BACKGROUND: The linguistic and cultural diversity found in European societies creates specific challenges to palliative care clinicians. Patients' heterogeneous habits, beliefs and social situations, and in many cases language barriers, add complexity to clinicians' work. Cross-cultural teaching helps palliative care specialists deal with issues that arise from such diversity. This study aimed to provide interested educators and decision makers with ideas for how to implement cross-cultural training in palliative care.
METHODS: We conducted four focus groups in French- and Italian-speaking Switzerland. All groups consisted of a mix of experts in palliative care and/or cross-cultural teaching. The interdisciplinary research team submitted the data for thematic content analysis.
RESULTS: Focus-group participants saw a clear need for courses addressing cross-cultural issues in end-of-life care, including in medical disciplines outside of palliative care (e.g. geriatrics, oncology, intensive care). We found that these courses should be embedded in existing training offerings and should appear at all stages of curricula for end-of-life specialists. Two trends emerged related to course content. One focuses on clinicians' acquisition of cultural expertise and tools allowing them to deal with complex situations on their own; the other stresses the importance of clinicians' reflections and learning to collaborate with other professionals in complex situations. These trends evoke recent debates in the literature: the quest for expertise and tools is related to traditional twentieth century work on cross-cultural competence, whereas reflection and collaboration are central to more recent research that promotes cultural sensitivity and humility in clinicians.
CONCLUSION: This study offers new insights into cross-cultural courses in palliative and end-of-life care. Basic knowledge on culture in medicine, variable practices related to death and dying, communication techniques, self-reflection on cultural references and aptitude for interprofessional collaboration are central to preparing clinicians in end-of-life settings to work with linguistically and culturally diverse patients.
Many international studies have shown that the process of palliative sedation in an end-of-life context can be an adverse, even emotionally distressing experience for nurses. However, to the best of our knowledge, the experience of nurses working in palliative care in Switzerland has never been explored. The purpose of our study was, therefore, to understand and describe nurses' experience with the process of palliative sedation in line with the Swiss guidelines developed in 2005. We opted for an exploratory qualitative monocentric study using comprehensive individual interviews to achieve this objective. A total of 10 nurses were approached, and nine agreed to take part. After the interviews were transcribed, eight were ultimately included in the analysis. This analysis shows that nurses' attitudes toward the process of palliative sedation tended to be hesitant, resistant, or confident and that this was linked to the length of time they had worked in palliative care. These findings suggest that the 2005 Swiss guidelines do not protect nurses against the uncertainty related to process of palliative sedation. A national comprehensive multicentric study therefore needs to be developed to consolidate these results.
BACKGROUND: Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care.
METHODS: A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review.
RESULTS: Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family's preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient's preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%.
CONCLUSION: Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family's decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.
BACKGROUND: Long-term survival and functional outcomes should influence admission decisions to intensive care, especially for patients with advanced disease.
AIM: To determine whether physicians' predictions of long-term prognosis influenced admission decisions for patients with and without advanced disease.
DESIGN: A prospective study was conducted. Physicians estimated patient survival with intensive care and with care on the ward, and the probability of 4 long-term outcomes: leaving hospital alive, survival at 6 months, recovery of functional status, and recovery of cognitive status. Patient mortality at 28 days was recorded. We built multivariate logistic regression models using admission to the intensive care unit (ICU) as the dependent variable.
SETTING/PARTICIPANTS: ICU consultations for medical inpatients at a Swiss tertiary care hospital were included.
RESULTS: Of 201 evaluated patients, 105 (52.2%) had an advanced disease and 140 (69.7%) were admitted to the ICU. The probability of admission was strongly associated with the expected short-term survival benefit for patients with or without advanced disease. In contrast, the predicted likelihood that the patient would leave the hospital alive, would be alive 6 months later, would recover functional status, and would recover initial cognitive capacity was not associated with the decision to admit a patient to the ICU. Even for patients with advanced disease, none of these estimated outcomes influenced the admission decision.
CONCLUSIONS: ICU admissions of patients with advanced disease were determined by short-term survival benefit, and not by long-term prognosis. Advance care planning and developing decision-aid tools for triage could help limit potentially inappropriate admissions to intensive care.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
Objectives: Positive attitudes towards end-of-life care are essential among nursing students to adequately support terminally ill patients and enable students to feel confident about providing end-of-life care. This study aimed to determine nursing students’ attitudes towards caring for terminally ill patients, as well as the associations between these attitudes and year of study, exposure to terminally ill people, self-perceived nursing skills and subjective impact of instruction.
Design: Cross-sectional study.
Setting: A health sciences school in Switzerland.
articipants: All preparatory students, first-year nursing students and third-year nursing students were invited to participate; 178 agreed to participate.
Primary outcome measure: Attitudes towards terminally ill patients were assessed using the Frommelt Attitudes Toward Care of the Dying Scale, Form B (FATCOD, Form B), as the primary outcome. Secondary measures were gender, age, year of study, number of terminally ill persons encountered, self-perceived palliative care nursing skills and subjective impact of instruction.
Results: Mean FATCOD, Form B score was 117.7 (SD: 9.8, median: 118.0). Better attitudes towards terminally ill patients were significantly associated with being aged 24–26 years (ß=6.97, 95% CI 2.00 to 11.95, p=0.006), year of study (ß=3.47, 95% CI 1.69 to 5.25, p<0.001), professional encounters with terminally ill patients (ß=3.59, 95% CI 2.23 to 4.95, p<0.001) and self-perceived palliative care nursing competence (ß=1.23, 95% CI 0.41 to 2.04; p=0.003). In the multivariate analysis, professionally encountering terminally ill patients remained significant (ß=3.00; 95% CI 1.43 to 4.57; p<0.001).
Conclusions: Nursing students’ attitudes towards caring for terminally ill patients were positive and improved as their year of study progressed. Professional exposure to terminally ill patients was the strongest factor, followed by private encounters, self-perceived palliative care nursing skills, year of study and age.
The current study explores the end-of-life (EOL) preferences of a national representative sample of adults aged 55 and older in Switzerland and shows how these preferences vary by respondents' sociodemographic characteristics and the linguistic region in which they live. Many of the presented EOL attributes are considered as (very) important by a large majority of the older population in Switzerland with significant variations across sociodemographic groups. Specifically, gender is related to psychosocial aspects of EOL, age to the importance attached to avoiding being a burden on the society, and education levels to preferences regarding overtreatment and advance care planning. The results highlight the importance of a personalized, holistic and interdisciplinary approach to EOL and EOL care, since social, psychological, organizational and physical aspects of EOL are rated as (very) important with significant differences in EOL preferences across sociodemographic groups.
OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED.
METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey.
RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%).
CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care.
METHODS: Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care.
RESULTS: Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies.
CONCLUSIONS: To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.
COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.
Objectives: We evaluated healthcare cost differences at the end of life (EOL) between language regions in Switzerland, accounting for a comprehensive set of variables, including treatment intensity.
Methods: We evaluated 9716 elderly who died in 2014 and were insured at Helsana Group, with data on final cause of death provided by the Swiss Federal Statistical Office. EOL healthcare costs and utilization, = 1 ICU admission and 10 life-sustaining interventions (cardiac catheterization, cardiac assistance device implantation, pulmonary artery wedge monitoring, cardiopulmonary resuscitation, gastrostomy, blood transfusion, dialysis, mechanical ventilation, intravenous antibiotics, cancer chemotherapies) reimbursed by compulsory insurance were examined.
Results: Taking into consideration numerous variables, relative cost differences decreased from 1.27 (95% CI 1.19–1.34) to 1.06 (CI 1.02–1.11) between the French- and German-speaking regions, and from 1.12 (CI 1.03–1.22) to 1.08 (CI 1.02–1.14) between the Italian- and German-speaking regions, but standardized costs still differed. Contrary to individual factors, density of home-care nurses, treatment intensity, and length of inpatient stay explain a substantial part of these differences.
Conclusions: Both supply factors and health-service provision at the EOL vary between Swiss language regions and explain a substantial proportion of cost differences.
Switzerland has the longest history of the legal practice of non-physician assisted suicide of any country. Assisted suicide is not very tightly regulated in Switzerland, and almost all assisted suicides are supported by a right-to-die organisation. Our study investigates older adults' attitudes and behaviour towards assisted suicide, and the associations of these with the individuals' sociodemographic and cultural characteristics, as well as with their own health status and healthcare-related experiences in Switzerland. We performed weighted prevalence and multivariable logistic regression estimation on a nationally representative sample of adults aged 55 and over from wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe (SHARE) in Switzerland (n = 2168). Overall, 81.7% of respondents supported the legality of assisted suicide, as is currently the case in Switzerland, and 60.9% stated that they would potentially consider asking for assisted suicide under certain circumstances; 28.2% of respondents reported either that they are already or that they are likely to become a member of a right-to-die organisation, with 4.9% of respondents reporting to already be a member of such an organisation at the time of the survey. Higher levels of education and previous experience as a healthcare proxy were positively associated with more favourable attitudes and behaviour towards assisted suicide. Compared to individuals aged 55-64, adults aged 65-74 generally showed more favourable attitudes and behaviour towards assisted suicide. By contrast, religious persons displayed more negative attitudes and behaviour towards assisted suicide. Attitudes towards assisted suicide were also more negative in the oldest age group (75+) in comparison to adults aged 55-64, and among persons living in French- and Italian-speaking Switzerland compared to those living in German-speaking Switzerland. While approval for assisted suicide is high overall in Switzerland, more vulnerable population groups, such as older or less educated individuals, have less favourable attitudes towards assisted suicide. In addition, cultural sensitivities to and personal experiences with death and dying are likely to shape the approval or rejection of assisted suicide as it is currently implemented in Switzerland.
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
BACKGROUND: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory.
METHODS: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses.
RESULTS: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation.
CONCLUSION: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.
The legality of euthanasia and assisted suicide (AS) and nature of regulations of these practices remain controversial and the subject of lively debate among experts and the general public. Our study investigates attitudes and behaviours towards AS among older adults in Switzerland where the practice of AS has a relatively long history and remains rather unregulated. We aim to explore how individuals' preferences regarding their end of life, as well as individuals' trust in institutions involved in the practice or control of AS are associated with attitudes and behaviours towards AS. We analyse nationally representative data of adults aged 55 and over from wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe (SHARE) in Switzerland (n = 2,145). While large majorities supported current legal arrangements around AS in Switzerland (81.7%) and stated that they could consider AS for themselves under certain circumstances (61.0%), only a minority either was a member of a right-to-die organisation already (4.9%) or stated they were likely to become a member of such an organisation (28.2%). Stated preferences for control over the end of life and for maintaining essential capabilities at the end of life showed a positive association with AS-related attitudes and behaviours, whereas preferences for feeling socially and spiritually connected, as well as for not being a burden displayed a negative association with our outcomes. Higher levels of trust in one's relative were positively associated with both support for the legality of AS and potential use of AS. A positive association was also found between trust in the Swiss legal system and support for the legality of AS. By contrast, trust in religious institutions displayed a negative association with all five AS-related attitudes and behaviours. Similarly, trust in healthcare insurance companies was negatively associated with potential use of AS. Taken together, older adults were generally supportive towards current practices regarding AS. This approval appears to be closely related to individuals' preferences and, at different extends, to trust in social and public institutions with regard to end-of-life issues, which is relatively high in Switzerland.
La majorité des patients COVID-19 hospitalisés ont plus de 70 ans et 50 % de ceux qui en décèdent ont plus de 83 ans. La clinique typique n’est pas toujours présente chez les personnes très âgées qui peuvent être et rester totalement asymptomatiques (dépistage contact) ou avoir des manifestations aspécifiques (baisse de l’état général, chutes, delirium, fatigue). Le frottis anal, qui minimise le risque d’exposition, peut s’avérer très utile en EMS lors de diarrhées. L’âge avancé est un marqueur de mauvais pronostic, mais devrait être pondéré à l’aide d’index pronostiques pour tenir compte de l’hétérogénéité de l’état de santé, fonctionnel et cognitif à l’âge avancé. Recueillir les souhaits de la personne et évaluer son espérance de vie restante permet d’anticiper les décisions de soins selon le niveau de tension du système de santé.
Due to the current development around the COVID-19 pandemic, palliative ch has created the Task Force Focus Corona with representatives from the specialist group of doctors, nursing and pastoral care. The aim of the Task Force is to provide recommendations for health professionals on the treatment of palliative care patients in the various settings inpatient and outpatient. In doing so, we benefit greatly from our regional roots throughout Switzerland. Our guidelines are based on the experience and recommendations of our colleagues from the canton of Ticino. You can find all our recommendations on our website.
Purpose: Gliomas are primary brain tumors with a life-limiting course of disease, and the last weeks of life are often characterized by neurological deficits that affect communication and personality. End-of-life treatment in this patient group therefore requires specific approaches. To date, little data is available on patients’ and caregivers’ needs and experiences in the last phase of the disease.
Methods: In this observational study, relatives of patients treated at the University Hospital Zurich, Switzerland and deceased 2015–2017 due to glioma progression were contacted to complete a structured questionnaire assessing caregivers experience within the last weeks of the disease.
Results: The survey was sent to 120 relatives of deceased patients with a glioma (WHO grades II–IV) (median patient age: 62 years; 73.8% male). Forty-three questionnaires were returned (37.7%). Approximately half of the patients were taken care of at home in the last 4 weeks of the disease, mainly with the assistance of in-home nursing care, of which eventually 14 patients (63.6%) died at home. While caregivers reported high satisfaction with medical and nursing care, psychological support was rated average to poor on a 10-point scale. Free comment fields were used widely, revealing open questions and needs of the relatives.
Conclusions: This study illustrates the need for a more patient-centered end-of-life care including higher psychological support mechanisms, and a higher inclusion and consideration of relatives and caregivers into the care focus. Earlier discussion of end-of-life preferences could prevent hospitalizations in the last phase of life and could improve patients’ and caregivers’ quality of life.
En 2013, le Conseil d’éthique de la Fédération genevoise des établissements médico-sociaux (Fegems) émettait des recommandations relatives au "Respect des volontés du résidant atteint de troubles cognitifs", que la Revue internationale de soins palliatifs reprend ci-après dans son intégralité. En effet, les enjeux éthiques soulevés par les soins – entendus au sens large – aux personnes souffrant de troubles cognitifs restent malheureusement d’actualité. C’est la raison pour laquelle ce même conseil a publié en 2019 des nouvelles recommandations intitulées « Petit manuel d’anticipation en EMS : le projet d’accompagnement et les directives anticipées ». Dans cette publication, le Conseil d’éthique souligne, à travers des exemples concrets, l’importance de l’anticipation dans l’accompagnement de la résidante ou du résidant. L’anticipation joue un rôle déterminant parce que la pratique montre que beaucoup de résidant-e-s se sentent inconfortables lorsqu’ils doivent envisager une incapacité de discernement future et que les professionnel-le-s se sentent mal à l’aise et se demandent quand et comment les informer, ainsi que leurs proches, de leurs droits. En outre, le domaine des directives anticipées est complexe et technique, en raison des exigences légales et des difficultés d’interprétation qu’il comporte. Le Conseil d’éthique est convaincu que le projet d’accompagnement est l’outil le mieux adapté pour appréhender la vie de la résidante ou du résidant dans l’EMS, et pour donner une assise cohérente à d’autres dispositifs tels que le projet de soins anticipé ou les directives anticipées.