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Diagnosis and prognosis disclosure among cancer patients. Results from an Italian mortality follow-back survey

2006; Elsevier BV; Volume: 17; Issue: 5 Linguagem: Inglês

10.1093/annonc/mdl028

1569-8041

Massimo Costantini, Gabriella Morasso, Marco Montella, Piero Borgia, R. Cecioni, Monica Beccaro, Erica Sguazzotti, Paolo Bruzzi,

Patient Dignity and Privacy

Background: The observed cultural changes in truth-telling attitudes suggest a radical change in the practice of delivering information to cancer patients, but limited research is available from countries known for their policy of non-disclosure. This study estimates the proportion of Italian who died of cancer who had received information about diagnosis and prognosis, and explores the variables associated with disclosure.Materials and methods: This is a mortality follow-back survey of 1271 non-professional caregivers of Italians who died of cancer in 2002, representative of the approximate 160 000 Italian annual cancer deaths. Caregivers were interviewed after the patient's death about the process of diagnosis and prognosis disclosure.Results: It was estimated that 37% of people who died of cancer had received information about diagnosis and 13% about poor prognosis. A consistent proportion, although non-informed, knew the diagnosis (29%) and the poor prognosis (50%). The probability to be informed was higher for patients living in the north of Italy, young, well educated, with longer survival, and with breast or head and neck tumor.Conclusions: These findings suggest that not necessarily the observed cultural changes towards a less paternalistic approach in medical care translate into an effective change in the quantity of information delivered to the patients. Background: The observed cultural changes in truth-telling attitudes suggest a radical change in the practice of delivering information to cancer patients, but limited research is available from countries known for their policy of non-disclosure. This study estimates the proportion of Italian who died of cancer who had received information about diagnosis and prognosis, and explores the variables associated with disclosure. Materials and methods: This is a mortality follow-back survey of 1271 non-professional caregivers of Italians who died of cancer in 2002, representative of the approximate 160 000 Italian annual cancer deaths. Caregivers were interviewed after the patient's death about the process of diagnosis and prognosis disclosure. Results: It was estimated that 37% of people who died of cancer had received information about diagnosis and 13% about poor prognosis. A consistent proportion, although non-informed, knew the diagnosis (29%) and the poor prognosis (50%). The probability to be informed was higher for patients living in the north of Italy, young, well educated, with longer survival, and with breast or head and neck tumor. Conclusions: These findings suggest that not necessarily the observed cultural changes towards a less paternalistic approach in medical care translate into an effective change in the quantity of information delivered to the patients. introductioThe practice of medicine is refocusing from the traditional paternalistic model, in which patient involvement is limited to giving or refusing consent to treatment, to a partnership approach, in which the process of shared decision-making requires full information on all the possible outcomes associated with each treatment option [1.Coulter A. The Autonomous Patient. Ending Paternalism in Medical Care.3rd edition. Nuffield Trust, London2002Google Scholar]. This change is particularly important for patients with advanced cancer, where the choice between different options often requires a difficult trade-off between quantity and quality of life.An obvious prerequisite for an effective shared decision-making approach in oncological practice is that the patients are informed about the nature and prognosis of their disease. Until the second half of the 20th century, the practice of concealing the diagnosis of cancer and its prognosis was prevalent in medicine. Physicians' attitude changed dramatically in the last decades. In the USA, between 1961 and 1979, the proportion of physicians indicating a preference for not telling a cancer patient his diagnosis, fell from 90% to 3% [2.Novack D.H. Plumer R. Smith R.L. et al.Changes in physician's attitudes toward telling the cancer patient.JAMA. 1979; 241: 897-900Crossref PubMed Scopus (534) Google Scholar]. Similar changes have been documented in other countries, although with slower trends in southern and eastern Europe [3.Thomsen O. Wulff H.R. Martin A. Singer P. What do gastroenterologists in Europe tell cancer patients?.Lancet. 1993; 341: 473-476Abstract PubMed Scopus (173) Google Scholar]. Moreover, during the last two decades, a number of surveys involving healthy subjects [4.Fielding R. Hung J. Preferences for information and involvement in decisions during cancer care among a Hong Kong Chinese population. Psycho-.Oncol. 1998; 5: 321-329Google Scholar, 5.Di Mola G. Crisci M.T. Attitudes towards death and dying in a representative sample of the Italian population.Palliative Med. 2001; 15: 372-378Crossref PubMed Scopus (24) Google Scholar], cancer patients [6.Pronzato P. Bertelli G. Losardo P. Landucci M. What do advanced cancer patients know of their disease?.Support Care Cancer. 1994; 2: 242-244Crossref PubMed Scopus (122) Google Scholar, 7.Meredith C. Symonds P. Webster L. et al.Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.Brit Med J. 1996; 313: 724-726Crossref PubMed Scopus (456) Google Scholar, 8.Pimentel F.L. Ferreira J.S. Real M.V. et al.Quantity and quality of information desired by Portuguese cancer patients.Support Care Cancer. 1999; 7: 407-412Crossref PubMed Scopus (43) Google Scholar, 9.Shaun O.T. Noone I. Pillay I. Telling the truth about cancer: views of elderly patients and their relatives.Ir Med J. 2000; 93: 104-105PubMed Google Scholar, 10.Jenkins V. Fallowfield L. Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres.Brit J Cancer. 2001; 84: 48-51Crossref PubMed Scopus (660) Google Scholar, 11.Ajaj A. Singh M.P. Abdulla A.J.J. Should elderly patients be told they have a cancer? Questionnaire survey of older people.Brit Med J. 2001; 323: 1160Crossref PubMed Scopus (58) Google Scholar] and, to a lesser extent, their relatives [9.Shaun O.T. Noone I. Pillay I. Telling the truth about cancer: views of elderly patients and their relatives.Ir Med J. 2000; 93: 104-105PubMed Google Scholar, 12.Mystakidou K. Parpa E. Tsilika E. et al.The families evaluation on management, care and disclosure for terminal stage cancer patients.BMC Palliative Care. 2002; 31Google Scholar], indicated that the majority of individuals prefer to receive detailed information about the disease and expected outcomes.Although these cultural changes in attitudes seem to suggest a radical change in the current practice of delivering information about diagnosis and prognosis to cancer patients, most of these findings were from selected cohorts of patients, often from academic centers [6.Pronzato P. Bertelli G. Losardo P. Landucci M. What do advanced cancer patients know of their disease?.Support Care Cancer. 1994; 2: 242-244Crossref PubMed Scopus (122) Google Scholar, 13.Mosconi P. Meyerowitz B.E. Liberati M.C. Liberati A. Disclosure of breast cancer diagnosis: patients and physician reports.Ann Oncol. 1991; 2: 273-280Abstract Full Text PDF PubMed Scopus (85) Google Scholar, 14.Estapè J. Palombo H. Herandez E. et al.Cancer diagnosis disclosure in a Spanish hospital.Ann Oncol. 1992; 3: 451-454Abstract Full Text PDF PubMed Scopus (71) Google Scholar, 15.Veronesi A. Busato C. Annunziata M.A. et al.Prospective analysis of the information level of Italian cancer patients.Eur J Cancer. 1995; 31: 425-426Abstract Full Text PDF Scopus (11) Google Scholar, 16.The Italian Group for the Evaluation of Outcomes in Oncology (IGEO) Awareness of disease among Italian cancer patients: is there a need for further improvement in patient information?.Ann Oncol. 1999; 10: 1095-1100Abstract Full Text PDF PubMed Scopus (34) Google Scholar, 17.Caruso A. Di Francesco B. Pugliese P. et al.Information and awareness of diagnosis and progression of cancer in adult and elderly cancer patients.Tumori. 2000; 86: 199-203Crossref PubMed Scopus (52) Google Scholar, 18.Hagerty R.G. Butow P.N. Ellis P.M. et al.Communicating prognosis in cancer care: a systematic review of the literature.Ann Oncol. 2005; 16: 1005-1053Abstract Full Text Full Text PDF PubMed Scopus (350) Google Scholar]. Moreover, the literature is scanty in those countries known for their policy of non-disclosure.The Italian Survey of Dying Of Cancer (ISDOC) is an Italian mortality follow-back survey in which information about the advanced and terminal phase of cancer disease were gathered from the caregivers, interviewed 4–8 months after the patient's death [19.Costantini M. Beccaro M. Merlo F. The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian survey of the dying of cancer (ISDOC).Palliative Med. 2005; 19: 628-638Crossref PubMed Scopus (64) Google Scholar]. This paper reports the results from a specific section of the interview that focused on the disclosure of cancer diagnosis and the related poor prognosis of disease itself. More specifically, these analyses were aimed at:(i) estimating the proportion of Italian patients who died of cancer, who had been clearly informed or, although not informed, were aware about the nature and prognosis of their disease;(ii) describing some circumstances of the disclosure of this information (who and when gave the information);(iii) exploring the association between a number of characteristics (of patients, disease and caregivers) and the disclosure of diagnosis and prognosis.materials and methodthe Italian Survey of Dying of Cancer (ISDOCA two-stage probability sample was used to estimate end-of-life outcomes of approximately 160 000 annual Italian cancer deaths. In the first stage, 30 of the 197 existing Local Health Districts (LHD), stratified by four geographical areas, were randomly selected. In the second stage, a fixed proportion of adult cancer deaths (i.e. aged 18 years or more) was drawn from each LHD, and a final sample of 2000 death certificates of deceased for cancer between March 2002 and June 2003 was identified [19.Costantini M. Beccaro M. Merlo F. The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian survey of the dying of cancer (ISDOC).Palliative Med. 2005; 19: 628-638Crossref PubMed Scopus (64) Google Scholar].The non-professional caregiver, defined as the closest and the best-informed person about the last 3 months of life of the patient, was identified for 92% of the sample (n = 1843). A professional caregiver was identified for 57 deceased (3%) who were alone and without any non-professional support. An interview was obtained from 1289 (68%) of the 1900 identified caregivers at a median time of 234 days after the patients' death (range 103–374). Of the 611 non-interviewed caregivers, 161 (9%) could not be located, 383 (20%) refused to be interviewed, 45 (2%) were deceased or too ill to participate. Twenty-two interviews (1%) were not conducted because of staff errors. In addition, six patients whose cause of death was not cancer and 12 without a terminal phase of disease (because they died during the diagnostic phase, during active treatments or because diagnosis was post mortem), were excluded from all the statistical analysis, leaving a total sample of 1271 valid interviews. Interviews were conducted less frequently among patients who died in hospital (OR = 0.6; 95% CI 0.4–0.7) than in those who died at home, and in patients with a low level rather than in those with a high level of education. No significant differences by age, gender, marital status and primary tumor were observed [19.Costantini M. Beccaro M. Merlo F. The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian survey of the dying of cancer (ISDOC).Palliative Med. 2005; 19: 628-638Crossref PubMed Scopus (64) Google Scholar].data collectioA trained health professional conducted a semi-structured interview with the caregiver using an adapted version of the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire [20.Addington-Hall J.M. The Mccarthy M. Regional Study of Care for the Dying: methods and sample characteristics.Palliative Med. 1995; 9: 27-35Crossref PubMed Scopus (167) Google Scholar]. A specific section of the interview dealt with the information received by the patients about cancer diagnosis and the related poor prognosis of the disease itself. More specifically, the caregiver was asked:(1) When had the cancer been diagnosed?(2) Did someone tell the patient he/she had cancer?If yes: Who told the patient? When did they tell him/her?If not: In your opinion, did the patient know he/she had a cancer?(3) Did someone inform the patient about the poor prognosis of his/her disease?If yes: Who told the patient? When did they tell him/her?If not: In your opinion, did the patient know the prognosis was poor?During specific training settings, the interviewers were instructed to specify the caregiver two points:(1) Diagnosis disclosure meant that the physician (or another person) had used words such as 'cancer', 'malignant tumor', 'neoplasm'.(2) The poor prognosis referred to the impossibility for the patient to obtain a radical cure (a recovery) for the disease.For the aim of this study, we considered as informed those patients who, although not formally informed by the physicians, found the information about diagnosis and/or prognosis by themselves (e.g. by reading the medical records).The Ethical Committee of the National Cancer Institute of Genoa approved the study protocol. A notification of the study and its procedures was sent to the Italian Data Protection Commission, according to the Italian law on the use and processing of health data.statistical methodAll analyses were performed using SUDAAN version 9.0.1 (Research Triangle Institute, Research Triangle Park, NC) on the sample of 1271 interviews. Sampling weights were introduced to obtain unbiased weighted point estimates and standard errors (SE) of the target population. Weights were introduced to account for the different probability a deceased had to be selected in each of the four geographical areas (since the LHD were sampled disproportionately in each area), and for the different proportion of valid information obtained in each of the 30 LHD.The chi-square test for heterogeneity was used to examine the distribution of disclosure in the four Italian geographical areas. Two multivariate logistic regression models were conducted to examine the associations between selected patients and caregivers' characteristics and the disclosure of cancer diagnosis (first model) and poor prognosis (second model) to the patients.resultThe characteristics of the study sample reflect those of Italian people dying of cancer (Table 1). Most of the cancer deaths included in the study were at least 70 years old at death (67%), 57% were males, 67% had completed only primary schools and 60% were married. Tumors from digestive, respiratory or genitourinary system accounted for 72% of all cancer deaths. A remarkable observation from our sample was that in one-third of the patients, cancer was diagnosed within 6 months before death. The main caregiver, in most cases, was a relative (the spouse or a child accounts for 77%), in 70% of the cases a female, and with a higher level of education compared with the patients (31% of the caregivers completed only primary schools). The low proportion (3%; 95% CI 1.9–4.1) of patients followed by a health professional (usually the GP or a member of the staff in a residential structure), refers to patients without any non-professional support.Table 1Characteristics of the study sampleActual sample (n = 1271)Weighted samplen%%95% CIThe patientAge at death (years) 18–59150121210–14 60–69265212118–25 70–79446353532–38 80+410323229–35Gender Males713565754–61 Females558444339–46Education (years) ≤5833666762–72 6–8228181715–20 9–13176141311–17 >1332332–4 Unknown2Marital status Married743596057–64 Single519414036–43 Unknown9The disease Primary tumor Head and neck28221–3 Digestive system465373634–39 Respiratory system266212219–25 Breast12510108–12 Genitourinary system186151513–17 Haematological92776–10 Others and unspecified109987–10Time since diagnosis (months) 1–3250201917–22 4–6174141412–16 7–12221181915–22 13–36320262825–30 >36267222119–24 Unknown39The caregiverRelationship Spouse382303127–35 Siblings69554–7 Child586464642–50 Others non-professionals194151513–17 Health professionals40332–4Age (years) 18–39195161714–20 40–49282242421–27 50–59288242421–27 60–69253212118–24 70+177151513–18 Unknown76GenderMales387303127–34Females884706966–73Education (years) ≤5345293127–34 6–8250212118–25 9–13444383633–39 >13140121210–15 Unknown92The geographical area North-west604483121–43 North-east209162115–30 Center241192317–31 South and islands217172518–34 Open table in a new tab According to what was reported by caregivers (Table 2), it can be estimated that only 37% (95% CI 34–40) of people dying of cancer had been told they had cancer, and an absolute minority (13%; 95% CI 10–15) had received information about the poor prognosis of their disease. Conversely, a consistent proportion of patients, although non-informed, knew the nature (29% of the total; 95% CI 27–32) and the poor prognosis (50% of the total; 95% CI 46–54) of their disease.Table 2Disclosure of cancer diagnosis and of poor prognosis among the Italian patients deceased for cancerAll ItalyNorth-westNorth-eastCentreSouth and IslesActual sample1271604209241217Cancer deaths155 44672 04927 04829 37926 970Column %aAll percentages (95% CI) are weighted. (95% CI)Column %aAll percentages (95% CI) are weighted. (95% CI)Column %aAll percentages (95% CI) are weighted. (95% CI)Column %aAll percentages (95% CI) are weighted. (95% CI)Column %aAll percentages (95% CI) are weighted. (95% CI)Diagnosis of cancerbEstimates based on 97% the interviews with the caregivers (n = 1237). Informed37 (34–40)43 (37–49)43 (38–49)33 (30–37)29 (21–37) Not informed but 'they knew'29 (27–32)26 (21–32)24 (20–28)30 (25–36)38 (32–44) Not informed and 'they did not know'26 (24–29)25 (21–30)27 (20–34)30 (24–36)23 (19–27) Not informed, unknown if 'they knew'7 (6–10)6 (3–9)6 (4–9)7 (5–11)10 (6–18)P < 0.001 (among the four geographical areas)Poor prognosiscEstimates based on 95% of the interviews with the caregivers (n = 1213). Informed13 (10–15)15 (11–20)14 (10–19)13 (9–20)7 (4–12) Not informed but 'they knew'50 (46–54)46 (41–51)45 (37–55)49 (40–59)60 (56–63) Not informed and 'they did not know'27 (24–30)31 (26–35)28 (23–34)26 (18–35)23 (17–31) Not informed, unknown if 'they knew'10 (8–14)8 (6–11)13 (7–23)12 (8–17)10 (5–18)P = 0.006 (among the four geographical areas)a All percentages (95% CI) are weighted.b Estimates based on 97% the interviews with the caregivers (n = 1237).c Estimates based on 95% of the interviews with the caregivers (n = 1213). Open table in a new tab The proportion of informed patients was significantly different among the four geographical areas of Italy (Table 2), both for diagnosis (P < 0.001) and prognosis (P = 0.006), with the lowest proportion of informed patients living in southern Italy (only 29% and 7% were informed about diagnosis and prognosis, respectively). Among the 30 sampled LHD, the proportion of informed patients about diagnosis ranged between 6% and 63%. The proportion of informed patients about poor prognosis ranged between 0% and 48%.The source of information (Table 3) was, in most cases, a physician that disclosed the diagnosis of cancer for 80% and the poor prognosis for 78%. A very small proportion of other health professionals (nurses, social workers and psychologists) disclosed cancer diagnosis (0.5%) or poor prognosis (0.9%). Relatives (usually a child) and friends were the source of information for 14% and 16% of the patients as far as cancer diagnosis and poor prognosis, respectively. A small, but non-negligible proportion of patients found the information about the nature of the disease (6%; 95% CI 4–9) and its prognosis (5%; 95% CI 2–10) by themselves (Table 3). According to what is reported by the caregivers, this happened through different modalities: by reading the medical reports or the case sheet, listening to the physicians speaking about his/her clinical situation and during chemotherapy.Table 3Source of information for disclosure of cancer diagnosis and for poor prognosisCancer diagnosisPoor prognosisActual sampleaSubsample that received information about cancer diagnosis (n = 481) or about the poor prognosis (n = 162).481162Cancer deaths (95% CI)57 826 (53 473–62 334)19 431 (16 011–23 472)Column % 95% CIbWeighted column percentages (95% CI) estimated on 97% of the interviews with the caregivers.Column % 95% CIcWeighted column percentages (95% CI) estimated on 93% of the interviews with the caregivers.Oncologist1511–202314–36Surgeon117–1552–10Hospital specialist2821–363122–43General practitioner118–1531–12Physician not specified1611–211610–23Other health professional0.50.1–210–3Spouse31–521–9Child74–1063–12Other relative or friend53–784–17By oneself64–952–10a Subsample that received information about cancer diagnosis (n = 481) or about the poor prognosis (n = 162).b Weighted column percentages (95% CI) estimated on 97% of the interviews with the caregivers.c Weighted column percentages (95% CI) estimated on 93% of the interviews with the caregivers. Open table in a new tab The disclosure of cancer diagnosis took place for 81% of the informed patients (95% CI 77–84) during the first month after cancer diagnosis.Two multivariate logistic models were fitted to the same data, using as dependent variables the disclosure of cancer diagnosis (first model) and the disclosure of poor prognosis (second model). The results (Table 4) are reported only for variables with a P < 0.10 in at least one of the two models.Table 4Factors associated with disclosure of diagnosis and of the poor prognosisDisclosure of cancer diagnosisDisclosure of the poor prognosisUnadjustedAdjustedUnadjustedAdjusted%OR95% CIaAdjusted OR (95% CI) from a multivariate logistic model with all the characteristics of the patient and of the caregiver as covariates. Only variables with a P < 0.10 for at least one of the two models are reported.%OR95% CIaAdjusted OR (95% CI) from a multivariate logistic model with all the characteristics of the patient and of the caregiver as covariates. Only variables with a P < 0.10 for at least one of the two models are reported.Age at death (years) 18–597111.36.3–20.2283.31.6–6.9 60–69515.73.2–10.2161.70.8–3.4 70–79342.81.9–4.1101.30.7–2.3 80+19ref.8ref.(P < 0.01)(P = 0.02)Education (years) ≤530ref.10ref. 6–8481.61.2–2.2191.71.0–3.0 9–13562.41.4–4.0161.20.6–2.3 >13664.21.7–10.5252.20.8–6.0(P < 0.01)(P = 0.18)Primary tumor Respiratory system42ref.11ref. Head and neck744.71.2–19.3374.91.1–22.3 Digestive system260.60.4–1.0101.20.6–2.5 Breast682.61.4–5.0242.10.7–6.7 Genitourinary system390.90.5–1.6121.10.4–2.7 Haematological360.90.4–1.980.70.2–2.3 Others and unspecified280.60.3–1.2131.60.7–3.9(P < 0.01)(P = 0.28)Time since diagnosis (months) 1–311ref.3ref. 4–6252.81.7–4.772.20.9–5.7 7–12343.42.1–5.7123.61.1–11.4 13–36508.04.8–13.2186.42.3–18.1 >365713.07.7–21.9196.72.3–19.8(P < 0.01)(P < 0.01)The caregiver Spouse50ref.20ref. Siblings430.60.3–1.3130.40.2–0.9 Child310.80.6–1.080.50.3–0.8 Others non-professionals300.80.5–1.290.60.3–1.3 Health professionals290.60.2–2.1211.50.4–5.4(P = 0.34)(P = 0.03)Geographical area North-west46ref.17ref. North-east461.00.6–1.7160.90.5–1.5 Center360.60.4–1.0150.90.4–1.9 South and islands320.30.2–0.580.40.2–0.7(P < 0.01)(P = 0.02)a Adjusted OR (95% CI) from a multivariate logistic model with all the characteristics of the patient and of the caregiver as covariates. Only variables with a P < 0.10 for at least one of the two models are reported. Open table in a new tab The probability of being informed about diagnosis significantly decreased with increasing age at death (P < 0.01) and was higher for patients who died of head and neck (OR = 4.7; 95% CI 1.2–19.3) or breast cancer (OR = 2.6; 95% CI 1.4–5.0) compared with referents (i.e. those who died of respiratory tract cancers). The probability of being informed increased significantly (P < 0.001) with the patient's increasing education level. A linear trend was also observed with the interval between diagnosis and death: the longer the interval, the higher the patients' probability of receiving information about diagnosis. No significant relationship was observed with the type of caregiver (P = 0.34).The probability of being informed about the poor prognosis followed the same relation observed for age and the disclosure of cancer diagnosis (P = 0.02) and the time between diagnosis and death (P = 0.03). The association was not statistically significant for education (P = 0.18) and primary tumor (P = 0.28). Conversely, the probability of being informed about prognosis was lower (P = 0.03) when the caregiver was the patient's spouse.Finally, in both models, after adjusting for all variables, differences between the four geographical areas remained strong, with the lowest probability of being informed about diagnosis and prognosis in people who died in southern Italy (OR = 0.3, 95% CI 0.2–0.5; OR = 0.4, 95% CI 0.2–0.7, respectively).discussioThe results of this survey show that in Italy the practice of withholding the truth from cancer patients is still prevalent among physicians. According to what is reported by bereaved caregivers, less than 40% of Italians who died of cancer had been told they had cancer and less than 15% had received information about the poor prognosis of their disease. Moreover, not even a trend toward a truth-telling practice can be observed by comparing these findings with the scanty literature of the last 20 years on the subject. The proportion of informed cancer patients, in surveys performed in Italy between 1996 and 2002, ranged between 36% and 64% for diagnosis [6.Pronzato P. Bertelli G. Losardo P. Landucci M. What do advanced cancer patients know of their disease?.Support Care Cancer. 1994; 2: 242-244Crossref PubMed Scopus (122) Google Scholar, 13.Mosconi P. Meyerowitz B.E. Liberati M.C. Liberati A. Disclosure of breast cancer diagnosis: patients and physician reports.Ann Oncol. 1991; 2: 273-280Abstract Full Text PDF PubMed Scopus (85) Google Scholar, 15.Veronesi A. Busato C. Annunziata M.A. et al.Prospective analysis of the information level of Italian cancer patients.Eur J Cancer. 1995; 31: 425-426Abstract Full Text PDF Scopus (11) Google Scholar, 17.Caruso A. Di Francesco B. Pugliese P. et al.Information and awareness of diagnosis and progression of cancer in adult and elderly cancer patients.Tumori. 2000; 86: 199-203Crossref PubMed Scopus (52) Google Scholar, 21.GIVIO. What doctors tell patients with breast cancer about diagnosis and treatment. Findings from a study in general hospitals.Brit J Cancer. 1986; 54: 319-326Crossref PubMed Scopus (50) Google Scholar] and between 0% and 26% for prognosis [6.Pronzato P. Bertelli G. Losardo P. Landucci M. What do advanced cancer patients know of their disease?.Support Care Cancer. 1994; 2: 242-244Crossref PubMed Scopus (122) Google Scholar, 16.The Italian Group for the Evaluation of Outcomes in Oncology (IGEO) Awareness of disease among Italian cancer patients: is there a need for further improvement in patient information?.Ann Oncol. 1999; 10: 1095-1100Abstract Full Text PDF PubMed Scopus (34) Google Scholar].These findings are surprising, because some significant changes, interpreted as indicators of a shift towards a truth-telling attitude of the medical profession, have been documented in Italy [22.Surbone A. Ritossa C. Spagnolo A.G. Evolution of truth-telling attitudes and practices in Italy.Crit Rev Oncol Hemat. 2004; 52: 165-172Crossref PubMed Scopus (73) Google Scholar]. For many years both the law and the Medical Deontology Code have strictly required an informed consent for all medical acts, and assert that information must be given to the patient rather than to the family. Education and training programs for oncologists, as well as palliative care programs were implemented throughout the country.This medical malpractice of withholding relevant information from the patient is based on two major underlying assumptions. First, it has been suggested that patients living in countries traditionally centered on family and community values are more inclined to accept a paternalistic relationship [3.Thomsen O. Wulff H.R. Martin A. Singer P. What do gastroenterologists in Europe tell cancer patients?.Lancet. 1993; 341: 473-476Abstract PubMed Scopus (173) Google Scholar]. As a consequence the doctors' practice of concealing the truth about diagnosis and prognosis would reflect the attitudes of their patients. This assumption was challenged by well-conducted studies [6.Pronzato P. Bertelli G. Losardo P. Landucci M. What do advanced cancer patients know of their disease?.Support Care Cancer. 1994; 2: 242-244Crossref PubMed Scopus (122) Google Scholar, 7.Meredith C. Symonds P. Webster L. et al.Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.Brit Med J. 1996; 313: 724-726Crossref PubMed Scopus (456) Google Scholar, 8.Pimentel F.L. Ferreira J.S. Real M.V. et al.Quantity and quality of information desired by Portuguese cancer patients.Support Care Cancer. 1999; 7: 407-412Crossref PubMed Scopus (43) Google Scholar, 9.Shaun O.T. Noone I. Pillay I. Telling the truth a