Specialized Outpatient Palliative Care—an Interim Assessment

Editorial to accompany the article: “Specialized Outpatient Palliative Care—Clinical Course and Predictors for Living at Home Until Death” by Johannes Just et al. in this issue of Deutsches Ärzteblatt International

The individual entitlement to specialized outpatient palliative care (SOPC) was introduced in 2007 with the purpose of strengthening the independence and quality of life of severely ill patients at the end of life and enabling home care for patients with complex physical and psychosocial problems, based on a multi-professional collaboration in partnership with the primary care providers (1, 2). With numerous studies repeatedly showing high rates of up to 95% of people in Germany wishing to die at home in their personal environment, SOPC was established since the day-to-day provision of care frequently failed to achieve this goal in patients with complex physical and psychosocial problems (3).

Encouragingly high rate of care

Taking the state of North Rhine-Westphalia as an example, the study of Just et al. examined in how many patients enrolled in an SOPC this goal of providing care at home until death can actually be realized and which factors influence the ability to achieve this outcome (4). In their retrospective data analysis of more than 14 000 SOPC data of patients of 14 different service providers, they showed that SOPC actually accomplished to provide care in a home environment at the encouragingly high rate of 86% of people (4). In addition, they showed that SOPC-supported patients experienced alleviation of their symptom burden in the course of treatment (4); thus, they were able to demonstrate a further SOPC quality indicator of high clinical relevance. Age and gender of the patients as well as the utilization of SOPC at night were defined as relevant risk factors (4) which allow to enhance day-to-day care by intensified monitoring and greater support for patients with „risk constellations” for an increased probability that dying at home will still not be achieved.

With regard to the proportion of about 15% of patients who could not be treated in their home environment until death despite SOPC, it should be emphasized that this does not represent a “failure” of the care system, but that in the course of severe progressive diseases there is naturally always a certain, fortunately small, proportion of such aggressive clinical courses that even the best SOPC inevitably reaches its limits. Likewise, it should be perfectly legitimate that, in individual cases, family caregivers only understand what it really means to support the dying process at home when they experience it, and only then realize that they are not up to the task and that a change in care is therefore required. Precisely in these cases, it is crucial to avoid any mention of a lack of success of the SOPC in view of any long-term distress and feelings of guilt on the part of the family caregivers. Instead, the focus should be on how much valuable time was still being spent together at home. I believe this is also a valuable goal of SOPC which, however, is often lost sight of in this context.

Reduction of aggressive interventions

Likewise, a further important goal of SOPC is to reduce aggressive interventions during the final days of life. For example, a recent study has shown that in an additive SOPC setting, death in hospital, intensive treatments and hospital stays, chemotherapy or placement of a tube were significantly less common during the final days compared to primary care alone—both in cancer and non-cancer patients (5). From the perspective of those affected, i.e. of the patients and their family caregivers, successful SOPC does not only offer adequate symptom control, but also perceived reliable availability, patient-centeredness, especially with regard to the sharing of information, structural functioning, for example in the collaboration of all contributing service providers, the involvement of relatives, respect for individuality, and direct communication, also with regard to the imminent death (6, 7).

Furthermore, the study of Just et al. was not designed to answer the question of how large the proportion of patients with a need for SOPC was during the study period who actually received SOPC. Thus, it remains undetermined how many people could not be cared for at home until death, because they were not referred to SOPC in the first place.

An earlier analysis performed in the federal state of Rhineland-Palatinate during the pre-SOPC era showed that at that time about 60% of patients died where they had wished to die (3). This was all the more likely if they lived in an urban setting and had nonworking relatives with whom they were living in the same household (3). The extent to which this situation has been improved to date by the widespread establishment of SOPC remains unknown for this region.

Further national standardization required

In 2011, a study reported a need for palliative medical care in about 20% of the dying in the Westphalia region; this need was met in just over half of these people (8). A more recent study from 2016 showed the provision of palliative care in 33% of all deceased persons nationwide in Germany based on the cohort of a National Health Insurance —however, there were large variations across the nation (26% Bremen, 41% Bayern) (9). At the national level, however, the funding (9) and structural models of palliative care (10) continue to vary, so that, unfortunately, the results presented by Just et al. cannot be fully applied to all regions of Germany. Thus, further national standardization of integrated SOPC, its structures and care goals remains of high importance.

Conflict of interest statement
Prof. Oechsle has received lecture and presentation fees from the Hamburg Cancer Society (Hamburger Krebsgesellschaft e. V.) and the German Cancer Aid (DKH, Deutsche Krebshilfe e. V.)

Manuscript received on 27 March 2022; revised version accepted on 5 April 2022

Translated from the original German by Ralf Thoene, MD.

Corresponding author
Prof. Dr. med. Karin Oechsle
W3-Stiftungsprofessur für Palliativmedizin
mit Schwerpunkt Angehörigenforschung
Palliativmedizin, II. Medizinische Klinik,
Universitätsklinikum Hamburg-Eppendorf
Martinistraße 52, 20246 Hamburg, Germany

Cite this as:
Oechsle K: Specialized outpatient palliative care—an interim assessment. Dtsch Arztebl Int 2022; 119: 325–6. DOI: 10.3238/arztebl.m2022.0192

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