End-of-life care in Germany: Study design, methods and first results of the EPACS study (Establishment of Hospice and Palliative Care Services in Germany)

被引：21

作者：

Pinzón L.C.E. ^{[1
]}

Münster E. ^{[1
]}

Fischbeck S. ^{[2
]}

Unrath M. ^{[1
]}

Claus M. ^{[1
]}

Martini T. ^{[1
]}

Weber M. ^{[3
]}

机构：

[1] University Medical Center of the Johannes Gutenberg, University of Mainz, Institute of Occupational, Social and Environmental Medicine, 55131 Mainz

[2] University Medical Center of the Johannes Gutenberg, University of Mainz, 55099 Mainz

[3] University Medical Center of the Johannes Gutenberg, University of Mainz, Interdisciplinary Palliative Care Unit, 55131 Mainz

来源：

BMC Palliative Care | / 9卷 / 1期

关键词：

Palliative Care; Home Care; Palliative Care Service; Deceased Person; Palliative Home Care;

D O I：

10.1186/1472-684X-9-16

中图分类号：

学科分类号：

摘要：

Background: In order to tackle the deficits in the provision of palliative home care, profound structural changes in the outpatient sector were introduced by law in Germany in 2007. The EPACS study was carried out (Research Accompanying the Establishment of Hospice and Palliative Care Services in Rhineland-Palatinate, Germany) to document the quality of inpatient and outpatient end-of-life care in Rhineland-Palatinate, Germany, before the implementation of these changes. With this article we focus on the study design and methods of the EPACS-Study. We further report first results regarding several aspects of outpatient end-of-life care. Methods: The cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate that had died from May 25 until August 24 of the year 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey. Results: The overall response proportion considering only those questionnaires that actually were delivered (n = 3833) was 36.0%. Factors influencing participation were age, sex, and marital status. 355 (25.8%) deceased persons had used professional home care in the four weeks prior to their death, but only very few persons had used a specialised palliative home care service (n = 30; 8.5%). There was a clear gap between the need for specialised outpatient care and the actual utilisation of these services. Conclusions: Satisfaction with professional home care was relatively high, but physicians were rated less favourable than nurses. There were deficits especially with respect to physicians' communicative and supportive skills. Further analyses are necessary to provide more detailed information about quality of care in different care settings and for distinct groups. Predictors of good care, as well as obstacles to it, must be further investigated. In the long run, a follow-up survey must be conducted to compare quality of home care before and after the structural changes in Germany. © 2010 Pinzán et al; licensee BioMed Central Ltd.

引用

共 36 条

[1]

Sepulveda C., Marlin A., Yoshida T., Ullrich A., Palliative Care: The World Health Organization's global perspective, J Pain Symptom Manage, 24, 2, pp. 91-96, (2002)

[2]

Ewers M., Schaeffer D., Dying in Germany - Consequences of societal changes for palliative care and the health care system, Journal of Public Health, 15, pp. 457-465, (2007)

[3]

Recommendation Rec (2003) 24 of the Committee of Ministers to Member States on the Organisation of Palliative Care, (2003)

[4]

Schindler T., Zur palliativmedizinischen Versorgungssituation in Deutschland, Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, 49, 11, pp. 1077-1086, (2006)

[5]

Schindler T., Ewald H., Ambulante und stationäre Organisationsstrukturen in der Palliativmedizin, Der Onkologe, 11, 4, pp. 376-383, (2005)

[6]

Zwischenbericht der Enquete-Kommission Ethik und Recht der Modernen Medizin. Verbesserung der Versorgung Schwerstkranker und Sterbender in Deutschland durch Palliativmedizin und Hospizarbeit vom 22.6.2005

[7]

Lueckmann S.L., Behmann M., Bisson S., Schneider N., Good idea but not feasible" - The views of decision makers and stakeholders towards strategies for better palliative care in Germany: A representative survey, BMC Palliat Care, pp. 8-10, (2009)

[8]

Beccaro M., Costantini M., Giorgi Rossi P., Miccinesi G., Grimaldi M., Bruzzi P., ISDOC Study Group. Actual and preferred place of death of cancer patients.Results from the Italian survey of the dying of cancer (ISDOC), J Epidemiol Community Health, 60, 5, pp. 412-416, (2006)

[9]

Higginson I.J., Sen-Gupta G.J., Place of care in advanced cancer: A qualitative systematic literature review of patient preferences, J Palliat Med, 3, 3, pp. 287-300, (2000)

[10]

Evans W.G., Cutson T.M., Steinhauser K.E., Tulsky J.A., Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities, J Palliat Med, 9, 1, pp. 100-110, (2006)

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