"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study.

Background: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce.

Aim: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program.

Patient altruism at the end of life: A scoping review.

Objectives: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts.

Cognitive abilities and engagement in advance care planning among older adults: Results of a Swiss populational study.

Individuals often wait until the last moment to plan their end-of-life (EOL) care. Yet, decision-making capacity decreases with age, which could compromise engagement in and the effectiveness of advance care planning (ACP). Little is known about the association between cognitive abilities and the steps involved in the multifaceted process of ACP in older adults.

Overestimation of Survival Rates of Cardiopulmonary Resuscitation Is Associated with Higher Preferences to Be Resuscitated: Evidence from a National Survey of Older Adults in Switzerland.

Background: Many widely used advance directives templates include direct questions on individuals' preferences for cardiopulmonary resuscitation (CPR) in case of decision-making incapacity during medical emergencies. However, as knowledge of the survival rates of CPR is often limited, individuals' advance decisions on CPR may be poorly aligned with their preferences if false beliefs about the survival rates of CPR shape stated preferences for CPR.

Methods: We analyzed nationally representative data from 1,469 adults aged 58+ y who responded to wave 8 (2019/2020) of the Swiss version of the Survey on Health, Ageing, and Retirement in Europe (SHARE) to assess the partial association between knowledge of CPR survival rates and stated preferences for CPR using multivariable probit regression models that adjust for social, health, and regional characteristics.

Advance Care Planning: A Story of Trust Within the Family.

As the family usually plays a central role at the end of life, the quality of family relationships may influence how individuals approach advance care planning (ACP). Our study investigates the associations of trust in relatives with regard to end-of-life (EOL) issues-used as a proxy measure of family relationship quality-with individuals' engagement in EOL discussions, advance directive (AD) awareness, approval and completion, and designation of a healthcare proxy. Using nationally representative data of adults aged 55 years and over from wave 6 (2015) of the Survey of Health, Ageing, and Retirement in Europe (SHARE) in Switzerland ( = 1911), we show that complete trust in relatives is related to higher engagement in ACP.

'Thank you for loving me': A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives.

Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits.

Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context.

Older adults' medical preferences for the end of life: a cross-sectional population-based survey in Switzerland.

Objectives: Medical decision-making at the end of life is common and should be as patient-centred as possible. Our study investigates older adults' preferences towards three medical treatments that are frequently included in advance directive forms and their association with social, regional and health characteristics.

Setting: A cross-sectional study using population-based data of wave 8 (2019/2020) of the Swiss component of the Survey of Health, Ageing and Retirement in Europe.

Giving and receiving thanks: a mixed methods pilot study of a gratitude intervention for palliative patients and their carers.

Background: Psychological research examining the nature and workings of gratitude has burgeoned over the past two decades. However, few studies have considered gratitude in the palliative care context. Based on an exploratory study which found that gratitude was correlated with better quality of life and less psychological distress in palliative patients, we designed and piloted a gratitude intervention where palliative patients and a carer of their choice wrote and shared a gratitude letter with each other.

Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis.

Background: Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important.

"More life and more days"-patient and care characteristics in a specialized acute pediatric palliative care inpatient unit.

Unlabelled: Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC.

"Life goes on": Perspectives on the will to live from residents of Swiss long-term care facilities.

Objectives: While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients' resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents' definitions of and factors influencing their WTL.

'We Have Guidelines, but We Can Also Be Artists': Neurologists Discuss Prognostic Uncertainty, Cognitive Biases, and Scoring Tools.

Introduction: Ischemic stroke is a leading cause of disability and mortality worldwide. As acute stroke patients often lose decision-making capacity, acute management is fraught with complicated decisions regarding life-sustaining treatment (LST). We aimed to explore (1) the perspectives and experiences of clinicians regarding the use of predictive scores for LST decision making in severe acute stroke, and (2) clinicians' awareness of their own cognitive biases in this context.

Goals of care changes after acute ischaemic stroke: decision frequency and predictors.

Objectives: Little is known about the factors leading to a change in goals of care (CGC) in patients with an acute ischaemic stroke (AIS). Our aim was to analyse the proportion and outcome of such patients and identify medical predictors of a CGC during acute hospitalisation.

Methods: We retrospectively reviewed all patients who had an AIS over a 13-year period from the prospectively constructed Acute Stroke Registry and Analysis of Lausanne.

The Path Is Made by Walking-Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study.

In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program.

The involvement of palliative care with neurology - a comparison of UK, Switzerland and Italy.

Objectives: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients.

Methods: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland.

Results: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS.

Knowledge Gaps in End-of-Life Care and Planning Options Among Older Adults in Switzerland.

Good knowledge about end-of-life (EOL) care options helps in discussing and planning important aspects of the end of life in advance and contributes to improved well-being among dying patients and their families. Our study explores knowledge levels of EOL care and planning options and its sociodemographic and regional patterning using nationally representative data from respondents aged 55+ of wave 6 of the Survey of Health, Ageing and Retirement in Europe in Switzerland ( = 2,199). Respondents answered correctly on average to just under four out of eight questions regarding EOL care options.

Dimensions of end-of-life preferences in the Swiss general population aged 55+.

Background: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues.

Objective: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland.

Methods: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale.

Perceptions and Knowledge Regarding Medical Situations at the End of Life among Older Adults in Switzerland.

Perceptions and knowledge regarding end-of-life health and health care can influence individuals' advance care planning, such as the completion and content of advance directives. To assess older adults' perceptions of medical end-of-life situations in Switzerland along with their accuracy and corresponding associations with sociodemographic characteristics. This is an observational study.

[Identifying patients in need of general or specialised palliative care with ID-PALL].

Palliative care is frequently associated with end of life and cancer, both in the general population and among healthcare professionals. ID-PALL is a new, short, easy-to-use instrument to help professionals to identify general or specialized palliative care needs in adult inpatients in different care settings. ID-PALL has already been validated in internal medicine units.

Posttraumatic growth in palliative care patients and its associations with psychological distress and quality of life.

Objectives: Posttraumatic growth (PTG) refers to positive psychological changes resulting from individuals' inner struggles with traumatic events such as life-threatening illness. Although palliative care patients are confronted with their own mortality, little is known about their PTG experience. This study investigates whether PTG is an empirically relevant concept for palliative patients by assessing the prevalence and areas of growth, and examining associations with psychological distress and quality of life.