Resumo O objetivo deste estudo foi determinar as preferências de pessoas idosas, residentes na comunidade, pela divulgação de informações relativas ao tempo de vida limitado, sintomas e problemas, e opções disponíveis para cuidados numa situação de doença grave, com menos de um ano de vida; e identificar os fatores associados com a preferência pela informação sobre prognóstico de vida limitado. Foi aplicado a versão brasileira do questionário sobre Preferências e Prioridades para os Cuidados de Fim de Vida (PRISMA), por meio de entrevista face-a-face, a 400 pessoas idosas, residentes na cidade de Belo Horizonte, Minas Gerais, Brasil. Os principais resultados indicam que: 74.0% preferem ser informados sobre o tempo de vida limitado, 89.3% sobre os sintomas e problemas e 96.3% acerca das opções de cuidados. Os fatores associados à preferência pela informação sobre prognóstico de vida limitado foram: gênero (mulheres: OR=0.446, 95% IC:0.269-0.738) e local menos preferido de morte (casa de um familiar ou amigo: OR=2.423, 95% IC:1.130-5.198). Esses resultados mostram que a maioria das pessoas idosas deseja ser informada numa situação de doença avançada, com menos de um ano de vida. Os profissionais de saúde precisam estar preparados para antecipar notícias sobre o prognóstico de vida limitado e a doença.

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.

Resumo O objetivo deste estudo foi determinar as preferências de pessoas idosas, residentes na comunidade, pela divulgação de informações relativas ao tempo de vida limitado, sintomas e problemas, e opções disponíveis para cuidados numa situação de doença grave, com menos de um ano de vida; e identificar os fatores associados com a preferência pela informação sobre prognóstico de vida limitado. Foi aplicado a versão brasileira do questionário sobre Preferências e Prioridades para os Cuidados de Fim de Vida (PRISMA), por meio de entrevista face-a-face, a 400 pessoas idosas, residentes na cidade de Belo Horizonte, Minas Gerais, Brasil. Os principais resultados indicam que: 74.0% preferem ser informados sobre o tempo de vida limitado, 89.3% sobre os sintomas e problemas e 96.3% acerca das opções de cuidados. Os fatores associados à preferência pela informação sobre prognóstico de vida limitado foram: gênero (mulheres: OR=0.446, 95% IC:0.269-0.738) e local menos preferido de morte (casa de um familiar ou amigo: OR=2.423, 95% IC:1.130-5.198). Esses resultados mostram que a maioria das pessoas idosas deseja ser informada numa situação de doença avançada, com menos de um ano de vida. Os profissionais de saúde precisam estar preparados para antecipar notícias sobre o prognóstico de vida limitado e a doença.

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.

Resumo Examinamos as preferências das pessoas para o local da morte e identificamos os fatores associados com a preferência pela morte em casa. Perguntamos para uma amostra representativa (N = 400) de pessoas idosas (≥ 60 anos) residentes da cidade de Belo Horizonte, sobre suas preferências pelo local da morte numa situação de doença grave, com menos de um ano de vida. Os dados foram analisados utilizando regressão binomial para identificar os fatores associados. Indicaram a casa como o local preferido de morte, 52,2%. Cinco variáveis foram associadas à preferência por morte em casa: aqueles que vivem com 1 criança (odds ratio(OR)0,41; intervalo de confiança (CI)95%:0,18-0,92; ref: nenhuma criança); ter até 4 anos de escolaridade (OR0,42; CI95%:0,20-0,89; ref: ensino superior); ser difícil viver com o rendimento atual (OR3,18; CI95%:1,53-6,62; ref: vive confortavelmente); avaliar a sua saúde geral como razoável (OR2,07; CI95%:1,06-4,03; ref: saúde muito boa) e selecionar “escolher quem toma decisões sobre os cuidados” como a prioridade de cuidado mais importante (OR2,43; CI95%:1,34-4,40; ref: morrer no local que se quer). A maioria dos entrevistados expressaram preferência por morrer em casa. No entanto, a maioria dos residentes de Belo Horizonte morre nos hospitais, sugerindo que as preferências não estão sendo consideradas.

Abstract We examined people’s preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting “choosing who makes decisions about your care” as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

Resumo Examinamos as preferências das pessoas para o local da morte e identificamos os fatores associados com a preferência pela morte em casa. Perguntamos para uma amostra representativa (N = 400) de pessoas idosas (≥ 60 anos) residentes da cidade de Belo Horizonte, sobre suas preferências pelo local da morte numa situação de doença grave, com menos de um ano de vida. Os dados foram analisados utilizando regressão binomial para identificar os fatores associados. Indicaram a casa como o local preferido de morte, 52,2%. Cinco variáveis foram associadas à preferência por morte em casa: aqueles que vivem com 1 criança (odds ratio(OR)0,41; intervalo de confiança (CI)95%:0,18-0,92; ref: nenhuma criança); ter até 4 anos de escolaridade (OR0,42; CI95%:0,20-0,89; ref: ensino superior); ser difícil viver com o rendimento atual (OR3,18; CI95%:1,53-6,62; ref: vive confortavelmente); avaliar a sua saúde geral como razoável (OR2,07; CI95%:1,06-4,03; ref: saúde muito boa) e selecionar “escolher quem toma decisões sobre os cuidados” como a prioridade de cuidado mais importante (OR2,43; CI95%:1,34-4,40; ref: morrer no local que se quer). A maioria dos entrevistados expressaram preferência por morrer em casa. No entanto, a maioria dos residentes de Belo Horizonte morre nos hospitais, sugerindo que as preferências não estão sendo consideradas.

Abstract We examined people’s preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting “choosing who makes decisions about your care” as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. AUTHORS' CONCLUSIONS: The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.