Italian onco-haematological patients' preferences in bad news communication: a preliminary investigation

Abstract

Background: The manner in which bad news is communicated in oncological contexts can affect patients' engagement, their coping strategies and therapeutic compliance. Although this topic has been broadly investigated since the nineties, to the best of our knowledge, little has been written about Italian patients' experiences and preferences concerning what the oncologists should disclose and how they should intimate patients about their health conditions in different stages of oncological disease.

Methods: In an attempt to fill this gap, an online self-report questionnaire was administered to a sample of Italian onco-haematological patients. Data were analysed both qualitatively (by a content analysis) and quantitatively (by descriptive analysis and Generalized Linear Mixed Model).

Results: While the majority of patients elected to know the truth during their clinical course, a polarisation between those arguing that the truth be fully disclosed and those claiming that the truth be communicated in a personalised way was observed at the attitude level. Among demographic variables accounted for, age seems to most affect patients' preferences. Indeed, younger Italian patients decidedly reject concealment of the truth, even when justified by the beneficence principle. This result could be a reaction to some protective and paternalistic behaviours, but it could even reflect a relation according to which the more the age increases the more the fear of knowing rises, or an intergenerational change due to different ways of accessing the information. The qualitative analysis of the final open-ended question revealed three main sources of problems in doctor-patient encounters: scarcity of time, absence of empathy and use of not-understandable language that makes it difficult for patients to assume a more active role.

Conclusions: The results of the present study, which represents a preliminary step in the subject investigation, will be deployed for the construction and validation of a more sophisticated questionnaire. Better awareness of the Italian onco-haematological patients' preferences concerning bad news communication and truth-telling could be useful in adopting more suitable medical practices and improving doctor-patient relationships.

Keywords: Bad news; Onco-haematological disease; Patients’ experiences; Patients’ preferences; Truth.

Fig. 1

a Proportion of responses and 95% confidence intervals related to interaction between item 5 levels (The first diagnosis was communicated by department head, ward doctor, family doctor, doctor undergoing specialised training, other physician, other healthcare worker/nurse, or relative) and levels of education: Junior high school, Senior high school, Graduate and doctorate. b Proportion of responses and 95% confidence intervals related to interaction between item 5 levels and age groups: 18–30, 31–40, 41–50, 51–60, > 60. (c) Proportion of responses and 95% confidence intervals related to the interaction between item 6 levels (The truth about diagnosis must be told always and in full or always, but in a personalised way, or never, or other) and levels of education: Junior high school, Senior high school, Graduate and doctorate

Fig. 2

a Proportion of responses and 95% confidence intervals related to item 7 levels (The truth about prognosis must be told always and in full; always, but in a personalised way; never; other). b Proportion of responses and 95% confidence intervals related to the interaction between item 8 levels (During the first encounter with the doctor, you were alone or accompanied by one or more people) and gender: Female, Male. c Proportion of responses and 95% confidence intervals related to the interaction between item 9 levels (During the subsequent communication encounter with the doctor you were alone or accompanied by one or more people) and age groups: 18–30, 31–40, 41–50, 51–60, > 60

Fig. 3

a Proportion of responses and 95% confidence intervals related to the interaction between item 9 levels (During the subsequent communication encounter with the doctor you were alone or accompanied by one or more people) and levels of education: Junior high school, Senior high school, Graduate and doctorate. b Proportion of responses and 95% confidence intervals related to the interaction between item 10 levels (Lying to the patient is legitimate or not legitimate) and age groups: 18–30, 31–40, 41–50, 51–60, > 60. c Proportion of responses and 95% confidence intervals related to the interaction between item 11 levels (The doctor who omits a part of the truth to avoid pain to the patient lies or does not lie) and age groups: 18–30, 31–40, 41–50, 51–60, > 60

Fig. 4

a Proportion of responses and 95% confidence intervals related to the interaction between item 11 levels (The doctor who omits a part of the truth to avoid pain to the patient lies or does not lie) and levels of education: Junior high school, Senior high school, Graduate and doctorate. b Proportion of responses and 95% confidence intervals related to the interaction between item 12 levels (During your illness, you have preferred always to know the truth or not always to know the truth) and age groups: 18–30, 31–40, 41–50, 51–60, > 60. c Proportion of responses and 95% confidence intervals related to interaction between item 12 levels and levels of education: Junior high school, Senior high school, Graduate and doctorate

Fig. 5

a Proportion of responses and 95% confidence intervals related to the interaction between item 16 levels (During care pathway as a patient you have been active and collaborative or passive and non-collaborative or sometimes active and collaborative and sometimes passive and non-collaborative) and age groups: 18–30, 31–40, 41–50, 51–60, > 60. b Proportion of responses and 95% confidence intervals related to the interaction between item 16 levels and gender: Female, Male. c Proportion of responses and 95% confidence intervals related to the interaction between item 16 levels and levels of education: Junior high school, Senior high school, Graduate and doctorate