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).

	Hospitals*1		Palliative care units		Palliative care beds		Palliative beds per 1 mill. inh.*2
	N	%	N	%	N	%
Baden–Württemberg	249	13.2	33	9.8	327	11.4	29.0
Bavaria	353	18.6	51	15.2	488	17.0	36.5
Berlin	88	4.6	11	3.3	103	3.6	27.4
Brandenburg	63	3.3	9	2.7	71	2.5	27.6
Bremen	14	0.7	2	0.6	22	0.8	32.1
Hamburg	61	3.2	5	1.5	48	1.7	25.4
Hesse	149	7.9	21	6.3	181	6.3	28.3
Mecklenburg–West Pomerania	38	2.0	8	2.4	77	2.7	47.3
Lower Saxony	173	9.1	35	10.4	267	9.3	32.8
North Rhine–Westph.	333	17.6	73	21.7	571	19.8	31.5
Rhineland-Palatinate	85	4.5	25	7.4	183	6.4	44.0
Saarland	22	1.2	5	1.5	51	1.8	51.4
Saxony	78	4.1	23	6.8	195	6.8	47.7
Saxony–Anhalt	45	2.4	9	2.7	70	2.4	32.0
Schleswig–Holstein	93	4.9	10	3.0	107	3.7	36.2
Thüringen	49	2.6	16	4.8	118	4.1	55.5
Total	1893	100	336	100	2879	100	34.1

*¹ As of 31 December 2022; *² with reference to the population on 31 December 2022.

inh., Inhabitants

Table 2. Care structures in German palliative care units in 2022 (N = 219).

Characteristic	Number/statistics
Autonomous unit with ≥ 5 beds	192	87.7%
Palliative care beds	(216); mean 9.5 [95% CI 9.0–9.9]; min 3; max 32
Length of stay (days)	(187); mean 11.0 [95% CI 10.6–11.5]; min 4.2; max 21.0
Department
– Internal medicine	77	35.2%
– Palliative care medicine (autonomous)	55	25.1%
– Anesthesiology	29	13.2%
– Hematology/oncology (autonomous)	24	11.0%
– Other or interdisciplinary PCU	32	14.6%
– Unspecified	2	0.9%
Staffing level – FTE per bed in use
– Physicians ≥ 0.2	125	57.1%
– Nurses ≥ 1.2	121	55.3%
Selected occupations represented in a multiprofessional palliative care team
– Social services	208	95.0%
– Physiotherapy	205	93.6%
– Psycho-oncology	188	85.8%
– Hospital chaplain	191	87.2%
Patient cases cared for
Total cases per year	(197); mean 262 [95% CI 245–279]; min 5; max 764
Cases per year with cancer	(187); mean 210 [95% CI 195–225]; min 5; max 618
Deaths per year	(187); mean 130 [95% CI 118–142]; min 3; max 466
Discharged to own home	(165); mean 78 [95% CI 71–86]; min 5; max 350
Discharged to a hospice	(164); mean 32 [95% CI 28–36]; min 1; max 200
Discharged to a care home	(156); mean 23 [95% CI 19–27]; min 0; max 114

CI, Confidence interval; FTE, full-time equivalents; max, maximum; min, minimum; PCU, palliative care unit

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.