The associations of palliative care experts regarding food refusal : a cross-sectional study with an open question evaluated by triangulation analysis

Introduction: Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal? Objective: To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior. Methods: A cross-sectional study, starting with an open question focusing professionals’ associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories. Results: A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with endof-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable. Conclusion: Clarifying the cause of food refusal requires a great deal of knowledge and is strongly influenced by the associations of health professionals. While the associations have very negative connotations, information and training is needed to make professionals aware of this and to change their associations. With this knowledge and in an interprofessional cooperation, mis-labelling of patient settings can be avoided and fears can be reduce

The need to distinguish between different forms of oral nutrition refusal and different forms of voluntary stopping of eating and drinking

Voluntary stopping of eating and drinking (VSED) is a well-known phenomenon among palliative care professionals. This study intent to distinguish between different forms of VSED. In a qualitative interview study 18 relatives were interviewed about their experiences of caring a person during VSED. Different forms of oral nutrition refusal and different forms of VSED were found and described. The study results help members of the multidisciplinary team to manage the situation appropriately

Perspectives of people accompanying a person during voluntary stopping eating and drinking : a convergent mixed methods study

Background: Voluntary stopping eating and drinking (VSED) is an option for people wishing to bring about premature death. In Switzerland, VSED is considered a controversial action at the end of life in the guidelines for “Management of dying and death,” which states that the decision to support or oppose VSED must be made individually by health care professionals; so far there are no instructions for action. The aim of this research was to explore the experiences of people who play an important role in VSED accompaniment, and to explain how the people involved in the process deal with VSED. Methods: This convergent mixed methods study included a national survey (n=1,681) and five focus group interviews (n=47). Data integration was conducted using the four-stage pillar integration process. Results: Given Swiss society interest, VSED has already established itself in the health system without the institutions having addressed the issue, whereupon health professionals make individual decisions when a person willing to die comes to them with a VSED wish. Health professionals are open to VSED, but are also ambivalent and would like to know more about it before being confronted with a VSED case. Conclusions: In Switzerland, VSED has become a rare but desired option for ending life prematurely. While health professionals are already being confronted with the phenomenon, there is a lack of discussion at the level of health institutions about how to deal with it

Development of a questionnaire to determine incidence and attitudes to “voluntary stopping of eating and drinking”

‘‘Voluntary stopping of eating and drinking’’ (VSED) is an option to hasten death at the end of life. There are no data available about incidence of either the explicit VSED or implicit (V)SED nor information about experiences and attitudes of health professionals about VSED in Switzerland

The voluntary stopping of eating and drinking : dying with dignity?

To die with dignity is a common wish but not one that is easily granted. Professor Dr André Fringer and Mrs Sabrina Stängle, both of the Zurich University of Applied Sciences, are investigating the voluntary stopping of eating and drinking (VSED) as a means to hasten death as an alternative to active euthanasia. Their work is driving forward our understanding of the medical and ethical ramifications of this practice

Discussion or silent accompaniment : a grounded theory study about voluntary stopping of eating and drinking in Switzerland

Background: Voluntary stopping of eating and drinking as an option to end life prematurely is gaining international attention, and health care professionals are increasingly confronted with the wish to die through voluntary stopping of eating and drinking by individuals. While to date, there are no guidelines in Switzerland to orient professional support, it is of interest how professionals and other people involved react to the situation. The aim of this qualitative study was to explore how health care professionals in Switzerland accompany individuals during voluntary stopping of eating and drinking and to analyze this decision-making process. Methods: Charmaz’s grounded theory constructivist methodology uses guidelines for systematic, theory-driven data analysis underpinned by a pragmatic philosophical perspective. Data were collected in autumn 2016 as part of a regional palliative care conference on voluntary stopping of eating and drinking. All participants of the expert meeting (N=50, including nurses, counsellors, ethicists, medical doctors, politicians, volunteers, and relatives) were invited to the focus group interviews, of which N=47 participated. We conducted fve focus group interviews, each lasting one hour. Results: The results showed that the accompaniment of those willing to die during voluntary stopping of eating and drinking was either discussed and cleared with one another or was unspoken and silently accompanied. Conclusions: The demands of participants for more knowledge must be heeded, and there is also a need for systematic instructions on how to proceed in the case of voluntary stopping of eating and drinking support and what needs to be considered

"Loneliness is a monotonous thing" : descriptive qualitative research on the loneliness of caring relatives

Background: The phenomenon of loneliness is increasing worldwide. Caring relatives (CRs) are at high risk of suffering from loneliness. Although some studies have already investigated the issue of loneliness among CRs, there is a lack of evidence to help understand the experience of loneliness in depth. The aim of this study is to record and analyse the experience of loneliness among CRs of chronically ill people. Specifically, the aim is to develop a conceptual model based on the concepts of social, emotional, and existential loneliness. Methodology: A qualitative-descriptive research design with narrative semistructured interviews was chosen. Thirteen CRs—three daughters, six wives and four husbands—participated in the study. The participants were an average of 62.5 years old. The interviews took place from September 2020 to January 2021 and lasted an average of 54 min. The data were analysed inductively using coding. The analysis was carried out in the following three coding phases: initial open coding, axial coding, and selective coding. The central phenomenon was abductively generated from the main categories. Results: A chronic illness gradually changes the participants’ normal lives over time. A feeling of social loneliness is experienced, as their quality of social contacts no longer meets their needs. Thoughts about the future and the question of why are omnipresent can create a feeling of existential loneliness. Lack of communication in the partnership or in the family relationship, the changed personality of the ill person as well as the resulting role shift are stressful. Moments of closeness and tenderness become rare, and a change in togetherness takes place. In such moments, there is a strong feeling of emotional loneliness. Personal needs rapidly fade into the background. One’s own life comes to a standstill. Accordingly, loneliness is perceived by the participants to be a stagnant life and is experienced as monotonous and painful. Feelings such as helplessness, powerlessness, frustration, anger, and sadness accompany this loneliness. Conclusion: The study results show that the feeling of loneliness is present and experienced in a similar way by CRs, regardless of age and relationship to an ill person and that a need for action must derive from this. With the conceptual model, it is possible to offer versatile starting points for nursing practice, such as sensitization, to foster further research into the topic

Unterstützung für betreuende Angehörige in Einstiegs-, Krisen- und Notfallsituationen

Schlussbericht des Forschungsmandats G04 des Förderprogramms «Entlastungsangebote für betreuende Angehörige 2017–2020». Im Auftrag des Bundesamts für Gesundheit BAG, Bern