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)

Abstract

BackgroundIn 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.MethodsThe 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.ResultsThe 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.ConclusionsSatisfaction 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.

Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

“…The large degree of unmet need of emotional and spiritual support for the family perceived by informants participating in this study (Table 3), and among others internationally [10,27,39,44,46,47], confirms this perception is widespread. Research suggests healthcare providers and family members may perceive emotional and spiritual support differently.…”

“…Although many were provided information, over half of informants did not feel prepared or felt knowledgeable about the medications used for symptom management. Similar to the need for emotional support, the lack of adequate communication during the time when death was approaching has been documented internationally [10,27,34,44,47] and identified by family members and patients as a priority area for the improvement [34,45]. Recently, the Canadian Hospice Palliative Care Association has been working with other organizations to address this problem through its ‘Speak Up’ campaign to improve advance care planning [36].…”

“…The need for specific programs or targeted interventions to enhance these skills may be required [44,45]. …”

Preference for Place of Death in Germany

“…12 Briefly, the EPACS (Establishment of Hospice and Palliative Care Services in Germany) study was carried out in the form of a cross-sectional, written survey between September 2008 and January 2009. The base of the survey was a random sample of 5000 addresses of deceased inhabitants with principal residence in the German federal state of Rhineland-Palatinate (4 million inhabitants), who had died between May 25 and August 24, 2008.…”

Policy analysis: Palliative care in Ireland

“…At a time when national and international bodies are formulating and implementing policy on palliative care [5][6][7][8][9][10], this paper analyses the Irish experience: the origin and substance of national policy content, the Walt and Gilson (1994) [13].…”