[End-of-life care in a rural small-town region in Lower Saxony: a retrospective cross-sectional analysis based on routinely collected general practice data]

Abstract

Introduction: Up to 90% of people at the end of life are in need of palliative care. The majority can be cared for within general outpatient palliative care (AAPV) by general practitioners. Previous studies have described outpatient palliative care to fall short behind the estimated needs and to be initiated rather late in the health care process. Yet, little is known about the development of outpatient palliative care in recent years and about the parameters influencing its utilisation. Therefore, this study aimed to investigate the number and time of initiation for AAPV and specialised outpatient palliative care (SAPV) in a rural and small-town region in Lower Saxony on the basis of routinely collected general practice data. Furthermore, this study sought to estimate the influence of various parameters related to patients, practices and physicians on the provision of AAPV and SAPV.

Methods: All general practitioners (n=190) in two counties in Lower Saxony were invited to take part in the project "Optimal care at the end of life - OPAL" (Innovation Fund, 01VSF17028) between autumn 2018 and spring 2019. In the participating practices, clinical data pertaining to patients with statutory health insurance, who had died in the second or third quarter of 2018, were collected in pseudonymised form and analysed using selected indicators for end-of-life care. The number of hospital stays and the provision of AAPV and SAPV were the subject of the descriptive analyses. In order to take the cluster effect of the practices into account, mixed-model analyses were carried out.

Results: The data of 279 deceased patients (48% female; median age 82 years) from 31 general practices were analysed. In the last year of life, AAPV was provided for 78 deceased patients (28.0%) with a median onset of 20 days before death. 52 deceased patients (18.6%) received SAPV with a median onset of 28 days before death, respectively. In the last six months of life, 207 deceased patients (74.2%) were hospitalised at least once. The mixed-model analyses showed a greater probability of receiving AAPV (odds ratio (OR)=3.3) or SAPV (OR=3.2) in the last year of life for patients with oncological diseases. It was also shown that GPs with a higher value on the subscale practice organisation billed more AAPV (OR=1.4).

Discussion: The number of patients with SAPV is at least equivalent to the estimated needs known from the literature in both selected regions. In contrast, AAPV seems to be provided relatively rarely and rather late in the health care process. Relevant reasons for this may be the lack of concrete criteria for AAPV (e. g., ambiguities and competing codes for billing) as well as prognostic uncertainties of health care providers especially for patients with non-oncological diseases.

Conclusion: Strategies to further develop end-of-life care should especially strengthen the AAPV provided by general practitioners and focus on patients with non-oncological diseases.

Keywords: Allgemeinmedizin; Ambulante Versorgung; Claims data; Family practice; Health services research; Outpatient care; Palliative care; Palliativversorgung; Routinedaten; Versorgungsforschung.