Abstract
Background: Swedish palliative care policy, launched in 2013, emphasize peoples´ right to participate in planning and decision-making about their end-of-life care, including where to receive care and die. Moreover, the policy stresses early integration of palliative care in all care places. This abstract presents a public health palliative care research project with the overall aim to disclose potential policy responses and prerequisites for equal palliative cancer care in Sweden. We hypothesized that a national palliative care policy shapes healthcare services in ways that influence place of death for people dying of cancer.
Approach: The project consists of several studies: 1) Longitudinal trends in place of death and associated factors in Sweden 2013-2019 was investigated based on population-level register data of all cancer deaths, statistically analysed with logistic and linear regressions; 2) Preferences for place to receive end-of-life care and die in the Swedish population was investigated based on survey data from a stratified total population sample 2023, statistically approached with latent class analysis; 3) Palliative care inclusion in all national disease-specific policy documents for adults with cancer was investigated using document analysis; and 4) Cancer care leaders´ perspectives (including patient representatives) on governance and organisation of palliative cancer care in Sweden were investigated using focus groups and individual interviews.
Results: The results show a trend in the place of death 2013-2019, towards a decrease in hospital deaths and increase in deaths at home. However, the trend is inconsistent and with large cross-regional variations. Moreover, there is a major discrepancy between preferences and actual place of death among Swedish citizens. While a majority prefer to be cared for and die at home, still, in 2019, the Swedish cancer population is characterised by a high proportion of hospital deaths, low proportions of home deaths, especially within the older population, and fewer nursing home deaths than within the general population. We also found large variations in how palliative care is included in national cancer specific guidelines, and governance and organisation of palliative cancer care seem to be performed on individual and local level rather than national and with inter-regional differences. Finally, barriers in the cancer care context seem to potentially hinder early integration of palliative care according to national palliative care policy.
Implications: Our hypothesis could not be confirmed. The results instead point to a policy-implementation gap that may be related to several factors, including vague adoption of a receptive context for change as well as the quality and coherence of the policy in place and how it has been implemented in decision-making. this indicates that prerequisites for palliative care vary within a country in ways that hinder equity in palliative care, despite Sweden called out to be a country with an advanced level of palliative care integration. Clearer articulation of goals and strategies related to place of death in national palliative care policy is suggested, and public health-oriented interventions aimed at strengthening resources to enable early integration of palliative care in both primary care, at home and in nursing homes are needed.