[Precautionary planning at the end of life from a palliative care point of view]. / Vorsorgeplanung am Lebensende aus palliativmedizinischer Sicht.

What happens when you are no longer able to make medical decisions yourself? The constant increase in the number of people in need of care has led to the concept of advance care planning (ACP). This is a forward-looking, ongoing, and constantly reflective process of discussion regarding preferences and values for future medical and nursing treatments. ACP can sustainably improve the medical and nursing landscape as well as psychosocial care, so that people are treated according to their wishes, even if they can no longer be asked about their treatment wishes. The implementation strategy is dependent on this, as presented in studies. This also includes the financial support of such implementation projects, because only the talks alone, which are exclusively refinanced by §132g SGB V, do not lead to a cultural change regarding the importance of self-determination and dealing with living wills, as well as an improvement in treatment, care, and support for people in the health system.

"I Should at Least Have the Feeling That It [ ] Really Comes from Within": Professional Nursing Views on Assisted Suicide.

Background: Due to a decision by the German Federal Constitutional Court of February 26, 2020, it is currently possible in Germany to avail of assisted suicide. The ruling has given rise to a controversial debate within the professional community as well as in society in general. Within this debate, little attention has been given to the role of nursing staff in assisted suicide. However, international studies show that nurses play an important role in assisted suicide. Objective: The aim of this study is to assess the views and attitudes of nurses from different care settings in Germany toward assisted suicide. Design: A qualitative research design was chosen to capture the subjective experience of nursing staff on suicide assistance. This was analyzed using the grounded theory method. Methods: With the help of a semi-structured, narrative-generating interview guide, in which five case vignettes are integrated, 20 interviews were conducted with nursing professionals from different care settings throughout Germany. Results: The analyzed phenomenon shows that nursing professionals need to understand the desire to die for themselves. The individual life situation of the respective patient is decisive. The action strategy based on being able to tolerate the wish to die determines how intensively they want to be involved before, during, and after assisted suicide. For nurses, however, it is undisputed that it is their professional role to accompany the patient in their "existence" and thus also in the context of assisted suicide. Conclusion: In view of the future development of assisted suicide in Germany, it seems necessary to prepare nursing professionals for activities related to assisted suicide by means of a curricular offer. In addition, nursing professionals should be supported in forming their own attitude to the issue.

Effectiveness of a complex regional advance care planning intervention to improve care consistency with care preferences: study protocol for a multi-center, cluster-randomized controlled trial focusing on nursing home residents (BEVOR trial).

BACKGROUND: According to recent legislation, facilitated advance care planning (ACP) for nursing home (NH) residents is covered by German sickness funds. However, the effects of ACP on patient-relevant outcomes have not been studied in Germany yet. This study investigates whether implementing a complex regional ACP intervention improves care consistency with care preferences in NH residents. METHODS: This is a parallel-group cluster-randomized controlled trial (cRCT) with 48 NHs (≈ 3840 resident beds) between 09/2019 and 02/2023. The intervention group will receive a complex, regional ACP intervention aiming at sustainable systems redesign at all levels (individual, institutional, regional). The intervention comprises comprehensive training of ACP facilitators, implementation of reliable ACP processes, organizational development in the NH and other relevant institutions of the regional healthcare system, and education of health professionals caring for the residents. Control group NHs will deliver care as usual. Primary outcome is the hospitalization rate during the 12-months observation period. Secondary outcomes include the rate of residents whose preferences were known and honored in potentially life-threatening events, hospital days, index treatments like resuscitation and artificial ventilation, advance directives, quality of life, psychological burden on bereaved families, and costs of care. The NHs will provide anonymous, aggregated data of all their residents on the primary outcome and several secondary outcomes (data collection 1). For residents who have given informed consent, we will evaluate care consistency with care preferences and further secondary outcomes, based on chart reviews and short interviews with residents, surrogates, and carers (data collection 2). Process evaluation will aim to explain barriers and facilitators, economic evaluation the cost implications. DISCUSSION: This study has the potential for high-quality evidence on the effects of a complex regional ACP intervention on NH residents, their families and surrogates, NH staff, and health care utilization in Germany. It is the first cRCT investigating a comprehensive regional ACP intervention that aims at improving patient-relevant clinical outcomes, addressing and educating multiple institutions and health care providers, besides qualification of ACP facilitators. Thereby, it can generate evidence on the potential of ACP to effectively promote patient-centered care in the vulnerable population of frail and often chronically ill elderly. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04333303 . Registered 30 March 2020.

Mental and Physical Well-Being and Burden in Palliative Care Nursing: A Cross-Setting Mixed-Methods Study.

The working routines in palliative care nursing are associated with a variety of causes of stress with regional and setting-specific differences in Germany. This mixed-methods study aimed to investigate the mental and physical well-being among nurses in German palliative and hospice care and to gain a deeper understanding of procedural and structural aspects that may influence the mental and physical burden in palliative nursing care. The mixed-methods approach combined qualitative interviews, (n = 16) an online survey (n = 101), and subsequent data validation in a focus group (n = 6). Interview and focus group data were analysed using structured qualitative content analysis. Survey data were analysed using descriptive statistics and an explorative quantitative analysis. Moderate to very high levels of stress were reported across all settings, but were highest for nurses in specialized outpatient palliative care settings. Underlying causes of stress related to working conditions in the nursing profession across all palliative care settings were poor working hours, perceived inadequate remuneration, and high demands for documentation. To ensure sustainable high-quality palliative care, adaptations to working conditions that target causes of stress and burden in palliative care nurses are required.

[Health Care Planning for the Final Phase of Life - an Advance Care Planning Concept in Germany]. / Behandlung im Voraus Planen ­ ein «Advance Care Planning¼-Konzept für Deutschland.

Health Care Planning for the Final Phase of Life - an Advance Care Planning Concept in Germany Abstract. The international concept of Advance Care Planning (ACP) is a systematic and qualified communication process for people who want to talk about possible disease scenarios and their wishes for medical, nursing, psychosocial and spiritual care, and treatment for those scenarios, in the presence of their relatives and therapists. In Germany, section 132 g on health care planning for the last phase of life was stipulated in the Social Security Code Book (Sozialgesetzbuch) V as an insurance benefit of statutory health insurance funds (Gesetzliche Krankenversicherung) for certain patient groups, which reflects the ACP concept. An ACP concept that is geared towards the structures of the healthcare system in Germany has become known nationwide as "Behandlung im Voraus Planen" (BVP). As part of the BVP conversations, the individual wishes for future medical, nursing, and psychosocial treatments are recorded and discussed according to the principle of shared decision-making with residents of senior citizens' facilities or with disabled people in cantres for integration assistance. These wishes can be recorded in detail in a document such as an advance directive. Specially trained persons from the medical and non-medical professional groups - such as nurses, social workers, curative educator therapists - can hold these BVP conversations. For this purpose, further training which follows a predefined core curriculum of the GKV-Spitzenverband must be successfully completed.

"I can't get it into my head that I have cancer "-A qualitative interview study on needs of patients with lung cancer.

BACKGROUND: Caring for patients with advanced lung cancer is of high relevance in different clinical settings. Lung cancer is among the most common causes of death from malignant neoplasms worldwide; with increasing prevalence and mortality. AIM: To get a better understanding of individual patients' needs, exploring the experiences and meaning of living with advanced lung cancer at the end of life, and to develop strategies for improving patient-centred care in Germany. DESIGN: Qualitative explorative interview study with patients, using grounded theory. SETTING/PARTICIPANTS: A sample of 17 adults living with advanced lung cancer in Lower Saxony/Germany was recruited in two university hospitals. Patients were asked to tell of their experiences of living with advanced lung cancer. The emphasis of this study was the period of palliative tumour therapy. RESULTS: The main phenomenon of living with advanced lung cancer is the feeling of having to redefine one's own existence, such as social roles within and outside the family. The diagnosis trigger powerlessness, which can lead to information passivity, followed by acceptance of aggressive tumour treatment. Patients perceive a high degree of psychological and social stress, without being able to express this. There is a lack of regular appropriate psychosocial care accompanying chemotherapy. Patients ascribe their physical suffering to the side effects of tumour treatment, which may trigger a desire to die. Finally, patients tend to hide their individual needs, even when asked. CONCLUSIONS: Regarding the patients' needs, greater emphasis must be placed on psychosocial care as part of the biopsychosocial model to adequately consider the patients' concerns. Assessments can be helpful to enhance communication at an early stage across all professions into the multi-professional therapy.

Meaning of living with severe chronic obstructive lung disease: a qualitative study.

OBJECTIVES: To explore what it means for patients to live with chronic obstructive pulmonary disease (COPD) as an incurable and constantly progressing disease. DESIGN: Qualitative longitudinal study using narrative and semistructured interviews. This paper presents findings of the initial interviews. Analysis using grounded theory. SETTING: Lung care clinics and community care in Lower Saxony, Germany. PARTICIPANTS: 17 patients with advanced-stage COPD (Global Initiative for Chronic Obstructive Lung Disease (GOLD) III/IV). FINDINGS: Analysis shows that these patients have difficulties accepting their life situation and feel at the mercy of the disease, which could be identified as a core-experienced phenomenon. Over a long period of time, patients have only a vague feeling of being ill, caused by uncertain knowledge, slow progress and doubtful attribution of clinical symptoms of the disease (causal conditions). As an action strategy, patients try to maintain daily routines for as long as possible after diagnosis. Both effective standard and rescue medication, which helps to reduce breathlessness and other symptoms, and the feeling of being faced with one's own responsibility (intervening conditions) support this strategy, whereby patients' own responsibility is too painful to acknowledge. As a consequence, patients try to deny the threat to life for a long period of time. Frequently, they need to experience facing their own limits, often in the form of an acute crisis, to realise their health situation. The experience of the illness is contextualised by a continuous increase in limited mobility and social isolation. CONCLUSION: In order to help patients to improve disease awareness, to accept their life situation and to improve their reduced quality of life, patients may benefit from the early integration of palliative care (PC), considering its multiprofessional patient-centred and team-centred approach. Psychological support and volunteer work, which are relevant aspects of PC, should be appropriate to address psychosocial needs. More research is needed to evaluate how patients could benefit from early PC.