Palliative (farewell) culture in shared housing arrangements : The perspective of everyday nursing practice.

BACKGROUND: Shared housing arrangements (SHA) are alternatives to long-term care facilities for care-dependent people. The collective perspective of nursing professionals working in SHA in dealing with death and dying is missing in recent studies. This study aimed to investigate the perspective of professionals concerning a palliative (farewell) culture in SHA. METHODS: In this study two group discussions were conducted with nurses and nursing assistants working in SHA. Data were analyzed using the documentary method, with the aim of working out the professional orientation framework concerning a collective palliative culture. RESULTS: Nurses enable a palliative (farewell) culture. This leads to the fact that hospice services are not used in these SHA. The distance to relatives as well as a short dying process or incomplete dying support can make a successful palliative culture difficult. Depending on the conscious assumption of responsibility for a palliative culture in the nursing concept of SHA, death and dying are discussed at an early stage with the relatives and care-dependent people. DISCUSSION: The constantly progressing palliative culture in SHA is based on nurses' experiences, general practitioners (GP) and relatives. The family carers' role is ambiguous. If they do what they are supposed to do from the professional nurses' point of view and are closely connected to the nurses, they are viewed positively and as enablers of a palliative culture. If family carers' responsibilities are not communicated and they are not in close contact with professional nurses, they are viewed as opponents of a palliative culture. The GPs are seen as enablers of a palliative culture in both discussions. A timely discussion on what might happen in the end of life phase, formalized or not, helps all involved groups to be prepared.

Hygiene management for long-term ventilated persons in the home health care setting: a scoping review.

BACKGROUND: Evidence and recommendations for hygiene management in home mechanical ventilation (HMV) are rare. In Germany, few regionally limited studies show poor hygiene management or a lack of its implementation. This scoping review of international literature identified the evidence in hygiene management for ventilated patients in the home care setting which has to be implemented for infection prevention and control. METHODS: A review of international literature was conducted in CINAHL, PubMed and Web of Science. The search focused on four key domains: HMV, hygiene management, home care setting, and methicillin-resistant Staphylococcus aureus (MRSA). Data of included studies were extracted using a data charting sheet. Extracted data were assigned to the categories (1) study description, (2) setting and participants, and (3) hygiene management. RESULTS: From 1,718 reviewed articles, n = 8 studies met inclusion criteria. All included studies had a quantitative study design. The approaches were heterogeneous due to different settings, study populations and types of ventilation performed. Regarding aspects of hygiene management, most evidence was found for infectious critical activities (n = 5), quality management for hygiene (n = 4), and training and education (n = 4). This review identified research gaps concerning kitchen hygiene, relatives and visitors of HMV patients, and waste management (n = 0). DISCUSSION: Overall evidence was rather scarce. Consequently, this review could not answer all underlying research questions. No evidence was found for measures in hygiene management relating to ventilated patients' relatives. Evidence for kitchen hygiene, waste management and interaction with relatives is available for inpatient care settings. However, this may not be transferable to outpatient care. Binding legal requirements and audits may help regulate the implementation of HMV hygiene measures. CONCLUSION: Infection control programmes included qualified personnel, hygiene plans, and standards for MRSA and multidrug-resistant organisms (MDRO). The appropriateness of hygiene management measures for outpatient care is the basis for their application in practice.

Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients.

Progressive bulbar palsy (PBP) is a form of motoneuron disease and is widely classified as a subtype of amyotrophic lateral sclerosis (ALS) with a shorter time of survival and female predominance. In this retrospective case series of 14 patients with PBP, we focus on challenges in palliative care for this patient cohort, including symptom control, gastrostomy, non-invasive ventilation, and end-of-life phase. We show that rapid physical decline at the end of life is associated with bronchopulmonary infection and excessive oral secretion leading to a high level of symptom burden. Early and regular advance care planning discussions with a focus on oral secretion management with patients and caregivers are crucial.

Education on palliative care for Parkinson patients: development of the "Best care for people with late-stage Parkinson's disease" curriculum toolkit.

BACKGROUND: Palliative care education among all stakeholders involved in the care of patients with late-stage Parkinson's disease is not adequate. In fact, there are many unmet educational and training needs as confirmed with a targeted, narrative literature review. METHODS: To address these needs we have developed the "Best Care for People with Late-Stage Parkinson's Disease" curriculum toolkit. The toolkit is based on recommendations and guidelines for training clinicians and other healthcare professionals involved in palliative care, educational material developed in recent research efforts for patients and caregivers with PD and consensus meetings of leading experts in the field. The final version of the proposed toolkit was drafted after an evaluation by external experts with an online survey, the feedback of which was statistically analysed with the chi-square test of independence to assess experts' views on the relevance and importance of the topics. A sentiment analysis was also done to complement statistics and assess the experts positive and negative sentiments for the curriculum topics based on their free text feedback. RESULTS: The toolkit is compliant with Kern's foundational framework for curriculum development, recently adapted to online learning. The statistical analysis of the online survey, aiming at toolkit evaluation from external experts (27 in total), confirms that all but one (nutrition in advanced Parkinson's disease) topics included, as well as their objectives and content, are highly relevant and useful. CONCLUSIONS: In this paper, the methods for the development of the toolkit, its stepwise evolution, as well as the toolkit implementation as a Massive Open Online Course (MOOC), are presented. The "Best Care for People with Late-Stage Parkinson' s disease" curriculum toolkit can provide high-quality and equitable education, delivered by an interdisciplinary team of educators. The toolkit can improve communication about palliative care in neurological conditions at international and multidisciplinary level. It can also offer continuing medical education for healthcare providers.

Advanced Nursing Practice in Austria under consideration of outcome measurement.

BACKGROUND: Internationally, Advanced Practice Nurses (APN) are associated with improvements when measuring results in health care. Advanced Nursing Practice (ANP) refers to an extended nursing care with the aim of meeting the changing conditions in health care systems by providing evidence-based practice. APN outcomes are the endpoints of nursing interventions based on clinical experience, scientific knowledge, and practical skills. Due to the challenges in health care systems, Advanced Practice Nurses have become well established internationally in various fields. PROBLEM: In Austria, the first nurses are currently trained in Advanced Nursing Practice on a master's level according to the International Council of Nurses core curriculum (ICN). However, national implementation and evaluation strategies are still missing. OBJECTIVE: The aim of this short report is (i) to show the current situation of APNs in Austria, and (ii) to underline the importance of measuring APN outcomes in implementing this role for future developments in health care. METHOD: A literature search was conducted in CINAHL (Cumulative Index to Nursing and Allied Health), PubMed, and the Cochrane Library in the period 09/2019 to 01/2020. RESULTS: With the help of APNs and coordinated, holistic, patient-centered care, a higher quality of care for different patient groups is clearly evident. The cost-effectiveness and the positive experience of both patients and nursing staff have been demonstrated in international studies. In particular, the guidance and educational skills of APNs have been shown to improve health outcomes in vulnerable population groups. CONCLUSION: With regard to the implementation of APNs in the health care system, more focus is needed on the measurement of outcomes in nursing research. Outcome research has been shown to help identify the unique effect of APNs in patient care and to highlight the health-related improvements through Advanced Nursing Practice for health policy and further developments in the health care system.

Spiritual care as an integrated approach to palliative care for patients with neurodegenerative diseases and their caregivers: a literature review.

A literature review of the PubMed and Web of Science was conducted to identify peerreviewed publications on this topic. Additional search was carried out using Google Scholar. This article reflects on the current state of art in spiritual care as an integrated palliative care approach for patients with neurodegenerative diseases and their caregivers. It proposes developing belief and value based care models for people with life-limiting conditions and their caregivers to prevent health related suffering.

Telemedicine in Palliative Care: Implementation of New Technologies to Overcome Structural Challenges in the Care of Neurological Patients.

Telemedicine provides a possibility to deal with the scarcity of resources and money in the health care system. Palliative care has been suggested to be appropriate for an increasing number of patients with neurodegenerative disorders, but these patients often lack care from either palliative care or neurology. Since palliative care means a multidisciplinary approach it is meaningful to use palliative care structures as a basis. There exists no systematic access to neurological expertise in an outpatient setting. A successful link of two existing resources is shown in this project connecting the Department of Neurology of an University Hospital with specialized outpatient palliative care (SPC) teams. A videocounselling system is used to provide expert care for neurological outpatients in a palliative setting. Methods: A prospective explorative single arm pilot trial was implemented to provide a mobile telesystem for 5 SPC teams. The opportunity was given to consult an expert in neuropalliative care at the specialized center in the hospital (24/7). Semistructured interviews were conducted with the physicians of the SPC teams after a trial duration of 9 months. Results: Our data provides strong evidence that the technical structure applied in this project allows a reasonable neurological examination at distance. Qualitative interviews indicate a major impact on the quality of work for the SPC teams and on the quality of care for neurological patients. Conclusion: The system proves to be useful and is well accepted by the SPC teams. It supplies a structure that can be transported to other disciplines.

Using tube feeding and levodopa-carbidopa intestinal gel application in advanced Parkinson's disease.

The inability to achieve adequate nutrition and weight loss are serious problems for patients with advanced Parkinson's disease (PD). To ensure the optimal intake of nutrition and fluids and to administer levodopa-carbidopa intestinal gel (LCIG) (which patients need to increase or maintain their mobility as long as possible), different artificial feeding tubes can be used. Although percutaneous endoscopic gastrostomy (PEG) tubes are frequently used in medical practice, there is little research that addresses key questions, including if and when to administer artificial fluids, nutrition and/or LCIG via tubes. Weight gain through tube feeding is only possible for some patients; nurses should keep in mind that tube insertion and feeding may lead to frequent adverse events. Administering LCIG via tubes is usually advisable as it seems to enhance patients' mobility and therefore has positive outcomes in terms of the quality of life of patients and their families ( Lim et al, 2015 ). The authors aimed to examine the use and consequences of providing nutrition and LCIG via gastrostomy tubes in PD patients with advanced disease.

A Pilgrim's Journey-When Parkinson's Disease Comes to an End in Nursing Homes.

Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.

Implementing an advance care planning program in German nursing homes: results of an inter-regionally controlled intervention trial.

BACKGROUND: Advance Care Planning (ACP) is a systematic approach to ensure that effective advance directives (ADs) are developed and respected. We studied the effects of implementing a regional ACP program in Germany. METHODS: In a prospective, inter-regionally controlled trial focusing on nursing homes (n/hs), we compared the number, relevance and validity of new ADs completed in the intervention region versus the control region. Intervention n/h residents and their families were offered professional facilitation including standardized documentation. RESULTS: Data from 136 residents of three intervention n/hs were compared with data from 439 residents of 10 control n/hs over a study period of 16.5 months. In the intervention region, 49 (36.0%) participating residents completed a new AD over the period of the study, compared to 18 (4.1%) in the control region; these ADs included 30 ADs by proxy in the intervention region versus 10 in the control region. Proxies were designated in 94.7% versus 50.0% of cases, the AD was signed by a physician in 93.9% versus 16.7%, and an emergency order was included in 98.0% versus 44.4%. Resuscitation status was addressed in 95.9% versus 38.9% of cases (p<0.01 for all of the differences mentioned above). In the intervention region, new ADs were preceded by an average of 2.5 facilitated conversations (range, 2­5) with a mean total duration of 100 minutes (range, 60­240 minutes). CONCLUSION: The implementation of an ACP program in German nursing homes led, much more frequently than previously reported, to the creation of advance directives with potential relevance to medical decision-making. Future research should assess the effect of such programs on clinical and structural outcomes.