Place of Death Trends and Utilization of Outpatient Palliative Care at the End of Life
Analysis of Death Certificates (2001, 2011, 2017) and Pseudonymized Data From Selected Palliative Medicine Consultation Services (2017) in Westphalia, Germany
Background: The largest German study on place of death was performed for deaths in selected regions of Westphalia in the years 2001 and 2011. In the period thereafter, provision of palliative care was regionally expanded. This upgrade included the establishment of palliative medicine consultation services (PMCS), combining general and specialized palliative care on an outpatient basis. A follow-up place of death survey took place in 2017. The aim was to depict the trends in place of death between 2001 and 2017. A second goal was to determine how often outpatient PMCS were used by persons who died in 2017.
Methods: Descriptive analysis of place of death as specified in all death certificates (2001, 2011, 2017) issued in the cities of Bochum and Münster and the districts of Borken and Coesfeld. Comparison of pseudonymized data on deceased patients (2017) treated by the PMCS of Münster and Coesfeld with the place of death database to ascertain the rate of PMCS care at the end of life.
Results: A total of 38 954 death certificates were analyzed, and 5887 deaths were compared with PCMS data. The distribution of place of death was as follows: (2001, 2011, 2017; age standardized; %): own residence 27.8; 23.3; 21.3; hospital: 55.8; 51.8; 51.8; palliative care unit: 0.0; 1.0; 6.2; hospice: 1.9; 4.5; 4.8; nursing home: 13.1; 18.6; 20.4; other: 1.2; 1.2; 1.5. The rate of PMCS use was 28.8% (1694/5887).
Conclusion: Over the period 2001–2017, the proportion of people who died at home or in the hospital went down, while the number who died in a palliative care unit, hospice, or nursing home increased. In the city of Münster and the district of Coesfeld, one fourth of the people who died in 2017 received PMCS care at the end of life.
Every year, slightly more than one percent of the German population of more than 83 million residents die (1). Representative surveys on “Dying in Germany“ have shown that the vast majority of Germans wish to die at home (2012/2017): at home: 66/57%, specialized facility for end-of-life care: 18/27%; hospital: 3/4%; nursing home: 1/1%, no information: 12/10% (2). This result is in line with international studies on the preferred place of death (3, 4, 5).
In actual fact, only a minority of people die outside of institutions in Western industrialized countries (Table 1) (6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16). In Germany, the largest place of death studies were conducted in the years 1995 (17) and 2001/2011 (18). They found that 39.8% and 27.8%/23.3%, respectively, died at home, while 56.9% and 70.8%/75.9% (1995 and 2001/2011, respectively) died in institutions.
In the modern hospice and palliative care movement, the place of death is regarded as a quality indicator for needs-oriented care of the dying. Usually, a distinction is made between general and specialized palliative care on an outpatient basis. It is estimated that about 10% to 20% of all dying persons require specialized palliative care (19, 20).
In the Westphalia-Lippe region of Germany, the Association of Palliative Care Physicians in Westphalia-Lippe, various health insurances and the Association of Statutory Health Insurance Physicians in Westphalia-Lippe signed a palliative care contract which combines general and specialized palliative care on an outpatient basis, a unique approach in Germany (21). The aim of the contract was to provide the broadest possible spectrum of palliative care on an outpatient basis. Specifically, the coordinating general practitioner agrees to collaborate with a so-called palliative medicine consultation service (PMCS). The PMCS meets both staffing and professional quality standards and additionally is accessible 24/7 to ensure the availability of palliative medicine consultation services whenever they are needed. However, general practitioners participating in the care contract are excluded from billing specific billable items of the Uniform Value Scale (EBM) fee catalogue which are related to palliative home care.
The data presented here are results from a follow-up survey of the study on place of death conducted by Dasch et al. (18) for the year 2017.
The aim of this study was to depict the trends in place of death between 2001 and 2017. A second aim was to determine, based on pseudonymized PMCS data, how often outpatient PMCS were utilized at the end of life by persons who died in 2017.
The study was designed as a population-based cross-sectional survey and is a trend study, depicting changes in the distribution of place of death at various points in time.
The study region comprised selected regions of Westphalia (the cities of Bochum and Münster and the districts of Coesfeld and Borken). The structural data of the study region are summarized in Table 2. The study regions were selected to allow for urban-rural comparisons. In addition, for reasons of data protection, data collection had to be undertaken in the offices of the local health authorities. This task was performed by the principal investigator and study staff. In order to keep travelling distances to a minimum, regions in close proximity to where the team members lived were selected.
Definition of place of death
The place of death was divided into the following categories: at home, hospital, palliative care unit, hospice, nursing home, other. For detailed information about the definition of place of death, please refer to the initial study (18).
The analysis is based on the full dataset of archived death certificates for the years 2001, 2011 and 2017. Data on the following variables were collected: place of death, date of death, time of death, place of residence, age, gender, mode of death, selected information about the cause of death (such as tumor disease, dementia, among others). All information about place of death was checked for plausibility.
Pseudonymized data of selected PMCS
All PMCS were asked to provide pseudonymized data (gender, age of death, date of death) of deceased patients who died in 2017. The PMCS of Münster and Coesfeld promised to support the study, in keeping with data protection requirements. The other PMCS declined to participate, citing time constraints or changes in data protection requirements as reasons. It was possible to compare over 90% of the data with the place of death database. Most cases where matching failed were due to errors in the documentation of the date of death.
The distribution of place of death was depicted both in absolute numbers and percentages and tested for differences between the survey years 2001, 2011 and 2017. The place of death was stratified for gender and age. Deaths were tested for differences over time, focusing on the variables age, gender and place of residence. The following statistical tests were used: continuous data, parametric > unpaired t-test, non-parametric > Mann–Whitney U test; categorical data > chi-square test. In order to minimize the multiple comparison-related increase in the chance of making a type I error, the significance level of p = 0.05 was subjected to a Bonferroni correction. We carried out a direct age standardization to adjust for confounding by age. We calculated the expected deaths in the 2001, 2011 and 2017 populations based on the assumption that these populations had the same age distribution as the standard population. The standard population was defined by us as the study population of all three middle-aged cohorts (2001, 2011 and 2017).
The frequency of PMCS care for persons at the end of life (2017) was determined based on pooled data from the regions Münster and Coesfeld. This was calculated as the ratio of deaths with PMCS care to total deaths.
The statistical software package SPSS, version 25, was used to analyze the data.
Ethics committee approval
The study was submitted to the Ethics Committee of the Ruhr University Bochum (Germany) and approved after review. (Registration no. 17–6330).
A total of 38 954 death certificates were analyzed. The absolute number of deaths increased continuously over the years (11 963, 12 914, 14 077).
On average, women died at the age of 79.6 years and men at the age of 72.5 years. The mean age at death increased from 2001 to 2017 in women by 2.6 years, in men by 4.7 years. The proportion of persons aged over 80 years increased from 42.5% (2001) to 54.3% (2017) (Table 3).
Place of death
The hospital was the most common place of death, accounting for more than 50% of all deaths. In the place of death ranking, the home environment rank second with percentages between 27.8% (2001) and 21.3% (2017), while the nursing home ranked third with percentages between 13.1% (2001) and 20.4% (2017) (age-standardized rates). The trend over time showed a decrease in the frequency of deaths at home and in hospital and an increase in deaths in palliative care units, hospices and nursing homes (Table 4). The analysis of the frequency of the place of deaths based on raw data differed only slightly from the age-adjusted analysis (eTabelle). Women died more frequently in nursing homes, while men died more frequently at home or in hospital (Figure1 a, b).
Utilization of PMCS care among the deceased
Of the 5887 deaths in the city of Münster and the district of Coesfeld in 2017, 1694 (28.8% [95% CI: (27.6–30.0%)]) received PMCS care at the end of life. Figure 2 depicts the deaths who received PMCS care, stratified by age and place of death. A corresponding breakdown by gender is shown in the eFigure.
The hospital is the most common place of death, accounting for more than half of all deaths. In 2017, only 21.3% of deaths occurred at home, while 51.8% occurred in hospital and 6.2% in a palliative care unit, 4.8% in a hospice, 20.4% in a nursing home, and 1.5% in other places. In the period from 2001 to 2017, less people died at home or in hospital, while more people died in a palliative care unit, hospice, or nursing home. One fourth of the people who died (2017) in the city of Münster and the district of Coesfeld received outpatient PMCS care at the end of life.
Thus, our study data are in line with place of death data from other industrialized countries which also identify the hospital as the most common place of death (6, 8, 9, 10, 11, 12, 13, 14, 15). In addition, the data reveal a continuous increase in age of death for both sexes, which is very likely to be understood in the context of demographic change. The proportion of persons who died at age ≥ 80 years increased from 42.5% (2001) to 54.3% (2017). The likelihood of comorbidities, frailty and nursing care needs increases with increasing age; at the same time, the risk of dementia increases (22). This, of course, has an effect on the place of deaths. The percentage of those who died in a nursing home was 13.1% in 2001 and then increased markedly to 20.4% in 2017. Women died more frequently in a nursing home, while men died more frequently at home or in hospital. This observation is explained by gender differences in life expectancy (18).
While the majority of the surveyed persons (2, 3, 4, 5) wished to die at home, only one in four to five persons actually died in their own residence. Here, a steady downward trend was noted. Social changes, directed away from the care-providing (extended) family towards an increasing number of people living alone, may have been a key driver of this development (23). While most persons in need of care are still being looked after by family members in a private setting, the general social conditions have changed. Declining birth rates, increasing female employment and larger distances between the residence of adult children and that of their parents are just some of the factors which make it more difficult for family members to provide care in a home setting (24, 25).
Hospices and especially palliative care units were significantly more frequently identified as places of death. While in 2001 palliative care units were non-existent and hospices existed only in cities, the availability of these care facilities had increased by 2017 to 58.8 palliative care beds and 38.7 hospice beds per 1 million inhabitants. Thus, the demand estimate of the European Association for Palliative Care (EAPC) of 40–50 palliative care beds and 40–50 hospice beds per 1 million inhabitants was exceed and not met, respectively (26). The number of palliative care units was found significantly increased, especially in the two university cities. The high density of hospitals with numerous oncology departments may have greatly contributed to this development. After 2011, by contrast, the regional expansion of hospice beds came to a halt.
Despite the fact that the primary mission of hospitals is to cure patients, hospitals ranked first by a wide margin in the distribution of place of death. Information about the morbidity profile of patients who died in hospital is not available for Germany. However, the hospital patient population is likely to be very heterogeneous, including, among others, trauma patients, patients with other acute emergencies, patients with complicated courses of disease, as well as patients with incurable disease wishing to receive further treatment. In many cases, the disease no longer allows patients to decide on the place of death themselves. Overall, a slight downward trend in the number of in-hospital deaths was noted which is certainly linked to an improved service offering by hospices and palliative care units, but may also be related to cost pressure in the inpatient healthcare sector.
One fourth of the people who died in the city of Münster and the district of Coesfeld in 2017 received outpatient PMCS care at the end of life. This finding validates the intention of the general and specialized palliative care contract in Westphalia to establish a broad outpatient palliative care offering (21). PMCS care was received by 45.3% of all persons who died at home and 51.8% of all persons who died in a nursing home. Of the hospice patients, 90.5% died receiving PMCS care. This is likely to be due to mature network structures. The high rates of PMCS care provided show how labor-intensive the provision of outpatient palliative care has become in Westphalia (27). These rates also point to the limitations of this model of care, which requires extensive human resources. The qualified palliative medicine physicians of the PMCS are mostly community-based medical care providers, engaged in the PMCS on a part-time basis. It remains to be seen to what extent the development of a nationwide specialized palliative care framework contract will lead to structural changes in the care model in Westphalia.
Strengths and weaknesses
With 38 954 analyzed death certificates, this study is now the largest German place of death study. Since the analysis was based on selected regions in Westphalia, its results are not representative for Germany. The validity of the place of death information was confirmed. Almost all death certificates of hospitals had an institute stamp on them; all hospice death certificates and most of the nursing home death certificates were identifiable by their respective postal address. Hospital deaths in palliative care units could not always be differentiated. In unclear cases, the hospitals were contacted and a pseudonymized plausibility check performed. In isolated cases, it was found that the lack of an institute address (mainly of a nursing home) resulted in the misclassification of the death as a death at home. Because of this, the number of deaths at home might be slightly overestimated and the number of deaths in institutions—especially nursing homes—slightly underestimated. The pseudonymized data do not provide information on the duration and intensity of the PMCS care provided. Only two palliative medicine consultation services (Münster, Coesfeld) participated in this study.
Conflict of interest
The authors declare that no conflict of interest exists.
Manuscript received on 22 September 2020; revised version accepted on 18 January 2021.
Translated from the original German by Ralf Thoene, MD.
PD Dr. med. Burkhard Dasch, MSE, MPH
Zentrale Einrichtung Palliativmedizin
Albert-Schweitzer-Campus 1, Gebäude W30
48149 Münster, Germany
Cite this as:
Dasch B, Zahn PK: Place of death trends and utilization of outpatient palliative care at the end of life—analysis of death certificates
(2001, 2011, 2017) and pseudonymized data from selected palliative medicine consultation services (2017) in Westphalia, Germany.
Dtsch Arztebl Int 2021; 118: 331–8. DOI: 10.3238/arztebl.m2021.0124
Clinic for Anesthesiology, Intensive Care Medicine and Acute Pain Therapy, BG University Hospital Bergmannsheil, Bochum, Germany: Prof. Dr. med. Peter K. Zahn
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