

gender was not significantly different according to region and was approximately 50% for female physicians. All three groups strongly believed that all cancer patients should be informed of their diagnosis, even though the European and South American physicians reported that not all of their patients knew their diagnosis (Table 2); the Canadians disagreed with this more frequently than the South Americans or Europeans (P = 0.029; Table 2). Most European and Latin American physicians stated that most of their patients were not aware of the terminal nature of their illness (Table 2). However, all three groups strongly believed that all patients should know the terminal stage of their illness (P = 0.40; Table 2). European physicians were the least likely to find a ‘Do not resuscitate’ order regarding their patients (P < 0.001; Table 3). However, they believed that those orders should be present just as strongly as the Canadian and Latin American physicians (P = 0.22; Table 3). All three groups agreed on the appropriateness of discussing the orders with the patient (or proxy when the patient could not communicate) in all cases (P = 0.58; Table 3). The European and South American physicians strongly disagreed with Canadian physicians regarding the percentage of their patients who wanted to know the terminal stage of their illness (P < 0.001; Table 4). Both European and South American physicians strongly believed that only a minority of their patients would want to know their terminal stage. European and South American physicians also strongly disagreed with Canadian physicians regarding the willingness in families for the patients to be informed (P < 0.001; Table 4). On the other hand, all three groups of physicians strongly agreed that, if they had terminal cancer themselves, they would like to know their situation (P = 0.37; Table 4). They also strongly agreed that

Table 1 Physician characteristics South America

Europe

P-value

Age mean (SD), years

38 (6)

44 (8)

47 (9)

< 0.001

44 (8)

Gender, male/female

16/13

56/55

23/19

n.s.

95/87

74 (26)

79 (27)

0.001

80 (26)

100

42

Overall

29

Mean (SD), percentage time spent in palliative care

110

Canada

Numbers, N

182

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Table 2 Questions dealing with truth telling South America % of patients knowing diagnosis of cancer Median (interquartile range)a Proportion of physicians who answered > 60% of their patients All patients with cancer should be informed of their diagnosis Median (interquartile range)b Proportion of physicians who moderately/completely disagreed % of patients knowing terminal stage of illness Median (interquartile range)a Proportion of physicians who answered < 60% of their patients All patients should know terminal stage of their illness Median (interquartile range)b Proportion of physicians who moderately/ completely disagreed a1

4 (2–4) 52%

2 (1–2) 7%

3 (1–3.25) 24%

2 (2–3) 17%

Canada

Europe

P-value

5 (5–5) 100%

4 (3–5) 69%

< 0.001 < 0.001

1 (1–2) 3%

0.315 0.029

5 (5–5) 93%

3 (2–4) 38%

< 0.001 < 0.001

2 (1–2) 7%

2 (2–2) 14%

0.057 0.398

1.5 (1–2) 14%

< 20%; 2 > 20–40%; 3 > 40–60%; 4 >60–80%; 5 > 80%. completely agree; 2: moderately agree; 3: neither agree nor disagree; 4: moderately disagree; 5: completely disagree.

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if a member of their own direct family had terminal cancer, they would inform them of their situation (P = 0.33; Table 4). All three groups of physicians agreed that the quality of life of patients who know their diagnosis and terminal stage is better (P = 0.37; Table 4). The South Americans reported significantly more decision making by doctors, as compared with Canada and Europe. The three physician groups

agreed that a joint decision-making strategy was most appropriate in their work place (Table 5). However, female physicians were significantly more likely to support patient-based decision making (P = 0.007). In a multivariate correlation, a significant association persisted between patientbased decision making and female sex, older age, and physicians from Canada and South America (Table 6).

Table 3 Questions dealing with ‘Do not resuscitate’ orders South America % of patients who die of terminal cancer who have DNR order Median (interquartile range)a Proportion of physicians who answered > 60% of their patients All patients who die of terminal cancer should have DNR order Median (interquartile range)b Proportion of physicians who moderately/ completely disagreed DNR order should be discussed with patient (or proxy if patient not available) in all cases Median (interquartile range)b Proportion of physicians who moderately/ completely disagreed a1

5 (4–5) 83%

1 (1–1.25) 3%

2 (1–3) 17%

Canada

Europe

P-value

5 (5–5) 95%

4 (1–5) 57%

< 0.001 < 0.001

2 (1–2) 17%

1 (1–2) 15%

0.019 0.216

1 (1–2) 20%

2 (1–2) 13%

0.689 0.575

< 20%; 2 > 20–40%; 3 < 40–60%; 4 > 60–80%; 5 > 80%. completely agree; 2: moderately agree; 3: neither agree nor disagree; 4: moderately disagree; 5: completely disagree.

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Table 4 Questions about the patients’ willingness to know their diagnosis

% of patients who want to know terminal stage of their illness Median (interquartile range)a Proportion of physicians who answered

South America

Canada

Europe

P-value

2 (1.75–3) 18%

5 (4–5) 93%

3 (2–4) 26%

< 0.001 < 0.001

2 (1–3) 7%

< 0.001 < 0.001

% of families who want the patient to know the terminal stage of their illness Median (interquartile range)a Proportion of physicians who answered ≥ 60% of their patients

1 (1–2) 0%

4 (4–5) 81%

If I had a terminal cancer I would like to know Median (interquartile range)b Proportion of physicians who moderately/ completely disagreed

1 (1–1) 0%

1 (1–1) 5%

If a member of my family had terminal cancer I would inform them Median (interquartile range)b Proportion of physicians who moderately/ completely disagreed

2 (1.75–2) 3%

In my opinion, the quality of life of a person who knows the diagnosis and terminal stage of their illness is ______ than the quality of life of a person who ignores the diagnosis and prognosis Median (interquartile range)c Proportion of physicians who answered somewhat/much more a1

2 (1–3) 7%

1 (1–1.25) 2%

0.020 0.371

1 (1–2) 14%

2 (1–3) 11%

0.059 0.334

2 (1–2) 2%

2 (1–3) 2%

0.869 0.366

< 20%; 2 > 20–40%; 3 > 40–60%; 4 > 60–80%; 5 > 80%. completely agree; 2: moderately agree; 3: neither agree or disagree; 4: moderately disagree; 5: completely disagree. much better; 2: somewhat better; 3: neither better nor worse; 4: somewhat worse; 5: much worse.

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Table 5 Decision making MD decision

Shared decision

Patient decision

Most frequent in workplace % (CI) South America Canada Europe

83 (69–97)% 45 (30–60)% 68 (59–77)%

10 (−1–21)% 43 (27–58)% 31 (22–40)%

7 (−2–16)% 13 (3–23)% 2 (−1–5)%

Most appropriate for workplace % (CI) South America Canada Europe

14 (1–27)% 7 (−1–15)% 24 (15–33)%

76 (61–92)% 64 (50–79)% 68 (59–77)%

10 (−1–21)% 29 (15–43)% 8 (3–13)%

P-value 0.003

0.006

Table 6 Multiple regression of physicians opinion on the appropriate model for decision making Decision making (1 = MD decision; 5 = patient decision) Variablea

Correlation coefficient

Age Gender (female) Male Percentage of time in palliative care Country (Canada) South America Europe aReference

group in parentheses

P-value

0.17

0.04

−0.21 0.0

0.007 1.0

−0.09 −0.32

0.3 < 0.001

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Finally, in their daily decision making, the South American physicians were significantly more likely to support beneficence (Figure 1a) and justice (Figure 1b) as compared to autonomy. On the other hand, Canadian physicians were more likely to support autonomy as compared to beneficence (Figure 1a) and beneficence as compared to justice (Figure 1c).

Discussion In this study, we surveyed the attitudes and beliefs of palliative care physicians in three different regions of the world. Our findings suggest that there are significant regional differences in the patterns of practise regarding communication at the end of life. With the exception of the UK, there is not a fully established medical specialty for palliative care physicians. Therefore, it is very difficult to obtain data representative samples of practising palliative care physicians. In those countries where societies were available, we chose to obtain random samples of the membership list. However, the societies frequently have a mixture of those who practice palliative care daily and those who have mostly an academic interest in this area of knowledge. Since we wanted to survey the experience of those involved in daily patient care, we considered a minimum of more or equal to 30% practice in palliative care as a criterion for eligibility. Future research will be facilitated as the criteria for this specialty develop, probably following the UK model. Past research has focused mostly on the attitudes and beliefs of family physicians, oncologists, or psychiatrists.12–14 These individuals have very limited training in palliative care, and, in many cases, limited experience with terminally ill patients. Therefore, their differences in opinion may not necessarily reflect those of specialists in palliative care in their own regions. Our main interest was to see whether previously reported differences in communication in different regions3,4,7,15 also existed among palliative care specialists practising in these regions. Our findings strongly suggest that palliative care physicians in the three regions have significant differences in their beliefs regarding communication. Canadian physicians predictably worked in an environment in which almost all patients were

Figure 1 Related importance of the ethical principles in the daily decision making of palliative care physicians in each of the three regions (0–3: support for the principle named on the left end of the axis; 4–6: neutral; 7–10: support for the principle named on the right end of the axis)

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aware of their diagnosis of cancer. They supported a high level of information for patients regarding diagnosis and prognosis and they were more inclined to support autonomy as the most important ethical decision-making principle in their daily practise. However, the Canadian physicians were the most likely to feel that the universal disclosure of the diagnosis was not appropriate. It is possible that the Canadian physicians have witnessed the ‘assault of the truth’, in which the disclosure of the diagnosis is made inappropriately.16 Future studies should address these findings in more depth. South American and European physicians work in conditions where a substantial proportion of patients are not aware of both diagnosis and terminal stage of illness (Table 2). However, palliative care physicians in both regions strongly believed that patients should be aware of both the diagnosis and terminal stage of their illness. It is likely that South American and European physicians are influenced in their communication by their perception of the wishes of patients and relatives (Table 4), as well as by the attitude of their healthcare professional colleagues.4,7 Future studies should assess the communication needs as

perceived by patients in all three regions. Such studies may be difficult to conduct because of likely problems with both physician and patient participation. South American physicians valued autonomy relatively less than justice and beneficence, as compared to Canadians. This might reflect a more paternalistic pattern of practice or perhaps increased concern about financial status and access to health care. The European physicians’ attitudes were generally in between the other two groups. There has been a major evolution in communication regarding diagnosis and prognosis in North America over the past thirty years.11,17 This study is not able to ascertain whether the differences between the Canadian physicians and the other two groups are simply at a different stage of evolution or whether they truly reflect major differences in cultural values in the three regions. At any rate, the differences are quite significant at present, although there has been significant globalization of medical education due to increased access to travelling and both written and audiovisual information. While Latin American physicians tend to support a beneficence-based palliative care

Figure 2 A theoretical construct of the distribution of responses to ethical principles in palliative care in developing and developed countries

Beliefs of palliative care physicians regarding communication with patients practise, Canadians were more likely to support autonomy as the most important principle. However, there was significant variation in the response by both groups. Figure 2 suggests an explanation for this variability. While there seems to be a perception by the Latin American physicians that most of their patients prefer a more beneficence-oriented approach, and the opposite appears to be perceived by Canadians, it is likely that in both regions there are patients who prefer the opposite approach. Future research should attempt to determine how accurately physicians are able determine the needs of specific patients when they approach communication. Although ‘Do not resuscitate’ orders were present less frequently among the European physicians, there appeared to be consensus among all three groups on the importance of having these orders and discussing them with the patient or proxy in all cases (Table 3). Future research should establish why patients dying under the care of European palliative care physicians frequently do not have a ‘Do not resuscitate’ order, even though the physicians appear to believe strongly that these orders are appropriate. Both European and South American physicians felt that only a minority of their patients wanted to know the terminal nature of their illness (Table 2) and favoured patient-based decision making less frequently when compared to their Canadian colleagues (Table 5). As previously discussed, this pattern of communication could potentially evolve in a similar way as has occurred in North America, or it could reflect stable cultural differences. This should be addressed in future research. While all three groups of physicians shared a transcultural agreement about wanting to be informed of their diagnosis (Table 4), there was significant disagreement regarding their opinions as to what their patients wanted. The reasons for their perception should be further investigated. The Canadian physicians were slightly older than the Europeans or South Americans (Table 1), therefore, some of the observed differences might be due to increased age and experience of their groups. Future studies should determine the years of experience of participating physicians to test this hypothesis. Over the three groups, female physicians were more likely to support patient-based decision making as compared to their male colleagues.

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Future research should attempt to better characterize this difference. Our results suggest that the difference in the attitudes and beliefs of palliative care physicians in different regions of the world should be better characterized and explored. International palliative care delivery programmes, as well as research and educational international efforts, should respect these differences. Future research should address the opinion of patients and families in these regions of the world in order to assist national and international groups in the development of strategies for the education of healthcare professionals in communication. The main limitations of this study were the more simplistic nature of the questions asked on part of the questionnaire, and the fact that physicians were interviewed about their recall of experience, rather than as part of a prospective survey. In the future, social scientists may be helpful in helping to ascribe the differences to ethical, cultural, or sociodemographic characteristics of the population. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. Reaching consensus on this issue might be more difficult than on physical symptoms such as pain or nausea, due to the strong emphasis of culture in patterns of communication. More research is needed on the attitudes and beliefs of patients, families, and healthcare professionals in different regions of the world.

References 1 Doyle D. The development of palliative care. In: Doyle D, Hanks GW, MacDonald N eds. Oxford textbook of palliative medicine, 2nd edition. Oxford: Oxford University Press, 1998: 5–15. 2 Bruera E, Neumann CM. Management of specific symptom complexes in patients receiving palliative care. CMAJ 1998; 158: 1717–26. 3 Bruera E, Suarez-Almazor M. Cost effectiveness in palliative care [editorial]. Palliat Med 1998; 12: 315–16. 4 Centeno-Cortes C, Nuñez-Olarte JM. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients’ responses. Palliat Med 1994; 8: 39–44. 5 Thomsen OO, Wulff HR, Martin A, Singer PA. What do gastroenterologists in Europe tell cancer patients? [Comments]. Lancet 1993; 341: 473–76.

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6 Wenk R. Argentina: status of cancer pain and palliative care. J Pain Symptom Manage 1993; 8: 385–87. 7 Voltz R, Akabayashi A, Reese C, Ohi G, Sass HM. Organization and patients’ perception of palliative care: a crosscultural comparison. Palliat Med 1997; 11: 351–57. 8 Uchitomi Y, Yamawaki S. Truth-telling practice in cancer care in Japan. Ann NY Acad Sci 1997; 809: 290–99. 9 Elwyn TS, Fetters MD, Gorenflo W, Tsuda T. Cancer disclosure in Japan: historical comparisons, current practices. Soc Sci Med 1998; 46: 1151–63. 10 Hamadeh GN, Adib SM. Cancer truth disclosure by Lebanese doctors. Soc Sci Med 1998; 47: 1289–94. 11 Rigatos GA. Cancer and truth-telling in Greece. Historical, statistical, and clinical data. Ann NY Acad Sci 1997; 809: 382–92. 12 Todd C, Still A. General practitioners’ strategies and tactics of communication with the terminally ill. Fam Pract 1993; 10: 268–76.

13 Ganzini L, Fenn DS, Lee MA, Heintz RT, Bloom JD. Attitudes of Oregon psychiatrists toward physician-assisted suicide [Comment]. Am J Psychiatry 1996; 153: 1469–75. 14 Hoffmaster CB, Stewart MA, Christie RJ. Ethical decision making by family doctors in Canada, Britain and the United States. Soc Sci Med 1991; 33: 647–53. 15 Wenk R, Ochoa J. Argentina: status of cancer pain and palliative care. J Pain Symptom Manage 1996; 12: 97–98. 16 Butow PN, Dunn SM, Tattersall MHN. Denial, misinformation and the ‘assault of the truth’. In: Portenoy RK, Bruera E eds. Topics in palliative care, Volume 1. New York: Oxford University Press, 1997: 263–78. 17 Dickinson GE, Tournier RE. A decade beyond medical school: a longitudinal study of physicians’ attitudes toward death and terminally-ill patients. Soc Sci Med 1994; 38: 1397–400.

❏ ❏ ❏ ❏ ❏

Appendix Age ______

Sex ______

What percentage of your time do you spend practising palliative care (0–100%): ______ 4) 1)

What percentage of your patients know their diagnosis of cancer? ❏ ❏ ❏ ❏ ❏

2)

3)

Completely agree Moderately agree Neither agree nor disagree Moderately disagree Completely disagree.

What percentage of your patients know the terminal stage of their illness?

Completely agree Moderately agree Neither agree nor disagree Moderately disagree Completely disagree.

5)

In this visual analogue scale, we are reporting ethical principles in each of the two extremes. Please cross the line near the principle you find most important in your daily medical practice.

e.g.:

Autonomy: ‘What my patient wants’ Beneficence: ‘What I believe is best for my patient’ Justice: ‘Fair distribution of healthcare resources for all patients’

All patients with cancer should be informed of their diagnosis. ❏ ❏ ❏ ❏ ❏

All patients should know the terminal stage of their illness. ❏ ❏ ❏ ❏ ❏

≤ 20% 20–40% > 40–60% > 60–80% > 80%.

≤ 20% > 20–40% > 40–60% > 60–80% > 80%.

Beliefs of palliative care physicians regarding communication with patients Autonomy

____________________ Beneficence

Autonomy

____________________ Justice

10)

6)

In which percentage of your patients who die of terminal cancer is there a ‘Do not resuscitate’ order? ❏ ❏ ❏ ❏ ❏

7)

12)

13) Completely agree Moderately agree Neither agree nor disagree Moderately disagree Completely disagree.

To inform all patients of their diagnosis of cancer and terminal stage is considered by the healthcare professionals in my workplace as:

Ideal for the patient and family

Worst for the patient and family

Not stressful for the patient and family

Extremely stressful for the patient and family

≤ 20% > 20–40% > 40–60% > 60–80% > 80%.

If I had terminal cancer, I would like to know my situation. ❏ ❏ ❏ ❏ ❏

The ‘Do not resuscitate’ order should be discussed with the patient (or proxy when the patient cannot communicate) in all cases. ❏ ❏ ❏ ❏ ❏

9)

Completely agree Moderately agree Neither agree nor disagree Completely disagree.

≤ 20% > 20–40% > 40–60% > 60–80% > 80%.

What percentage of the families want the patient to know the terminal stage of their illness? ❏ ❏ ❏ ❏ ❏

All patients who die of terminal cancer should have a ‘Do not resuscitate’ order. ❏ ❏ ❏ ❏

8)

11)

≤ 20% > 20–40% > 40–60% > 60–80% > 80%.

What percentage of your patients want to know the terminal stage of their illness? ❏ ❏ ❏ ❏ ❏

Beneficence ____________________ Justice

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Completely agree Moderately agree Neither agree nor disagree Moderately disagree Completely disagree.

If a member of my direct family (not healthcare professionals) had terminal cancer, I would inform them of their situation. ❏ ❏ ❏ ❏ ❏

Completely agree Moderately agree Neither agree nor disagree Moderately disagree Completely disagree.

298 14)

E Bruera et al. Decision making is most frequently made in my work place in the following way: (This question does not reflect to your personal practice, but rather to the usual practice in your working environment [e.g. hospital, clinic, etc].) ❏ The physician makes the decisions. ❏ The physician decides after consulting with the patient. ❏ The physician and the patient decide jointly. ❏ The patient decides after consulting with the physician. ❏ The patient makes the decisions.

15)

In my opinion, of the different options presented in question 14, the most appropriate is: ❏ 1. ❏ 2. ❏ 3. ❏ 4. ❏ 5.

16)

In my opinion, the quality of life of a person who knows the diagnosis and terminal stage of their illness is: ❏ Much better than the quality of life of a person who ignores the diagnosis and prognosis ❏ Somewhat better ❏ Neither better nor worse ❏ Somewhat worse ❏ Much worse.

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