Facing life-threat during youth: a qualitative study on challenges, coping, and needs among adolescents and young adults with cancer.

PURPOSE: While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases. METHODS: Face-to-face in-depth interviews were conducted with patients who were 18-39 years old at diagnosis. The interviews took place 2-5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs. CONCLUSION: AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number DRKS00030277; September 27, 2022 (German Clinical Trials Register).

European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Inpatient generalist palliative care during the SARS-CoV-2 pandemic - experiences, challenges and potential solutions from the perspective of health care workers.

BACKGROUND: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. METHODS: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. RESULTS: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. CONCLUSION: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals.

Development of a Brief Cognitive and Behavioral Intervention for the Management of Episodic Breathlessness-A Delphi Survey With International Experts.

CONTEXT: Episodic breathlessness is characterized by a severe worsening of breathlessness intensity that goes beyond usual fluctuations. Episodes are usually short; therefore, nonpharmacological strategies (cognitive and behavioral) seem most promising to be beneficial. Which strategies-delivered separately or in combination-might be most effective and feasible remains unclear. OBJECTIVES: The Delphi survey selects and determines different nonpharmacological strategies for coping with episodic breathlessness to develop a brief cognitive and behavioral intervention for the management of episodic breathlessness. METHODS: Using an online Delphi survey comprising three rounds, international, multidisciplinary experts in breathlessness summarized and determined cognitive and behavioral strategies. The a priori target agreement for close-ended questions was 70%. RESULTS: Experts (n = 41/87; n = 45/85; n = 36/85) agreed on 15 of the 31 cognitive and behavioral strategies. Based on the panellists' opinion, the final version of the cognitive and behavioral intervention comprised the following characteristics: individually tailored intervention, a high proportion of communication, short duration, the involvement of carers, and use of the Breathing, Thinking, Functioning Model of Spathis et al. Consensus upon the delivery of the subsequent strategies within the intervention was reached: handheld fan, forward lean, diaphragmatic breathing, distraction, pursed lips breathing, long breaths out, and relaxation training. CONCLUSION: Using the consented nonpharmacological strategies, a brief cognitive and behavioral intervention was developed that balances between individualization and standardization of the intervention.

[Palliative Care Teams in the German Comprehensive Cancer Centers]. / Palliativdienste in den deutschen onkologischen Spitzenzentren.

BACKGROUND: A palliative care team is recognized as a quality indicator in the consultation and care of patients with a tumor disease and is used nationally (92 %) in the National Cancer Institutes, model of the German Comprehensive Cancer Center (CCC). This begs the question of how palliative care teams are presently integrated into the CCCs. METHOD: From July to August 2017, a paper-based quantitative survey of 16 locations of the CCCs, supported to that date, gathered information on the existence, personnel situation, use and prospects of a specialized inpatient palliative care service. The survey was addressed to the heads of the palliative medical units of the CCCs. The data were evaluated in SPSS (frequency, median, mean, range). RESULTS: Fifteen CCCs took part in the survey (response 94 %). Thirteen of the fifteen CCCs have a service that also treats palliative patients. Twelve of thirteen CCCs of these are attainable during regular working hours (8a. m.-4 p. m. on weekdays). All services are staffed by physicians, additional eleven are staffed by nurses. Seven services are besides physicians and nurses joined by other professions. In 2016, 4482 median co-treatments were provided by the services, 80 % of these as additional charges without revenue and without codable OPS. In 2017, five centers plan to charge ZE 2017-133, two centers ZE 60 and three centers both intend to charge ZE 2017-133. CONCLUSIONS: Services for palliative patients exist generally in the German CCCs, but only half of them satisfy the condition of multi-professionality required for the fulfillment of the german guidelines. The new surcharge introduced in 2017, which can be charged on an hourly basis, could create improvements in this regard and contribute to cost recovery. Thus, contrary to the previous arrangement, essential and reasonable performances with a time of treatment of less than seven days can be charged.

Integrating Palliative Care Into Comprehensive Cancer Centers: Consensus-Based Development of Best Practice Recommendations.

BACKGROUND: International associations admit that specialized palliative care (SPC) is an obvious component of excellent cancer care. Nevertheless, gaps in integration at the international level have been identified. Recommendations for integrating SPC in clinical care, research, and education are needed, which are subject of the present study. MATERIALS AND METHODS: A Delphi study, with three written Delphi rounds, including a face-to-face-meeting with a multiprofessional expert panel (n = 52) working in SPC in 15 German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid was initiated. Initial recommendations are built on evidence-based literature. Consensus was defined in advance with ≥80% agreement based on the question of whether each recommendation was unambiguously formulated, relevant, and realizable for a CCC. RESULTS: A total of 38 experts (73.1%) from 15 CCCs performed all three Delphi rounds. Consensus was achieved for 29 of 30 recommendations. High agreement related to having an organizationally and spatially independent palliative care unit (≥6 beds), a mobile multiprofessional SPC team, and cooperation with community-based SPC. Until round 3, an ongoing discussion was registered on hospice volunteers, a chair of palliative care, education in SPC among staff in emergency departments, and integration of SPC in decision-making processes such as tumor boards or consultation hours. Integration of SPC in decision-making processes was not consented by a low-rated feasibility (76.3%) due to staff shortage. CONCLUSION: Recommendations should be considered when developing standards for cancer center of excellence in Germany. Definition and implementation of indicators of integration of SPC in CCCs and evaluation of its effectiveness are current and future challenges. IMPLICATIONS FOR PRACTICE: General and specialized palliative care (SPC) is an integral part of comprehensive cancer care. However, significant diversity concerning the design of SPC in the German Comprehensive Cancer Center (CCC) Network led to the establishment of consensual best practice recommendations for integration of SPC into the clinical structures, processes, research, and education throughout the CCC network. The recommendations contribute to a greater awareness relating to the strategic direction and development of SPC in CCCs. The access to information about SPC and access to offers regarding SPC shall be facilitated by implementing the recommendations in the course of treatment of patients with cancer.

Shortness of breath and cough in patients in palliative care.

BACKGROUND: Shortness of breath and cough are common, disturbing symptoms in patients receiving palliative care. They arise in 10% to 70% of patients with advanced cancer and in 60% to nearly 100% of patients with non-malignant underlying diseases, depending on the type of disease. METHODS: This review is based on a selective literature search in the Medline, Embase, and PsycInfo databases and on current recommendations from Germany and other countries, as well as on the authors' personal experience. RESULTS: Some general measures to address these problems are reassurance, development of an emergency plan, physical activity, and relaxation exercises. Supportive non-pharmacological measures may include the use of a rollator (level of evidence [LoE] 1-), a cool draft of air as from a handheld fan (LoE 1-), physiotherapy, and respiratory therapy. There is good evidence (LoE 1+) to support the administration of opioids as the medications of choice; benzodiazepines are often used, but a meta-analysis did not reveal any statistically significant benefit (LoE 1+). Expectorants can help patients who cough with marked sputum formation. Antitussants suppress the cough reflex both peripherally and centrally (LoE 1+ to 3). Opioids, including morphine (LoE 1-) and dextromethorphan (LoE 1-), are effective antitussants with low toxicity. CONCLUSION: In most patients, shortness of breath and cough can be relieved by a series of therapeutic measures.