A Nationwide Survey of Palliative Care Units in Germany on Structures and Patient Care

The first palliative care unit in Germany was opened at Cologne University Hospital on 7 April 1983. The years since then have seen far-reaching changes in the content, tasks, and structures of hospice work and palliative medicine in this country.

In light of the planned structural reform of hospitals in Germany, the “Inpatient Care Study Group” of the German Association for Palliative Medicine (DGP) set itself the goal of surveying the current status of structures and patient care in German palliative care units.

Methods

The first step was to document all palliative care units for adults in Germany as of May 2023. The sources of information were the DGP’s Guide to Hospice and Palliative Care in Germany (Wegweiser Hospiz- und Palliativversorgung Deutschland) (1) and the German Hospital Directory published by the Federal Statistical Office of Germany (Section 3752 – Palliative Medicine) (2). The data in the Guide were double-checked for accuracy. A questionnaire on unit structure (as of 31 December 2022) and on patient care in the palliative care unit during 2022 was drawn up and send to all palliative care units.

The questionnaire could be filled in on paper and returned or completed using an online tool (Lime Survey, Version 6.2.6). All responses were pseudonymized on data protection grounds. The data were analyzed using descriptive statistics.

Results

Altogether, 336 palliative care units were identified. There were 1893 hospitals in Germany on 31 December 2022, so this represented a prevalence of 17.8% (95% confidence interval [16.0%; 19.5%]). A total of 219 palliative care units took part (response rate 65.2%). The characteristics of the participating hospitals were as follows: management: public 51.6% (113), charitable 32.0% (70), private 16.4% (36); hospital size: < 200 beds 13.2% (29), 200–599 beds 48.9% (107), 600–799 beds 11.0% (24), ≥ 800 beds 26.9% (59); oncological treatment available (e.g., department of oncology, oncology center, comprehensive cancer center) 80.8% (177); inpatient consultative palliative care team (general and/or specialized) 55.7% (122); palliative care outpatient clinic 17.4% (38); palliative care day ward 2.7% (6); specialized outpatient palliative care team (SOPC) 36.5% (80).

A mean number of 34.1 palliative care beds were available per 1 million persons (Table 1). The distribution of newly established units over time was as follows: 1983–1989: 0.9% (2), 1990–1999: 14.2% (31), 2000–2009: 42.0% (92), 2010–2019: 35.6% (78), 2020–2022: 4.1% (9), unspecified: 3.2% (7). 87.7% of all palliative care units were designated as autonomous palliative facilities with ≥ 5 beds (Table 2). On average a palliative unit cared for 262 patient cases per year, of whom 210 had cancer. The mean length of stay was 11.0 days. The mean number of deaths per year was 130.

Table 1

Hospitals and palliative care units and beds by federal state (May 2023)

Table 2

Care structures in German palliative care units in 2022 (N = 219)

Overall, 159 units billed for additional services on the basis of the diagnosis-related groups system (German Procedure Classification OPS 8-982.x 20.1% [44], 8-98e.x 52.5% [115]). Fifty units (22.8%) were designated as special facilities. Fifty-two of the 219 palliative care units (23.7%) expressed the fear that the unit could be closed in the wake of the impending structural reforms. The distribution of the responses by hospital size was as follows: < 200 beds 48.3% (14/29), 200–799 beds 24.4% (32/131), ≥ 800 beds 10.2% (6/59).

Discussion

The survey of palliative care units in Germany revealed that (as of May 2023) almost 20% of hospitals in Germany have such a unit for adults. In Germany as a whole, there were 34.1 palliative care beds per 1 million inhabitants, distinctly below the level of 50 per 1 million inhabitants recommended by the European Association for Palliative Care (EAPC) (3).

Of the newly founded units, most opened the wards in the period 2000–2009, with numbers decreasing in the years thereafter. Palliative care units were predominantly established in hospitals that offer specialized oncological care. The effort and intention of some administrators to have their hospitals certified as oncology centers may well have played a central part in this regard. These needs seem to have been largely satisfied, and this probably could partly explain the reduction in numbers of new units.

Over 80% of the persons treated in palliative care units were patients with cancer. This suggests pronounced underprovision of care for patients with non-oncological illnesses, although research has shown that many such diseases generate a high demand for palliative medical care (4). Palliative care units are not primarily places for end-of-life care, as is shown by the fact that only every second person admitted to such a unit dies there. It is apparent, however, that many patients are still being referred very late, which stands in contrast to the demands for the timely integration of palliative care.

The status of palliative care units in the planned structural reform of hospitals is not yet completely clear. If the need for palliative care is to come anywhere near being satisfied, however, palliative care units are urgently required in hospitals at all different levels of care.

Burkhard Dasch, Heiner Melching, Bernd Oliver Maier, Philipp Lenz, Claudia Bausewein, Johannes Rosenbruch

Central Palliative Medicine Unit, University Hospital Münster (Dasch, Lenz) [e-mail]. German Association for Palliative Medicine (DGP), Berlin (Bausewein, Maier, Melching). Department of Medicine III, Palliative Medicine and Oncology, St. Josefs Hospital Wiesbaden (Maier). Department of Palliative Medicine, LMU Hospital Munich (Bausewein, Rosenbruch)

Ethics approval

The survey was evaluated and approved by the ethics committee of Westfalen–Lippe Medical Association (ref. no. 2023–217-f-S).

Conflict of interest statement
BD and JR are spokespersons for the Palliative Units Section of the DGP’s Inpatient Care Study Group; PL is one of the spokespersons for the Palliative Services Section of the DGP’s Inpatient Care Study Group; BOM is spokesperson for the DGP’s Inpatient Care Study Group; HM is managing director of the DGP; BOM is vice-president of the DGP; CB is president of the DGP.

Manuscript received on 30 September 2023, revised version accepted on 15 November 2023.

Translated from the original German by David Roseveare

Cite this as:

Dasch B, Melching H, Maier BO, Lenz P, Bausewein C, Rosenbruch J: A nationwide survey of palliative care units in Germany on structures and patient care. Dtsch Arztebl Int 2024; 121: 92–3. DOI: 10.3238/arztebl.m2023.0251

References

1. Deutsche Gesellschaft für Palliativmedizin (DGP). Wegweiser Hospiz- und Palliativversorgung Deutschland. www.wegweiser-hospiz-palliativmedizin.de (last accessed on 9 November 2023).

2. Statistisches Bundesamt (Destatis). Verzeichnis der Krankenhäuser und Vorsorge- oder Rehabilitationseinrichtungen in Deutschland 2021. Wiesbaden, 2023.

3. Radbruch L, Payne S: White paper on standards and norms for hospice and palliative care in Europe: part 2. Eur J Palliat Care 2010; 17: 22–33.

4. Ostgathe C, Alt-Epping B, Golla H, et al.: Non-cancer patients in specialized palliative care in Germany: what are the problems? Palliat Med 2011; 25: 148–52