Abstract Background Ensuring that national governance and healthcare systems include the organization and provision of palliative care in all care settings for all patients in need is a global imperative. In cancer care, early palliative care can improve quality of life for patients and families and receiving specialised palliative care increases opportunities for care and death in the preferred place, which for a majority is the own home. In Sweden, national general health policy only vaguely addresses palliative care, leading to the introduction of specific guidelines in 2013. These coexist with national disease-specific guidelines for cancer care that are ambiguous in their conceptualisation and inclusion of palliative care. From a governance and organisation perspective, place of death serves as a key indicator of palliative care infrastructure and organisation. Since policy initiation in 2013, hospital has remained the predominant place of death in Sweden. Further, regional disparities persist and are influenced by factors such as age, sex, and access to specialised services, pointing to inequities and unsatisfactory governance and organisation of palliative care. The aim of this study was to explore the perspectives of cancer care leads and patient representatives on national governance and organisation of palliative cancer care. Methods Interpretive description methodology was used to generate and inductively analyse data from group discussions and individual interviews with 36 cancer- and palliative care leads, and patient representatives from the six Swedish regional cancer centres. Results The analysis revealed patterns of interdependent conditions that, from the perspectives of cancer care leads and patient representatives shape the governance and organisation of palliative cancer care and seemingly trigger ambiguity regarding responsibilities and inequalities in service provision: Multilevel knowledge gaps about palliative care; Challenges and complexities of providing palliative care in a fragmented healthcare system; and Policy impact and ownership problems. Conclusions The study revealed significant challenges in national palliative cancer care governance, primarily due to a multilevel knowledge gap about palliative care, a fragmented healthcare system, and non-directive national policies. Integration of mandatory national minimum requirements for palliative care in national policy, and clearer standards for palliative care resource allocation are needed. Comprehensive strategies and coordinated efforts that can be uniformly implemented across regions, and establishing national collaborative spaces for regional stakeholders are essential to ensure equitable and timely access to palliative care for all patients with advanced cancer.
Larsdotter et al. (Wed,) studied this question.