Exploring long-term cancer survivors' care experiences and unmet needs: protocol for a qualitative study.

BACKGROUND: The number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals. METHODS: To investigate experiences related to follow-up care, focus groups (n = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups (n = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons. DISCUSSION: The qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.

An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study.

BACKGROUND: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries. METHODS: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full case will be analyzed by all researchers after being translated into English using a pre-prepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis. DISCUSSION: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.

National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project.

BACKGROUND: In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program 'Palliative care in Pandemics' (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). METHODS: Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. DISCUSSION: For a future "pandemic preparedness" national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

[The physician's role in various clinical contexts. The physician's role in palliative care]. / Die Arztrolle in unterschiedlichen klinischen Kontexten. Der Arzt als Begleiter in der Palliativmedizin.

The palliative care physician accompanies patients and their families in times of great disstress and potentially difficult medico-ethical decision making. The main objective of palliative care is the alleviation of pain and distressing symptoms in patients with progressive, incurable illness. By addressing physical problems and psychosocial as well as spiritual needs, palliative care aims at improving the quality of life of patients in order to help them to spend their remaining lifetime with as much autonomy as possible and in dignity. The concept of accompaniment in palliative care involves a multiprofessional team. Important factors in this approach are time, trust, professional, ethical, communicative, social, and emotional competencies and the attitude of physicians and other professionals. The physician is given responsibility by the patient. In accepting the role as a respondent to another individual's request for help, the physician can avoid the pitfalls of the obsolete paternalistic relationship model, or of one that is either merely autonomy based or of a provider-customer nature.

[How many patient deaths can a team cope with? : a nationwide survey of palliative care units in Germany]. / Wie viel Tod verträgt das Team? : Eine bundesweite Befragung der Palliativstationen in Deutschland.

BACKGROUND: How many patient deaths the teams at palliative care units can cope with, the supporting factors in coping and the future prospects of the teams have not yet been subject to research in Germany. The aim of the study was to assess burden factors, burden symptoms and protective factors, the critical number and distribution of patient deaths as well as the prospects of the teams. SAMPLE AND METHODS: A total of 873 members of palliative care teams from 95 (60% of n=158) German palliative care units took part in this explorative evaluation. Basic factors could be identified using factor analysis. Differences between professional groups were checked with analysis of variance. RESULTS: Results showed that not having reached the objectives of palliative care was the central burden factor. In the majority of cases a team reacted by being loquacious. The team itself was ranked as the most important protective factor. The mean critical number of deaths was 4.4 per week. Consecutive patient deaths were rated as being significantly more stressful than evenly spread deaths. Ratings for the future prospects of the team were significantly lower in teams where not meeting the objectives of palliative care was considered a high burden factor. CONCLUSION: A clearer definition of the objectives of palliative care and support of team communication are desirable.

[Tuition in palliative medicine. Does it have an impact on future physicians' attitudes toward active euthanasia?]. / Palliativmedizinische Lehre : Gibt es einen Einfluss auf die Haltung zukünftiger Arzte zur aktiven Sterbehilfe?

BACKGROUND: The aim of this study was to examine the attitude of medical students with or without tuition in palliative medicine towards active euthanasia and whether this changes during the course of the study period. METHODS: A questionnaire was developed with 13 items (focus groups, preliminary tests) which takes knowledge and attitude into consideration. Students in the 2nd (2CS) and 6th (6CS) clinical semesters at 2 universities with (U1) and without (U2) palliative medicine as a compulsory subject were included. RESULTS: The initial approval rate for active euthanasia was high for students in 2CS at both universities (U1 and U2), remained stable for U2 and sank clearly for U1. At U1 the number of students who would consider active euthanasia for themselves was greatly reduced but only slightly for U2. Of all the students, 40.9% of U2 and 22.5% of U1 were of the opinion that they could practice active euthanasia on patients. The majority admitted to being frightened to have responsibility for incurable patients. Of the students in 6CS, only 12.2% from U1 and 7.1% from U2 considered themselves sufficiently prepared to be responsible for terminally ill patients. CONCLUSIONS: The results of this questionnaire demonstrated a clear influence of tuition in palliative medicine on the rejection attitude of students towards active euthanasia, however, the attitude proactive euthanasia was still high. The results indicate that tuition in palliative medicine must be modified and substantially intensified.