Abstract

This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.

Key words
Aged; Palliative care; Information; Prognosis; Brazil

Introduction

With most people facing terminal illness before death¹1 Hall S, Petkova H, Tsouros AD, Costantini M, Higginson IJ. Palliative Care for Older People: Better Practices. Copenhagen: WHO Regional Office for Europe; 2011.^,22 Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013;12(1):7., health professionals frequently have to deliver bad news about a diagnosis and prognosis to patients³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.

4 Sleeman K. End-of-life communication: let's talk about death. J R Coll Physicians Edinb 2013;43(3):197-199.^-55 Alelwani SM, Ahmed YA. Medical training for communication of bad news: A literature review. J Educ Health Promot 2014;3:51.. However, disclosing a terminal diagnosis remains a difficult task for many health professionals³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,55 Alelwani SM, Ahmed YA. Medical training for communication of bad news: A literature review. J Educ Health Promot 2014;3:51.^,66 Barnett MM, Fisher JD, Cooke H, James PR, Dale J. Breaking bad news: consultants' experience, previous education and views on educational format and timing. Med Educ 2007;41(10):947-956., frequently leading to partial or total emission of information on the prognosis or meaning that the family is given the information rather than the patient⁷7 Fumis RRL, De Camargo B, Del Giglio A. Physician, patient and family attitudes regarding information on prognosis: A Brazilian survey. Ann Oncol 2012;23(1):205-211.

8 Mitchell AJ. Reluctance to disclose difficult diagnoses: A narrative review comparing communication by psychiatrists and oncologists. Support Care Cancer 2007;15(7):819-828.^-99 Repetto L, Piselli P, Raffaele M, Locatelli C. Communicating cancer diagnosis and prognosis: When the target is the elderly patient-a GIOGer study. Eur J Cancer 2009;45(3):374-383.. The literature shows that doctors may be reluctant to give patients prognostic information for a number of reasons, including: lack of formal preparation for communicating bad news, difficulty accepting that they are unable to offer a cure to the patient, fear of the patient’s/family’s reaction, and uncertainty about prognosis³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,44 Sleeman K. End-of-life communication: let's talk about death. J R Coll Physicians Edinb 2013;43(3):197-199.^,1010 Wenrich MD, Curtis JR, Shannon SE, Carline JD, Ambrozy DM, Ramsey PG. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001;161(6):868-874.^,1111 Shahidi J. Not telling the truth: circumstances leading to concealment of diagnosis and prognosis from cancer patients. Eur J Cancer Care (Engl) 2010;19(5):589-593..

However, information is vital for those who are coping with serious illness and knowing patient preferences for information enables professionals to respond adequately to the situation³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,1010 Wenrich MD, Curtis JR, Shannon SE, Carline JD, Ambrozy DM, Ramsey PG. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001;161(6):868-874.^,1212 De Vleminck A, Pardon K, Roelands M, Houttekier D, Van den Block L, Vander Stichele R, Deliens L. Information preferences of the general population when faced with life-limiting illness. Eur J Public Health 2015;25(3):532-538.. Clear information can help patients and their families make treatment decisions and define realistic goals, facilitate end-of-life planning, and increase rather than decrease hope⁴4 Sleeman K. End-of-life communication: let's talk about death. J R Coll Physicians Edinb 2013;43(3):197-199.^,1313 Cartwright LA, Dumenci L, Siminoff LA, Matsuyama RK. Cancer patients' understanding of prognostic information. J Cancer Educ 2014;29(2):311-317.. Moreover, when patients receive less information end-of-life care is less likely to reflect their preferences¹⁴14 Elkin EB, Kim SHM, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: Elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol 2007;25(33):5275-5280. and more likely to be aggressive⁴4 Sleeman K. End-of-life communication: let's talk about death. J R Coll Physicians Edinb 2013;43(3):197-199.^,1515 Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL, Earle CC, Weeks JC. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol 2012;30(35):4387-4395..

Evidence also suggests that, if asked, most people from different cultures would prefer to always be informed about diagnosis, while a smaller, but still substantial, proportion would want to receive detailed information about the prognosis; although this proportion diminishes in the case of a poor prognosis³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,77 Fumis RRL, De Camargo B, Del Giglio A. Physician, patient and family attitudes regarding information on prognosis: A Brazilian survey. Ann Oncol 2012;23(1):205-211.^,88 Mitchell AJ. Reluctance to disclose difficult diagnoses: A narrative review comparing communication by psychiatrists and oncologists. Support Care Cancer 2007;15(7):819-828.^,1212 De Vleminck A, Pardon K, Roelands M, Houttekier D, Van den Block L, Vander Stichele R, Deliens L. Information preferences of the general population when faced with life-limiting illness. Eur J Public Health 2015;25(3):532-538.^,1616 Hagerty RG. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol 2005;16(7):1005-1053.

17 Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH. A systematic review of prognostic/end-of-Life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007;34(1):81-93.^-1818 Tang ST, Lee S-YC. Cancer diagnosis and prognosis in Taiwan: Patient preferences versus experiences. Psychooncology 2004;13(1):1-13.. A population-based study conducted in Europe found that 73.9% of respondents showed a preference to always know if they had limited time left in a scenario of serious illness such as cancer with less than a year to live³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.. In addition, 81.3% would always want to be informed about symptoms and problems, and 89.5% would always want to be informed of their care options (services available, places where you could be looked after, treatments and medication)³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.. Another study with patients in two hospitals for cancer in São Paulo and medical oncologists working throughout Brazil showed that 92% of patients believed that all patients should know their poor prognosis⁷7 Fumis RRL, De Camargo B, Del Giglio A. Physician, patient and family attitudes regarding information on prognosis: A Brazilian survey. Ann Oncol 2012;23(1):205-211.. The same study also showed that some doctors and family members were reluctant to give information to patients. The data shows that 18.3% of doctors and 20.8% of family members believed that not all patients should know their poor prognosis, compared to 8% of patients⁷7 Fumis RRL, De Camargo B, Del Giglio A. Physician, patient and family attitudes regarding information on prognosis: A Brazilian survey. Ann Oncol 2012;23(1):205-211.. These findings show that some doctors adopt a paternalistic approach to patient care and that family members may create barriers to informing patients about a poor prognosis⁷7 Fumis RRL, De Camargo B, Del Giglio A. Physician, patient and family attitudes regarding information on prognosis: A Brazilian survey. Ann Oncol 2012;23(1):205-211..

Older people’s preferences for prognostic information are particularly important, given that it is this group that have to deal with terminal illness most and face more complex decisions¹⁹19 Price EL, Bereknyei S, Kuby A, Levinson W, Braddock CH. New elements for informed decision making: A qualitative study of older adults' views. Patient Educ Couns 2012;86(3):335-341.^,2020 World Health Organization (WHO), World Palliative Care Alliance. Global Atlas of Palliative Care at the End of Life. Geneva: WHO; 2014.. Furthermore, advanced age is a risk factor for receiving less prognostic information among cancer patients⁹9 Repetto L, Piselli P, Raffaele M, Locatelli C. Communicating cancer diagnosis and prognosis: When the target is the elderly patient-a GIOGer study. Eur J Cancer 2009;45(3):374-383.^,2121 Paillaud E, Canoui-Poitrine F, Varnier G, Anfasi-Ebadi N, Guery E, Saint-Jean O, Gisselbrecht M, Aparicio T, Bastuji-Garin S, Laurent M, Caillet P. Preferences about information and decision-making among older patients with and without cancer. Age Ageing 2017;46(4):665-671.. Previous studies have shown that older cancer patients²¹21 Paillaud E, Canoui-Poitrine F, Varnier G, Anfasi-Ebadi N, Guery E, Saint-Jean O, Gisselbrecht M, Aparicio T, Bastuji-Garin S, Laurent M, Caillet P. Preferences about information and decision-making among older patients with and without cancer. Age Ageing 2017;46(4):665-671.

22 Ajaj A, Singh MP, Abdulla AJ. Should elderly patients be told they have cancer? Questionnaire survey of older people. BMJ 2001;323(7322):1160.^-2323 Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: Results from a large study in UK cancer centres. Br J Cancer 2001;84(1):48-51. generally want to be fully informed within a scenario of life-threatening illness. However, other studies showed that the majority of older cancer patients preferred not to be informed about expected survival¹⁴14 Elkin EB, Kim SHM, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: Elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol 2007;25(33):5275-5280., did not want complete information on their disease²⁴24 Giacalone A, Blandino M, Talamini R, Bortolus R, Spazzapan S, Valentini M, Tirelli U. What elderly cancer patients want to know? Differences among elderly and young patients. Psychooncology 2007;16(4):365-370., preferred to receive more information about the diagnosis than the prognosis¹⁴14 Elkin EB, Kim SHM, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: Elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol 2007;25(33):5275-5280.^,2525 Fried TR, Bradley EH, O'Leary J. Prognosis communication in serious illness: Perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc 2003;51(10):1398-1403.^,2626 Chouliara Z. Perceptions of older people with cancer of information, decision making and treatment: a systematic review of selected literature. Ann Oncol 2004;15(11):1596-1602., and wanted to receive less information than younger patients¹⁴14 Elkin EB, Kim SHM, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: Elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol 2007;25(33):5275-5280.^,2424 Giacalone A, Blandino M, Talamini R, Bortolus R, Spazzapan S, Valentini M, Tirelli U. What elderly cancer patients want to know? Differences among elderly and young patients. Psychooncology 2007;16(4):365-370.^,2727 Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med 1980;92(6):832-836.. A population-based study carried out in Europe reported that people aged under 70 were more likely to want to know if they had limited time left³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305., while a study conducted in Belgium showed that younger participants (25-34, 35-44 and 45-54 years) were more likely to want to be fully informed about their disease¹²12 De Vleminck A, Pardon K, Roelands M, Houttekier D, Van den Block L, Vander Stichele R, Deliens L. Information preferences of the general population when faced with life-limiting illness. Eur J Public Health 2015;25(3):532-538..

Most studies investigating information preferences have focused on cancer patients or the terminally ill¹²12 De Vleminck A, Pardon K, Roelands M, Houttekier D, Van den Block L, Vander Stichele R, Deliens L. Information preferences of the general population when faced with life-limiting illness. Eur J Public Health 2015;25(3):532-538.. Population-based studies have also explored end-of-life care preferences, including preferences for information, to inform policy making and public education and health promotion programs to promote awareness of these matters in the general population and health professionals¹²12 De Vleminck A, Pardon K, Roelands M, Houttekier D, Van den Block L, Vander Stichele R, Deliens L. Information preferences of the general population when faced with life-limiting illness. Eur J Public Health 2015;25(3):532-538.^,2828 Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making: A national study of public preferences. J Gen Intern Med 2005;20(6):531-535.. In Brazil, despite advances in palliative care in recent years, little is known about end-of-life care preferences, including preferences for prognostic information. It is therefore vital to conduct research into people’s preferences to raise awareness among health professionals of the importance of respecting patients’ wishes about end-of-life care.

The objective of this study was to determine the preferences of community-dwelling older people for information on limited time left, symptoms and problems, and available care options within a scenario of serious illness with less than a year to live, and examine the influence of sociodemographic factors on preference to always be informed about limited time left.

Methods

A cross-sectional study was conducted between February and July 2015. The study sample comprised individuals of both sexes aged over 60 years living in Belo Horizonte, Brazil. The sample size was calculated based on the population of older people in Belo Horizonte reported by the 2010 Census conducted by the Brazilian Institute of Geography and Statistics (299,177 people aged ≥60). Sample size was determined using the Krejcie and Morgan table²⁹29 Krejcie RV, Morgan DW. Determining Sample Size for Research Activities. Educ Psychol Meas 1970; 30(3):607-610. adopting a 95% confidence level, a margin of error of 5%, and considering a more conservative scenario (p = 0.5), it resulted in a representative sample of approximately 400 individuals. Subsamples were calculated based on the age (60-69 years; 70-79 years; ≥ 80 years) and gender distribution of older people in Belo Horizonte³⁰30 Jorge R, Calanzani N, Freitas A, Nunes R, Sousa L. Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil. Ciên Saude Colet 2019;24(8):3003-3014.. The number of people in each stratum was calculated using proportionate stratified random sampling to ensure that the sample was directly proportional to the sample universe.

The participants were selected from the Reference Center for Older People (CRPI, acronym in Portuguese) and 10 older people’s groups from reference centers for social services (CRAS, acronym in Portuguese), managed by the city council’s department of social services (SMAAS, acronym in Portuguese). The SMAAS helped select ten different groups covering all the city’s regions (Barreiro, Centro-Sul, Leste, Nordeste, Noroeste, Norte, Oeste, Pampulha, and Venda Nova). These sites were chosen for data collection due to the non-institutionalized profile of the participants. The study was approved by the director of CRPI and secretary of the SMAAS.

The study was presented to potential participants by the first author or professionals working in the CRPI/groups over the microphone or, when the group was smaller, personally. The questionnaires were administered via an individual interview conducted by the first author, who received training from the team that trained the interviewers who administered the questionnaire in Europe. The inclusion criteria were as follows: aged ≥ 60 years, residing in Belo Horizonte, and capable of providing informed consent. People who were disoriented in time and place were excluded based on the indication of the professionals working in the CRPI/groups.

The questionnaire was developed as part of the project PRISMA (Reflecting the Positive diveRsities of European prIorities for reSearch and Measurement in end of life cAre), funded by the European Commission’s Seventh Framework Programme³¹31 Ferreira PL, Antunes B, Pinto AB, Gomes B. Cuidados de fim de vida: Portugal no projeto europeu PRISMA. Rev Port Saude Publica 2012;30(1):62-70.. The questionnaire analyzes end-of-life care preferences and priorities within a scenario of serious illness such as cancer with less than a year to live. It has two sections: the first consists of 10 questions on end-of-life care preferences and priorities and the second includes items on sociodemographics and experience with illness, death and dying³²32 Jorge R, Sousa L, Nunes R. Preferências e prioridades para os cuidados de fim de vida de pessoas idosas: adaptação cultural para o Brasil. Geriatr Gerontol Aging 2016;10(2):101-111..

This study used the version adapted for use in Brazil³²32 Jorge R, Sousa L, Nunes R. Preferências e prioridades para os cuidados de fim de vida de pessoas idosas: adaptação cultural para o Brasil. Geriatr Gerontol Aging 2016;10(2):101-111., which was modified based on the recommendations of Brazilian professionals with vast experience in care for older adults and palliative care³²32 Jorge R, Sousa L, Nunes R. Preferências e prioridades para os cuidados de fim de vida de pessoas idosas: adaptação cultural para o Brasil. Geriatr Gerontol Aging 2016;10(2):101-111.. In the Brazilian version we increased the range of options of serious illness (not just cancer), widening the life-threatening chronic diseases group to include heart disease, chronic obstructive pulmonary disease, kidney failure, and Alzheimer’s disease. Furthermore, in Brazil the interviews were face-to-face, as opposed to Europe³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305., where the questionnaire was administered by telephone, and Kenya³³33 Downing J, Gikaara N, Gomes B, Daveson BA, Higginson IJ, Harding R. Public opinion on preferences and priorities for end-of-life care in sub-Saharan Africa: piloting a novel method of street surveying. BMJ Support Palliat Care 2012;2(1):72-74., where a street survey was conducted.

The three survey questions reported in this paper were: If you had a serious illness, and were likely to have less than one year to live, (i) Would you like to be informed that you had limited time left?; (ii) Would you like to be informed about what symptoms and problems you were likely to experience?; (iii) Would you like to be informed about the options available for care and how they might affect you? These options might be services available, places where you could be looked after, treatments and medication. Answer options were: Yes, always, Yes, but only if you ask about it, “No and You don’t know.

The data was processed using Microsoft Excel 2010^® and SPSS Statistics 22.0^®. Normality was tested using the Kolmogorov-Smirnov test (K-S test statistic). For non-normal distributions we used non-parametric tests for comparing the medians of two independent samples (Mann-Whitney, MW test statistic) and for comparing the medians of two or more independent samples (Kruskal-Wallis, KW test statistic). When the results of the Kruskal-Wallis test showed significant differences between the groups, multiple comparisons between the group pairs were performed to detect the groups that showed the differences. Non-normal continuous variables were expressed as medians (Med) and first and third quartiles ([Q₁-Q₃]).

The categorical variables were described using frequencies N (%). Logistic regression was performed to identify the factors associated with preference to always be informed about limited time left. Bivariate analysis was performed to test the association between the dependent variables (always be informed versus other response options) and independent variables (gender, age bands, education level, marital status, religion, ethnicity, activities in the last seven days, financial hardship, number of adults living in the respondent’s home, number of children living in the respondent’s home, general health, preferred place of death, least preferred place of death, and experience with illness, death and dying). Multivariate logistic regression was performed to control for confounding variables, including co-variables that showed a statistically significant association with the dependent variables (always be informed versus other response options) in the simple logistic regression model. A significance level of p≤0.05 was adopted for all analyses.

This study was approved by the Ethics Committee of the Department of Social Sciences and Health of the Faculty of Medicine of the University of Porto/ Portugal (PCEDCSS-FMUP 15/2014) and by the Research Ethics Committee of the Municipal Department of Health of Belo Horizonte (SMSA-BH). The purpose of the research was explained to participants. They were given time to ask questions and clarify any potential concerns. After answering these and clarifying any potential concerns, all the participants signed a consent form.

Results

The majority of the respondents were retired (80.5%), reported that they were coping on present income (51.7%), and Catholic (66.8%). Over half the sample (53.5%) self-reported good general health, 19% had been diagnosed with a serious illness in the last five years, and 66% had cared for close relative/friend in last months of life (Table 1).

Preferences for information on time left, likely symptoms and problems, and care options available

The data (Table 2) show that most participants (74%) would always want to be informed about limited time left within a scenario of serious illness with less than a year to live. When we combined the options [“yes, always” and “yes, but only if you ask about it”], we observed that 78.5% of the participants would always want to be informed. “No” was the second most chosen option (20.5%).

The preference to always want to be informed about time left (74%) was lower than that of to always want to be informed about symptoms and problems (89.3%) and to always want to be informed about available care options (services available, places where you could be looked after, treatments and medication) (96.3%) (Table 2). Preference to always to be informed about symptoms and problems and available care options was greater in men than in women (93% and 86.7%, respectively, and 96.8% and 95.8%, respectively).

The majority of both men and women would always want to be informed about limited time left. Preference was greater among men (83%) than in women (68%) across all age bands (Table 2). The results of the logistic regression indicate that being a woman is a significant protective factor for always wanting to be informed about limited time left (OR=0.436: 95% CI: 0.266-0.714) (Table 3). In addition, choosing the home of a close relative/friend as the least preferred place of death was a significant risk factor for always wanting to be informed about limited time left (own home; OR=2.605: 95% CI: 1.225-5.540).

Of the independent variables included in the multivariate logistic regression model, only gender and least preferred place of death maintained statistical significance (Table 4). The following factors were significantly associated with always wanting to be informed about limited time left: being a woman (OR= 0.446: 95% CI:0.269-0.738; Ref: man) and having chosen the home of a relative/friend as the least preferred place of death (OR= 2.423: 95% CI:1.130-5.198; Ref: own home).

Discussion

To the best of our knowledge, this is the first study to investigate the preferences of community-dwelling older people living in Belo Horizonte for information within a scenario of serious illness with less than a year to live. The data shows that the majority of participants would always like to be informed about limited time left (74%). However, this preference was lower than that for wanting to be informed about symptoms and problems (89.3%) and available care options (96.3%). A European population-based study showed that the majority of participants (73.9%) would want to always be informed about limited time left³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.. However, the data showed that older people in Belo Horizonte showed greater preference than those in Europe among the older age bands (60-69 years: 75.1%; ≥ 70 years: 72.7% compared to 60-69 years: 74.2%; ≥ 70 years: 67.5%)³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305..

These findings suggest that health professionals should be adequately equipped with knowledge and effective patient communication skills³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,44 Sleeman K. End-of-life communication: let's talk about death. J R Coll Physicians Edinb 2013;43(3):197-199.. Moreover, they should be prepared to deliver news about the prognosis and provide information on the disease and available treatments to terminally ill patients³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.. It is also vital that health professionals know how to elicit and respect the preferences of patients who do not wish to be informed, which was the second most chosen option in the present study (20.5%). Support should be provided to these professionals in the form of end-of-life communication training and palliative care should be included in the medical school curriculum⁴4 Sleeman K. End-of-life communication: let's talk about death. J R Coll Physicians Edinb 2013;43(3):197-199.. It is also important to promote campaigns to raise awareness among the Brazilian population regarding issues such as death and dying and palliative care and to encourage patients to talk to doctors about their wishes and end-of-life care preferences.

Studies suggest that the preference for wanting to receive information depends on the type of population studied¹⁴14 Elkin EB, Kim SHM, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: Elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol 2007;25(33):5275-5280.^,3434 Ahalt C, Walter LC, Yourman L, Eng C, Pérez-Stable EJ, Smith AK. "Knowing is better": Preferences of diverse older adults for discussing prognosis. J Gen Intern Med 2012;27(5):568-575.. It has been suggested that in some traditionally Catholic countries such as Italy doctors show greater resistance to communicating complete information to seriously ill patients and are more likely to take a more paternalistic approach³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,3535 Toscani F. Deception, catholicism, and hope: Understanding problems in the communication of unfavorable prognoses in traditionally-catholic countries. Am J Bioeth 2006;6(1):W6-W18.. Other studies have shown that preferences for prognostic information may be influenced by ethnicity and race³⁴34 Ahalt C, Walter LC, Yourman L, Eng C, Pérez-Stable EJ, Smith AK. "Knowing is better": Preferences of diverse older adults for discussing prognosis. J Gen Intern Med 2012;27(5):568-575.. However, our data shows that, despite the fact that the majority of the participants were Catholic (66.8%) and that Brazilian doctors commonly take a paternalistic stance⁷7 Fumis RRL, De Camargo B, Del Giglio A. Physician, patient and family attitudes regarding information on prognosis: A Brazilian survey. Ann Oncol 2012;23(1):205-211.^,3636 Moritz RD, Deicas A, Capalbo M, Forte DN, Kretzer LP, Lago P, Pusch R, Othero J, Piva J, Silva NB, Azeredo N, Ropelato R. II Fórum do "Grupo de Estudos do Fim da Vida do Cone Sul": definições, recomendações e ações integradas para cuidados paliativos na unidade de terapia intensiva de adultos e pediátrica. Rev Bras Ter Intensiva 2011;23(1):24-29., most of our respondents would prefer to always be informed about limited time left. This may be partially explained by the profile of the participants of the present study. The study was conducted in settings where older people are offered various services, including exercise, literacy programs, computer/technology classes, and rights promotion and defense programs. The older people in these settings are therefore generally more active and independent and take care of their health. Older people with a different profile, who for example are more physically dependent, may have other preferences. However, these relations are not clear and, although evidence suggests that prognosis disclosure is vital to ensuring quality care, there is a lack of research on preferences for information among older people³⁴34 Ahalt C, Walter LC, Yourman L, Eng C, Pérez-Stable EJ, Smith AK. "Knowing is better": Preferences of diverse older adults for discussing prognosis. J Gen Intern Med 2012;27(5):568-575..

Gender can play a significant role in determining preferences for information and patient medical decision-making³⁷37 Fletcher K, Prigerson HG, Paulk E, Temel J, Finlay E, Marr L, McCorkle R, Rivera L, Munoz F, Maciejewski PK. Gender differences in the evolution of illness understanding among patients with advanced cancer. J Support Oncol 2013;11(3):126-132.. The present study shows that men were more likely to want to receive information about limited time left than women. Previous studies have also found that preference for receiving prognostic information is higher in men than women³3 Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013;22(10):2298-2305.^,3838 Marwit SJ, Datson SL. Disclosure preferences about terminal illness: An examination of decision-related factors. Death Stud 2002;26(1):1-20.. Other studies have shown that women with advanced cancer are more likely to take a more active role in decision-making, but desire greater emotional support from their doctors³⁸38 Marwit SJ, Datson SL. Disclosure preferences about terminal illness: An examination of decision-related factors. Death Stud 2002;26(1):1-20.^,3939 Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: A systematic review. Soc Sci Med 2005;61(10):2252-2264.. In contrast, male patients play a more passive role in decision-making, but want to receive more information about their health³⁸38 Marwit SJ, Datson SL. Disclosure preferences about terminal illness: An examination of decision-related factors. Death Stud 2002;26(1):1-20.^,3939 Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: A systematic review. Soc Sci Med 2005;61(10):2252-2264.. Moreover, it is known that gender influences aging and older people’s relationship with healthcare⁴⁰40 Silva SPC, Menandro MCS. As representações sociais da saúde e de seus cuidados para homens e mulheres idosos. Saude e Soc 2014;23(2):626-640. , meaning that men and women may show different perceptions and behaviors when it comes to end-of-life care.

Our findings also suggest that participants who chose the option “home of relative/friend” as the least preferred place of death were more likely to choose to be always informed about limited time left than those who chose “own home”. Our data show that the majority of respondents would want to participate in medical decision-making both in the scenarios capacity and incapacity to make decisions (95.3% and 64.5%, respectively)⁴¹41 Jorge R. Older people's preferences and priorities for end of life care in the city of Belo Horizonte, MG, Brazil [tese]. Aveiro: Universidade de Aveiro, Porto: Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto; 2017.. It is possible that the participants who chose the option “home of relative/friend” fear that they would have less decision-making autonomy in this setting and therefore want more information than those who chose “own home”, where their preferences are more likely to be respected. However, the evidence on place of death remains unclear, particularly among the older population, and less evidence exists regarding least preferred place of death²2 Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013;12(1):7.^,4242 Calanzani N, Moens K, Cohen J, Higginson IJ, Harding R, Deliens L, Toscani F, Ferreira PL, Bausewein C, Daveson BA, Gysels M, Ceulemans L, Gomes B, Project PRISMA. Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliat Care 2014;13(1):48.^,3030 Jorge R, Calanzani N, Freitas A, Nunes R, Sousa L. Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil. Ciên Saude Colet 2019;24(8):3003-3014.. Further research is therefore needed to explore the influence of these factors on preferences.

This study has some limitations. As mentioned above, older people with greater functional dependency and frailty may have been underrepresented. Future studies should therefore include individuals with greater functional dependency. Furthermore, none of the participants self-reported bad or very bad general health, meaning that some may have difficulty imagining a scenario of serious illness with less than a year to live. However, 19% of our participants had been diagnosed with serious illness in last 5 years and ≥66% had had a close relative/friend who had been seriously ill in last 5 years, or had lost a close relative/friend in the last five years, or had cared for a close relative/friend in last months of life. Therefore, the participants’ experiences with serious illness, dying and death helped them to contextualize the scenario used in the questionnaire. It is recommend that future studies should be conducted with older people with advanced disease to determine whether preferences for information change when someone is faced with a poor diagnosis.

Conclusion

The findings show that the majority of community-dwelling older people in Belo Horizonte would want to be informed about limited time left in a scenario of advanced disease. Men are more likely to want to receive prognostic information than women. These findings are a warning signal for health professionals providing care for older people with a life-limiting serious illness. It is vital to establish effective communication with patients as early as possible to ensure that their preferences are communicated and respected.

Acknowledgements

PRISMA was funded by the European Commission’s Seventh Framework Programme with the overall aim to co-ordinate high-quality international research into end-of-life cancer care. PRISMA aimed to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aimed to reflect the preferences and cultural diversities of citizens, the clinical priorities of clinicians, and appropriately measure multidimensional outcomes across settings where end-of-life care is delivered. Principal Investigator: Richard Harding. Scientific Director: Irene J Higginson. PRISMA members: Gwenda Albers, Barbara Antunes, Ana Barros Pinto, Claudia Bausewein, Dorothee Bechinger-English, Hamid Benalia, Emma Bennett, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noël Derycke, Martine de Vlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, Silvia Finetti, Nancy Gikaara, Barbara Gomes, Marjolein Gysels, Sue Hall, Richard Harding, Irene J Higginson, Stein Kaasa, Jonathan Koffman, Pedro Lopes Ferreira, Arantza Meñaca, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Richard A. Powell, Miel Ribbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart Van den Eynden, Paul Vanden Berghe and Trudie van Iersel.

R.Jorge. was supported by Coordination for the Improvement of Higher Education Personnel (CAPES). A.Teixeira is funded by a scholarship within project “NanoSTIMA: Macro-to-Nano Human Sensing: Towards Integrated Multimodal Health Monitoring and Analytics/NORTE-01-0145-FEDER-000016”, financed by the North Portugal Regional Operational Programme (NORTE 2020), under the PORTUGAL 2020 Partnership Agreement, and through the European Regional Development Fund (ERDF). L.Sousa. was supported by National Funds through FCT - Fundação para a Ciência e a Tecnologia within CINTESIS, R&D Unit.

References

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