End of life after stroke: A nationwide study of 42,502 deaths occurring within a year after stroke

Introduction In the scientific literature, there is very limited empirical information on end-of-life issues after stroke in the scientific literature. The present nationwide study describes the circumstances surrounding deaths that occur within a year after a stroke. Patients and methods Datasets from three nationwide Swedish registers (on stroke, palliative care and cause of death) were linked. Basic information was available for 42,502 unselected cases of death that occurred within a year after a stroke and more detailed information was available for 16,408 deaths. Odds ratios for characteristics of end-of-life care were calculated by logistic regression. Results In the late phase after stroke (three months to one year), 46% of patients died in a nursing home, whereas 37% of patients died in a hospital after readmission and 10% of patients died at home. Eleven per cent of deaths were reported as being unexpected. A next of kin was present at 49% of deaths. The frequency of unattended deaths (neither next of kin nor staff were present at the time of death) ranged from 5% at home with specialised home care to 25% in hospitals. Discussion This is, by far, the largest study published on end-of-life issues after stroke. Major differences between countries in healthcare, community services, family structure and culture may limit direct transfer of the present results to other settings. Conclusion There is considerable discordance between presumed ‘good death’ late after stroke (dying at home surrounded by family members) and the actual circumstances at the end of life.

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Whose Business is Dying? Death, the Home and Palliative Care

Cultural Studies Review ◽

10.5130/csr.v17i1.1971 ◽

2011 ◽

Vol 17 (1) ◽

Cited By ~ 16

Author(s):

John Rosenberg

Keyword(s):

Palliative Care ◽

End Of Life ◽

Health Care Services ◽

Death Scene ◽

Care Services ◽

Life Issues ◽

Palliative Care Services ◽

End Of Life Issues ◽

Dying At Home ◽

Communal Responsibility

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

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End-of-Life Care and Circumstances of Death in Patients Dying As a Result of Cancer in Belgium and the Netherlands: A Retrospective Comparative Study

Journal of Clinical Oncology ◽

10.1200/jco.2011.34.9498 ◽

2011 ◽

Vol 29 (32) ◽

pp. 4327-4334 ◽

Cited By ~ 43

Author(s):

Koen Meeussen ◽

Lieve Van den Block ◽

Michael A. Echteld ◽

Nicole Boffin ◽

Johan Bilsen ◽

...

Keyword(s):

The Netherlands ◽

End Of Life ◽

End Of Life Care ◽

Treatment Preferences ◽

Life Care ◽

Patients With Cancer ◽

Life Issues ◽

End Of Life Issues ◽

Retrospective Comparative Study ◽

At Home

Purpose To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. Patients and Methods A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By using similar standardized procedures, GPs reported on aspects of end-of-life care and the circumstances of nonsudden death of patients with cancer in their practice. Results Of the 422 reported patients with cancer, most resided at home during the last year of life (Belgium, 91%; the Netherlands, 95%). Death occurred at home in 34% (Belgium) and 61% (the Netherlands) and in the hospital in 29% (Belgium) and 19% (the Netherlands). In the last month of life, end-of-life issues were more often discussed in the Netherlands (88%) than in Belgium (68%). In both countries, physical problems were discussed most often (Belgium, 49%; the Netherlands, 78%) and spiritual issues least often (Belgium, 20%; the Netherlands, 32%). Certain end-of-life treatment preferences were known for 43% (Belgium) and 67% (the Netherlands) of patients. In the last week of life, treatment was most often focused on palliation (Belgium, 94%; the Netherlands, 91%). Physical distress was reported in 84% (Belgium) and 76% (the Netherlands) of patients and psychological distress in 59% and 36%. Most distressing was lack of energy (Belgium, 73%; the Netherlands, 71%) and lack of appetite (Belgium, 61%; the Netherlands, 53%). Two thirds of patients were bedridden (Belgium, 67%; the Netherlands, 69%). Conclusion Although place of death and communication about end-of-life issues differ substantially, a palliative treatment goal is adopted for the vast majority of patients in both countries. However, GPs reported that the majority of patients experienced symptom distress at the end of life, which suggests important challenges remain for improving end-of-life care.

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