End-of-Life Care: Location of Death Over Time and the Promotion of a Palliative Approach through Consultations with Palliative Care Specialists and Palliative Care Policy

Aims

A. To identify trends and variations in the place of death at the population level between 2012 and 2021 and to investigate possible associations between place of death and individual characteristics, clinical, geographical, and socio-economic factors.

B. To exploratively investigate potential inequality regarding access to and outcomes of consultation with palliative care specialists in the last week of life for patients with potential palliative care needs.

C. To identify the logic and any gaps in policy documents for palliative care at the national and regional levels and investigate the influence of such policy on the design of end-of-life care from the perspective of those regionally responsible for palliative care processes.

About the studies

Study A is based on all deaths in Sweden from 2012 to 2021 with the place of death as the outcome.

Study B is based on all those who died during the same period and had an expected death and were cared for within general palliative care (i.e., non-specialized palliative care forms) with consultation with a palliative care specialist in the last week of life as the outcome.

Both studies utilize registry data, including data from the Cause of Death Register and the Swedish Palliative Registry.

Study C combines analysis of policy documents with focus groups with representatives responsible for palliative care processes at the six overarching health and medical care regions.

Results

The results will be particularly significant regarding the influence of the introduction of the national policy for palliative care that was implemented in Sweden starting in 2013.

Methods

The project is conducted by two collaborating research groups with expertise in palliative care, including registry research and qualitative methods.

Publications: 

Böling S, Gyllensten H, Engström M, Lundberg E, Berlin J & Öhlén J. (2024). Palliative care consultation in the last week of life and associated factors: a scross-sectional general population study, Palliative Care and Social Practice, 18, 26323524241293818. doi.org/10.1177/26323524241293818

Larsdotter C, Nyblom S, Gyllensten H, Fürst CJ, Ozanne A, Hedman R, Nilsson S & Öhlén J. (2024). Trends in the place of death in Sweden from 2013 to 2019 – disclosing prerequisites for palliative care. Palliative Care and Social Practice, 18, 26323524241238232. doi.org/10.1177/26323524241238232

Lundberg E, Ozanne A, Larsdotter C, Böling S, Dellenborg L, Enstedt D & Öhlén J. (2023) Place of death among foreign-born individuals: a national population-based register study. Palliative Care and Social Practice, 17, 26323524231185157.00 doi.org/10.1177/26323524231185157

Nilsson S, Öhlén J, Nyblom S, Ozanne A, Stenmarker M & Larsdotter C. (2024). Place of death among children from 0 to 17 years of age: A population‐based study from Sweden. Acta Paediatrica. doi.org/10.1111/apa.17308

Nyblom S, Öhlén J, Larsdotter C, Ozanne A, Fürst CJ, & Hedman R. (2024). Registry study of cardiovascular death in Sweden 2013-2019: Home as place of death and specialized palliative care are the preserve of a minority. International Journal of Cardiology Cardiovascular Risk and Prevention, 200328. doi.org/10.1016/j.ijcrp.2024.200328

O'Sullivan A,  Carling L, Öhlén J, Nyblom S, Ozanne A, Hedman R, Fürst CJ & Larsdotter C (2024). Palliative care in national policy documents for adults with cancer and non-cancer diseases with potential palliative care needs: A document analysis. Palliative Care and Social Practice. doi.org/10.1177/26323524241296145

O'Sullivan A, Larsdotter C, Sawatsky R, Alvariza A, Imberg H, Cohen J & Öhlén J. (2024). Place of care and death preferences among recently bereaved family members: a cross-sectional survey. BMJ Supportive & Palliative Care. doi: 10.1136/spcare-2023-004697

Öhlén J, Fürst CJ & Larsdotter C. (2023) Var drör vi? Palliativ vård (3), 17-19.  https://wp.palliativvard.se/wp-content/uploads/2024/03/PV_2303_webb.pdf