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A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study
Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.ORCID iD: 0000-0001-9623-5813
Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.ORCID iD: 0000-0002-5523-8126
Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet; Karolinska universitetssjukhuset.ORCID iD: 0000-0003-4736-500X
Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Högskolan Dalarna; Centrum för klinisk forskning, Dalarna.ORCID iD: 0000-0003-2853-0575
2022 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 20, no 3, p. 357-362Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors.

METHOD: A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors.

RESULTS: About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin.

SIGNIFICANCE OF RESULTS: The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

Place, publisher, year, edition, pages
2022. Vol. 20, no 3, p. 357-362
Keywords [en]
Communication, End of life, Older people, Palliative care, Quality indicators, Register study
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-9020DOI: 10.1017/S1478951521000973ISI: 000778901000001PubMedID: 34158146OAI: oai:DiVA.org:esh-9020DiVA, id: diva2:1574080
Available from: 2021-06-28 Created: 2021-06-28 Last updated: 2022-12-01Bibliographically approved

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Melin-Johansson, ChristinaSveen, JosefinLövgren, MalinUdo, Camilla

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