Integrating preferences for end of life care in the continuum of cancer care

BACKGROUND: In 2014 the WHO called for all countries to integrate palliative care within the continuum of care in their health systems. This requires knowledge about people's preferences for care, to ensure they are timely met. The present talk examines population preferences for information disclosure, decision-making and place of death, and describes recent trends in place of death, comparing cancer with other diseases and Portugal with other countries. METHOD(S): Data on population preferences within a scenario of serious illness such as cancer with less than one year to live were obtained through the PRISMA telephone survey (2010) using random digit dialling. The sample included 9344 individuals aged 16 and over across seven European countries (1286 in Portugal). National place of death data derived from death certificates for residents aged 18 and over (2008-2012) were provided by the Portuguese Institute of Statistics (n = 522,007, including 126,660 deaths caused by cancer (24%)). Variations were examined using multivariate analysis. RESULT(S): We found preferences to always be informed regarding poor prognosis (total: 74%, Portugal: 74%), likely symptoms/problems (total: 81%, Portugal: 90%), and care options (total: 90%, Portugal: 95%). Extending life was prioritised by 4% (Portugal: 4%). Self-involvement in decisions was preferred by 74% (Portugal: 60%). Most preferred places to die were home and palliative care units/hospices (Portugal: 51%, 36%);hospitals and care homes were the least preferred (Portugal: 8%, 2%). However, 63% of deaths in Portugal occur in hospital (2008- 2012);this increased over time and is higher in cancer (77%). Multivariate logistic regression showed that those dying from cancer had greater odds of hospital death than cardiac, neurodegenerative diseases and Alzheimer's/dementia/senility, and lower than renal and liver failure, respiratory disease and HIV/AIDS. CONCLUSION(S): More than twothirds want to be informed and involved in decisions, and prioritise quality of life over extending life, but the results also reveal minorities that think differently. In Portugal, less than 1 in 10 prefers to die in hospital but the reality is that 6 in 10 die in hospital, with numbers increasing over time. Opposite to earlier findings in England and the Netherlands but similar to Sweden, cancer patients die more frequently in hospital (nearly 8 in 10 in Portugal). We found finer differences between cancer and other diseases that have been previously overlooked. RESEARCH IMPLICATIONS: Evidence on effective communication skills building interventions for clinicians and risk factors associated with hospital death is needed. Reasons why cancer patients die more often in hospital than others require further examination (e.g., aggressiveness of care near the end of life, differences in the planning and organisation of care). More detailed coding of other places of death in death certificates is needed, to distinguish home and care homes. CLINICAL IMPLICATIONS: Cancer treatment and care need to be reoriented to greater emphasis on quality of life improvement, with patient education and palliative care becoming mainstream. Clinical practice should facilitate discussion and delivery of preferences, supporting patients to be and to die out of hospital as much as possible when wished so, with a view to ensure preferences are met with quality for more.