Specialized Outpatient Palliative Care­Clinical Course and Predictors for Living at Home Until Death

BACKGROUND: Specialized outpatient palliative care (SOPC) is an important component of the palliative medicine care concept in Germany. Its purpose is to improve the out-of-hospital care of patients who cannot be adequately cared for by their primary care physicians and in the setting of general outpatient palliative care (GOPC). METHODS: In this retrospective analysis of anonymized routine treatment data, we analyzed the characteristics of SOPC patients overall and with specific diseases, and depicted them both numerically and graphically. We also carried out a regression analysis of the factors affecting whether or not patients will be able to die in a home environment. RESULTS: The analysis included data from 14 460 patients who were treated by 14 different SOPC teams in the North Rhine area of Germany in 2017 and 2018. The majority of patients who died were able to live at home until death (85.9%); only a small percentage died as inpatients (7.7%). The symptom burden shortly before death was less than at the beginning of treatment. The factors displaying a statistically significant association with dying at home were: more advanced age (aOR 0.96; 95% CI: [0.95; 0.96]), female sex (aOR 0.85; 95% CI: [0.74; 0.98]), and house calls at night (aOR 0.60; 95% CI: [0.51; 0.71]). CONCLUSION: SOPC met its declared objectives of limiting distressing symptoms and enabling patients to live at home until death.

Communication, Coordination, and Security for People with Multiple Sclerosis (COCOS-MS): a randomised phase II clinical trial protocol.

INTRODUCTION: Patients with multiple sclerosis (MS) have complex needs that range from organising one's everyday life to measures of disease-specific therapy monitoring to palliative care. Patients with MS are likely to depend on multiple healthcare providers and various authorities, which are often difficult to coordinate. Thus, they will probably benefit from comprehensive cross-sectoral coordination of services provided by care and case management (CCM). Though studies have shown that case management improves quality of life (QoL), functional status and reduces service use, such benefits have not yet been investigated in severely affected patients with MS. In this explorative phase ll clinical trial, we evaluated a CCM with long-term, cross-sectoral and outreaching services and, in addition, considered the unit of care (patients and caregivers). METHODS AND ANALYSIS: Eighty patients with MS and their caregivers will be randomly assigned to either the control (standard care) or the intervention group (standard care plus CCM (for 12 months)). Regular data assessments will be done at baseline and then at 3-month intervals. As primary outcome, we will evaluate patients' QoL. Secondary outcomes are patients' treatment-related risk perception, palliative care needs, anxiety/depression, use of healthcare services, caregivers' burden and QoL, meeting patients' and caregivers' needs, and evaluating the CCM intervention. We will also evaluate CCM through individual interviews and focus groups. The sample size calculation is based on a standardised effect of 0.5, and one baseline and four follow-up assessments (with correlation 0.5). Linear mixed models for repeated measures will be applied to analyse changes in quantitative outcomes over time. Multiple imputation approaches are taken to assess the robustness of the results. The explorative approach (phase ll clinical trial) with embedded qualitative research will allow for the development of a final design for a confirmative phase lll trial. ETHICS AND DISSEMINATION: The trial will be conducted under the Declaration of Helsinki and has been approved by the Ethics Commission of Cologne University's Faculty of Medicine. Trial results will be published in an open-access scientific journal and presented at conferences. TRIAL REGISTRATION NUMBER: German Register for Clinical Studies (DRKS) (DRKS00022771).

Factors influencing length of survival in ambulatory palliative care - a cross sectional study based on secondary data.

BACKGROUND: Quality of life and patient self-determination are key elements in successful palliative care. To achieve these goals, a robust prediction of the remaining survival time is useful as it can provide patients and their relatives with information for individual goal setting including appropriate priorities. The Aim of our study was to assess factors that influence survival after enrollment into ambulatory palliative care. METHODS: In this cross-sectional, multicenter study (n = 14 study centers) clinical records of all palliative care patients who were treated in 2017 were extracted and underwent statistical analysis. The main outcome criterion was the association of survival time with clinical characteristics such as age, type of disease, symptoms and performance status. RESULTS: A total of 6282 cases were evaluated. Median time of survival was 26 days (95 % CI: 25-27 days). The strongest association for an increased hazard ratio was found for the following characteristics: moderate/severe weakness (aHR: 1.91; 95 % CI: 1.27-2.86) Karnofsky score 10-30 (aHR: 1.80; 95 % CI: 1.67-1.95), and age > 85 (aHR: 1.50; 95 % CI: 1.37-1.64). Surprisingly, type of disease (cancer vs. non-cancer) was not associated with a change in survival time (aHR: 1.03; 95 % CI: 0.96-1.10). CONCLUSIONS: In this cross-sectional study, the most relevant predictor for a short survival time in specialized ambulatory palliative care was the performance status while type of disease was irrelevant to survival.

Care of terminally ill patients and palliative sedation. / Begleitung Sterbender und Stellenwert der palliativen Sedierung.

Caring of very sick and dying people at home during their last phase in life presents a maximum challenge for patients, their family, relatives and the palliative care team. Dying stages occur differently in each patient and the palliative care team must react accordingly. Despite all monitoring and sufficient treatment for the patient, symptoms can create a highly stressful situation. After careful consideration in these cases, a palliative sedation can be considered. Guidelines of German and European societies describe indications, as well as the implementation. A highly complex casuistics demonstrates possibilities and limits of palliative sedation

Outpatient palliative care ­ a multiprofessional challenge. / Eine multiprofessionelle Herausforderung.

Life-threatening illness and the dying of a person presents a complex and particularly burdensome challenge for the person affected as well as for their relatives. This also applies to the professionals involved in caring and supporting the terminally ill patient. For this reason, palliative care has become a pioneer of a networked multi-professional and multi-perspective thinking and acting. In hardly any other medical field so many different professional groups and specialized disciplines work together in such an intensive manner. The rapid supply of drugs is an essential part of the specialized outpatient palliative care concept (SAPV). This cooperation is exemplified in this article.

Pharmacists as part of an outpatient palliative care team. / Individuelle Rezepturen und Rund-um-die-Uhr-Versorgung Die Apotheke als Teil des Palliative-Care-Teams

Pharmacists are an integral factor in palliative medical care, especially in the context of specialised outpatient palliative care (in Germany "SAPV"). As part of a multi professional team, pharmacists take care of patients especially in complex supply situations. The drug therapy is always checked for side-effects and interactions, and the medication is adjusted to application methods which are still possible (e. g. subcutaneous administration or administration via gastro-intestinal probes). A 24/7 supply of urgently needed medicines needs to be ensured and clinical nutrition must be suited to the real needs of the patient. Prompt aseptic manufacturing of analgesic pumps and the supply of medical devices is a priority of regional specialised pharmacies, whilst the basic support can be provided by all pharmacies who wish to engage in this ethically demanding field.