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.
Currently,Swiss Medical Weekly boasts a highly interesting and time-relevant contribution of Hug and colleagues, titled “Medical end-of-life decisions in the oldest old in Switzerland” which examines the differences between the oldest old and younger patients in terms of the frequency of various end-of-life decisions such as intensified alleviation of pain and other symptoms and, most notably, withholding and withdrawing life-sustaining treatments.
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Good coordination of healthcare services is vital for ensuring health cost efficiency and high-quality care for patients. It is especially important in the context of palliative care as services are often highly fragmented due to a combination of diverse professional groups, organizations, and approaches to care. However, the coordination of services in this field is often evaluated as insufficient. Little is known about the challenges to coordination in this sector in Switzerland. The present study addresses this gap in research by investigating the challenges to coordination at the interface of palliative care services in Switzerland. Interviews (n = 24) with 38 healthcare practitioners working in palliative care in four cantons (Basel-City, Lucerne, Ticino, and Vaud) form the basis for this investigation. The selected cantons not only represent French, Italian, and German language regions of Switzerland but also represent diverse rural, urban, and historical contexts. Expert interviews are analyzed using structural content analysis. Three clusters of challenges to coordination were identified in the data: (1) organizational challenges to coordination, which relate to explicit forms of coordination; (2) relational challenges to coordination; and (3) structural challenges to coordination, which relate to implicit forms of coordination. The study reveals a need for better financial support for coordination in palliative care and a stronger focus on interprofessional coordination in educating professionals in palliative care. Future research on how to further foster good team coordination practices between primary and specialized palliative services merits further investigation. Since these findings are indicative of areas for improvement for coordination at the interface of Swiss palliative care services, they are of particular interest for healthcare practitioners, policymakers, and researchers involved in the evolution of coordinative practice.
AIMS OF THE STUDY: Based on an incidental observation made in the context of the Swiss National Science Foundation (SNSF) Project 67 "End-of-life decision-making in extremely low birth weight infants in Switzerland", this retrospective multicentre observational study aimed to analyse circumstances of delivery room deaths after late termination of pregnancy (LTOP) in Switzerland over a 3-year period.
METHODS: All delivery room deaths (including live and stillbirths) following LTOP among infants with a gestational age between 22 0/7 and 27 6/7 weeks at the nine Swiss level III perinatal centres between 1 July 2012 and 30 June 2015 were analysed. Indications for LTOP were classified as either (a) maternal emergencies or (b) fetal anomalies severe enough to cause significant maternal psychological distress. Whenever possible, specific diagnoses were recorded. Spontaneous intrapartum death and fetal death caused by injection of a cardioplegic drug were distinguished for stillborn infants.
RESULTS: A total of 465 delivery room deaths among extremely low gestational age newborns (ELGANs) were identified over the 3-year study period of the SNSF project. Of these, 195 (42%) occurred in the context of LTOP. Central nervous system malformations, chromosomal anomalies, severe congenital heart disease, multiple malformations and maternal emergencies accounted for 70% of all LTOPs. LTOPs resulted in live births in 76 (39%) cases. No correlation between gestational age and rate of live births was observed. Fetal death caused by injection of a cardioplegic drug was documented in only three cases. All infants born alive after LTOP died in the delivery room without resuscitation attempts. The use of drugs for palliative care in these patients was either rare or, alternatively, incompletely documented.
CONCLUSION: LTOPs contribute significantly to mortality rates among ELGANs and should therefore be included in perinatal registries. Uniform reporting of LTOPs should be established. Infants born alive after LTOP are entitled to comprehensive palliative care like any other infant born under different circumstances. Development of national guidelines for LTOPs (including the role of fetal death caused by injection of a cardioplegic drug and palliative birth as an alternative to induced abortion) would be highly desirable to guarantee acceptable standards of care.
OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU.
DESIGN: Substudy of a nation-wide retrospective chart review.
SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland.
PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions.
MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008).
CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.
Quelle place le repas de funérailles occupe-t-il dans les contes et coutumes de la Suisse romande ? L’article parcourt le monde des contes pour découvrir la relation que les vivants entretiennent avec les morts au travers des repas. Il traite de la place de l’os ainsi que d’autres symboles et fournit une analyse plus complète du conte du Petit Chaperon Rouge où la fillette mange sa grand-mère et accède au statut de femme. En conclusion, l’auteure interroge sa propre pratique du repas de funérailles dans le contexte d’une expérience personnelle de deuil.
BACKGROUND: Legal dispositions for advance care planning (ACP) are available but used by a minority of older adults in Switzerland. Some studies found that knowledge of and perception of those dispositions are positively associated with their higher usage. The objective of the present study is to test the hypothesis of an association between increased knowledge of ACP dispositions and a more positive perception of them.
METHODS: Data collected in 2014 among 2125 Swiss community-dwellers aged 71 to 80 of the Lausanne cohort 65+ (Lc65+), a population-based longitudinal study on aging and frailty. Data collection was conducted through a questionnaire on knowledge, use and perception of lasting power of attorney, advance directives and designation of a health care proxy. Covariables were extracted from the Lc65+ database. Bivariable and multivariable regression analyses assessed the association between level of knowledge and perception.
RESULTS: Half the participants did not know about legal dispositions for ACP; filing rates were 14% for advance directives, 11% for health care proxy and 6% for lasting power of attorney. Level of knowledge about the dispositions was associated with a more positive perception of them, even when adjusting for confounding factors.
CONCLUSION: Although the direction of the association's causality needs more investigation, results indicate that better knowledge on ACP dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge.
AIMS OF THE STUDY: To analyse medical end-of-life decision making among the oldest old (80+ years) in Switzerland, focusing not only on treatments withheld or withdrawn but also on those continued until death.
METHODS: This was a retrospective follow-up study of deaths registered in Switzerland between August 2013 and January 2014 using a standardised questionnaire completed by the attending physician. All individuals aged 65 years and older who did not die suddenly and completely unexpectedly, and who had met the responding physician prior to death were included (n = 2842). We examined three age groups: 65–79, 80–89, and 90+ years. Logistic regression analysis was used to identify age-related differences, controlled for place of death and sociodemographic characteristics.
RESULTS: In 83.8% of the study population at least one medical end-of-life decision was made, and for 39.4% the use of a potentially life-sustaining treatment was documented. Alleviation of pain and other symptoms with a possible life-shortening effect was performed with 29% higher odds among the 90+-year-olds (odds ratio [OR] 1.29, 95% confidence interval [CI] 1.01–1.66) than in the youngest age group. Withholding or withdrawing potentially life-sustaining treatment with or without the explicit intention to hasten death did not differ with age. However, when the frequency of withholding a potentially life-sustaining treatment was compared with the frequency of using this treatment (either continued until death or withdrawn later on), the former was more common in old age (80–89 years), and particularly in very old age (90+ years) for most of the treatments studied. This applied especially for ventilator therapy (80–89 years: OR 2.83, 95% CI 1.82–4.41; 90+ years: OR 6.17, 95% CI 2.89–13.17, compared with 65–79 years), artificial nutrition (ORs 2.33, 95% CI 1.46–3.71 and 4.44, 95% CI 2.28–8.65, respectively), and antibiotics (ORs 1.53, 95% CI 1.11–2.09 and 1.57, 95% CI 1.05–2.35, respectively). Age had no independent impact on artificial hydration.
CONCLUSIONS: The use of some potentially life-sustaining treatments decreased with older age and, in relation, the relative frequency of withholding such treatments increased. There may be various reasons for this finding: less benefit of a particular treatment in older patients for instance due to comorbidities, higher burden of treatment, and finally a tacit consensus of physicians and patients that death is nearing.
Ce n'est pas le suicide, la rationalité ou la liberté dont il serait parfois l'expression, qui est ici mon objet, mais l'appréciation de la nature de l'aide apportée à quiconque réclame assistance au suicide. Il s'agit bien de l'assistance au suicide et non de l'euthanasie, car ces deux situations, qui présentent des similitudes, doivent être différenciées : fournir à une personne les moyens de se supprimer n'est pas la supprimer. Dans le cas du suicide assisté, le tiers n'occupe pas la même place que dans l'euthanasie puisqu'il met à disposition le produit toxique destiné à être absorbé par le patient au lieu de pratiquer lui-même l'injection létale. Lors d'un geste euthanasique, un tiers est nécessairement présent et c'est lui qui met fin aux jours de la personne. Ce n'est pas le cas du suicide assisté où le tiers peut être absent.
La créativité, c'est cette capacité à percevoir ce qui est là, tapi entre les mots, sous les gestes, dans les interstices du quotidien. C'est la vie qui palpite derrière les apparences, ce sont ces désirs enfouis qui témoignent de la vie. La créativité, c'est permettre à toute cette vitalité de se dire et de se réaliser. Et c'est comme une invitation à sortir des cabines téléphoniques trop étroites dans lesquelles nous nous enfermons, souvent en toute inconscience.
La formation continue est un enjeu majeur pour l'appropriation du rôle et le développement des connaissances et des compétences des personnes ressources. La Haute Ecole de Santé de Genève (HEdS) propose tous les ans des prestations de formation continue comprenant des formations post grades construites en partenariat avec les milieux professionnels et souvent co-organisées avec d'autres écoles romandes. Par des processus de formation d'adultes en prise avec l'actualité, elles permettent aux participants d'analyser les pratiques individuelles, collectives, institutionnelles et sociales, et de développer leurs compétences.
D'ici 2030, le nombre de personnes âgées de 65 ans et plus en Suisse devrait augmenter de 66 % pour dépasser les deux millions de personnes, avec une hausse plus soutenue pour les plus de 80 ans. Cette évolution entraîne le développement des soins palliatifs au sein des établissements médico-sociaux pour proposer un accompagnement visant la qualité de vie des personnes très âgées, très dépendantes et multi morbides. Pour permettre aux établissements de répondre à cette évolution, tous les collaborateurs doivent être formés à l'approche palliative. Dans ce cadre, la Haute école de santé de Genève est régulièrement mandatée pour proposer des dispositifs de formation. Soucieux de la qualité et de l'efficacité des formations dispensées, nous avons développé l'utilisation systématique d'une méthode d'évaluation du changement des pratiques professionnelles. Cette méthode permet d'objectiver le transfert des savoirs et savoir-agir dans l'activité quotidienne des professionnels après la formation. A partir d'un exemple, nous montrerons qu'au-delà d'une simple réponse au besoin de formation, notre méthode d'évaluation met en évidence les bénéfices d'une formation interprofessionnelle en soins palliatifs.
CONTEXT: A central approach of palliative care has been to provide holistic care for people who are dying, terminally ill or facing life-limiting illnesses while neither hastening nor postponing death. Assisted dying laws allow eligible individuals to receive medically administered or self-administered medication from a health provider to end their life. The implementation of these laws in a growing number of jurisdictions therefore poses certain challenges for palliative care.
OBJECTIVES: To analyse the research literature about the relationship of assisted dying with palliative care, in countries where it is lawful.
METHODS: A five-stage scoping review process was adapted from the Joanna Briggs Institute. Data sources searched through October 2018 were MEDLINE, CINAHL, PsychINFO, SCOPUS, and ProQuest dissertations and theses, with additional material identified through hand searching. Research studies of any design were included, but editorials or opinion articles were excluded.
RESULTS: After reviewing 5778 references from searches, 105 were subject to full-text review. 16 studies were included: from Belgium (4), Canada (1), Switzerland (2) and the United States (9). We found the relationship between assisted dying and palliative care practices in these locations took varied and sometimes combined forms: supportive, neutral, coexisting, not mutually exclusive, integrated, synergistic, cooperative, collaborative, opposed, ambivalent and conflicted.
CONCLUSION: The studies in this review cast only partial light on challenges faced by palliative care when assisted dying is legal. There is pressing need for more research on the involvement of palliative care in the developing practices of assisted dying, across a growing number of jurisdictions.
PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.
RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.
CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.