In literature, obituaries from different cultures and languages have been studied on different levels and from different perspectives. One of the popular research topics is the use of metaphors, since metaphors help to cope with death, which in modern society is still a taboo. This article presents a bottom-up, primarily qualitative analysis of the metaphors in 150 obituaries of sportspeople, published in online versions of newspapers/magazines and on the Internet. As expected, the obituaries contain the traditional metaphors of death. Also more original, creative metaphors are introduced to describe death in a euphemistic way. Some of those have a link to sports but not systematically to the sport practiced by the deceased.
This study aims to elicit the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward dying, death, and the afterlife; to identify whether differences are observable between middle-aged and elderly participants and to document how the actual attitudes of our participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the belief in an omnipotent and omniscient God and in an afterlife strongly marks the attitudes of first- and second-generation Muslims in Belgium toward life and death.
Death discourse provides interesting material to determine how societies and cultures cope with death and the sorrow of losing a beloved one. Several aspects can be analyzed: content, language, design, and so on. This article describes a diachronic bottom-up analysis of the metaphorical language in 150 epitaphs from Belgian cemeteries. The analysis allows us to determine whether attitudes toward death and the taboo to talk directly about it have changed. Based on the existing frameworks, 13 recurring metaphors were identified and analyzed. Their occurrences are linked to the period in which they were written and the age and the gender of the deceased. Epitaphs are a stable genre on all levels of analysis. The results indicate that people are still reluctant to talk in a straightforward way about death as metaphors with positive connotations prevail.
OBJECTIVE: To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs).
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's visit were reported. Structured questionnaires were sent to the identified relatives of deceased residents.
SETTINGS AND PARTICIPANTS: A total of 736 relatives of deceased residents in 210 LTCFs (in Belgium, Finland, Italy, the Netherlands, and Poland).
METHODS: The Family Perception of Physician-Family Communication scale (FPPFC) was used to assess the quality of end-of-life (EOL) communication with physicians as perceived by relatives. We applied multilevel linear regression models to find factors associated with the FPPFC score.
RESULTS: The quality of EOL communication with physicians was perceived by relatives as higher when the relative spent more than 14 hours with the resident in the last week of the resident's life (b = 0.205; P = .044), and when the treating physician visited the resident at least 3 times in the last week of the resident's life (b = 0.286; P = .002) or provided the resident with palliative care (b = 0.223; P = .003). Relatives with higher emotional burden perceived the quality of EOL communication with physicians as lower (b = -0.060; P < .001). These results had been adjusted to countries and LTCF types with physicians employed on-site or off-site of the facility.
CONCLUSION: The quality of EOL communication with physicians, as perceived by relatives of dying LTCF residents, is associated with the number of physician visits and amount of time spent by the relative with the resident in the last week of the resident's life, and relatives' emotional burden.
IMPLICATIONS: LTCF managers should organize care for dying residents in a way that enables frequent interactions between physicians and relatives, and emotional support to relatives to improve their satisfaction with EOL communication.
BACKGROUND: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group.
AIM: To describe healthcare utilization at the end of life in patients who died from ALS.
DESIGN: We performed a retrospective cohort study using population-level administrative databases. The description of healthcare utilization was based on (1) validated quality indicators for end-of-life care, and (2) the European Federation of Neurological Societies guidelines on the clinical management of ALS.
SETTING: We included all people who died from ALS in Belgium between 2010 and 2015 (using ICD-10 code G12.2).
RESULTS: 1636 people died from ALS in Belgium between 2010 and 2015. The mean age at death was 71 years (SD11.3), and 56% were men. Specialized palliative care was used by 44% at some point in the last two years of life. In the last month of life, 13% received tube feeding, 48% received diagnostic testing, 41% were admitted to a hospital, and 25% were admitted to an emergency department. Medications were used mainly to treat pain (43%), insomnia and fatigue (33%) and thrombosis (32%); 39% used riluzole. Non-invasive ventilation was used by 18%. 39% died at home.
CONCLUSION: Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life.
BACKGROUND: Notwithstanding fears of overly permissive approaches and related pleas to refuse euthanasia for psychological suffering, some Belgian hospitals have declared that such requests could be admissible. However, some of these hospitals have decided that such requests have to be managed and carried out outside their walls.
MAIN TEXT: Ghent University Hospital has developed a written policy regarding requests for euthanasia for psychological suffering coming from patients from outside the hospital. The protocol stipulates several due care criteria that go beyond the requirements of the Belgian Euthanasia Law. For instance, the legally required first and second consulted physicians should all be psychiatrists and be affiliated with a psychiatry department of a Flemish university hospital. Moreover, euthanasia for psychological suffering can only be performed if the advices of these consulted physicians are positive. Importantly, preliminary reflection by the multidisciplinary Hospital Ethics Committee was introduced to discuss every request for euthanasia for psychological suffering coming from outside the hospital.
CONCLUSION: In this way, the protocol supports psychiatrists faced with the complexities of assessing such requests, improves the quality of euthanasia practice by ensuring transparency and uniformity, and offers patients specialised support and guidance during their euthanasia procedure. Nevertheless, some concerns still remain (e.g. relating to possible unrealistic patient expectations and to the absence of aftercare for the bereaved or for patients whose requests have been refused).
BACKGROUND: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries.
METHODS: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months.
RESULTS: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland).
CONCLUSIONS: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.
Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.
Objectives: to evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.
Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).
Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09–0.43, P = 0.003), nurses (0.59; 95% CI: 0.43–0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08–0.34, P = 0.002).
Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed.
Although palliative care nurses are identified as key players in supporting couples during advanced illness, there is a lack of evidence about their knowledge and experiences with this particular role. The aim of the study was to explore palliative care nurses' attitudes, roles, and experiences in addressing relationship functioning of couples in daily practice. A qualitative study was conducted using in-depth interviews, observational research, and peer debriefing groups with palliative care nurses in Flanders, Belgium. Nurses support relationship functioning by creating a couple-positive care environment, by being present/acknowledging feelings, and by rectifying imbalances between couples. They do so in a proactive way, backed up by team support. Nurses hesitate toward explicitly unraveling and intervening in relationship problems, in favor of providing comfort or offering a strengths-based approach. The findings offer an urgent call to enhance the educational programs for palliative care nurses by integrating the theories and practice frameworks that guide relational assessment and intervention, which are being used in family nursing.
This dissertation provided population-based insights in the use and timing of palliative home care for end-stage COPD in Belgium and tested the applicability of a model of early-integrated palliative home care for end-stage COPD in the Flemish health care setting.
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This book, written as a PhD dissertation, explores palliative care volunteering in the Flemish healthcare system through quantitative and qualitative studies from the perspective of health services, volunteers, patients, family caregivers and healthcare professionals.
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The present doctoral thesis focuses on evaluating the use, trends in use, factors that influence use, and the impact of using policy measures to support patients and informal caregivers to provide palliative care in the home or community setting in Belgium. Using full-population administrative databases containing information on all decedents in Belgium between 2010 and 2015, we provided insights into these patterns that allow formulating points of improvement, identification of focal groups for policy, but also allow evaluating the societal impact of the measures in tems of quality and costs of care.
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OBJECTIVE: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries.
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire.
SETTINGS AND PARTICIPANTS: 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland.
METHODS: The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types.
RESULTS: The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%).
CONCLUSION: The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life.
IMPLICATIONS: Training in end-of-life communication to physicians providing care for LTCF residents is recommended.
Transplantation of organs donated after euthanasia may help alleviate the critical organ shortage. However, aside from preliminary data on lung transplantation, data on graft and patient survival following transplantation of organs donated after euthanasia are unavailable. Because donation after euthanasia entails a period of detrimental warm ischemia that hampers graft survival, similar to donation after circulatory death, results after transplantation of this type of graft need to be carefully evaluated.
BACKGROUND: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed.
AIM: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care.
DESIGN: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses.
SETTING/PARTICIPANTS: Nurses or care assistants who are most involved in care for the resident.
RESULTS: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%-Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%-the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life.
CONCLUSION: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.
OBJECTIVES: To describe and compare euthanasia and physician-assisted suicide (EAS) practice in Flanders, Belgium (BE), the Netherlands (NL) and Switzerland (CH).
METHODS: Mortality follow-back surveys among attending physicians of a random sample of death certificates.
RESULTS: We studied 349 EAS deaths in BE (4.6% of all deaths), 851 in NL (4.6% of all deaths) and 65 in CH (1.4% of all deaths). People who died by EAS were mostly aged 65 or older (BE: 81%, NL: 77% and CH: 71%) and were mostly diagnosed with cancer (BE: 57% and NL: 66%). Home was the most common place of death in NL (79%), while in BE and CH, more variation was found regarding to place of death. The decision to perform EAS was more frequently discussed with a colleague physician in BE (93%) and NL (90%) than in CH (60%).
CONCLUSIONS: EAS practice characteristics vary considerably in the studied countries with legal EAS. In addition to the legal context, cultural factors as well as the manner in which legislation is implemented play a role in how EAS legislation translates into practice.
OBJECTIVE: During critical care, physicians are frequently confronted with bad-news communication because of patients' frail conditions. Delivering bad news is not easy, certainly not when patients from ethnic minority groups are involved. In this study we investigate the delivery of bad news in a multi-ethnic critical care context.
METHODS: Ethnographic fieldwork in one intensive care unit of a multi-ethnic urban hospital in Belgium. Data were collected through negotiated interactive observation, in-depth interviews and from reading patients' medical records. Data were thematically analysed.
RESULTS: Bad-news communication was primarily dominated by physicians. Patients' and relatives' input and other professionals' involvement in the communication was limited. Staff encountered ethno-cultural related difficulties, firstly, in choosing suitable conversation partner(s); secondly, in choosing the place of conversations and thirdly, in the information exchange. Staff usually tried to address these problems themselves on the spot in a quick, pragmatic way. Sometimes their approaches seemed to be more emotion-driven than well thought-out.
CONCLUSION: Delivering bad news in a multi-ethnic intensive care unit has a number of specific difficulties. These can have negative consequences for parties involved.
PRACTICE IMPLICATIONS: The challenges of an adequate delivery of bad news need a team-approach and a well thought-out protocol.
The aim of this exploratory survey was to provide an overview of physiotherapeutic and occupational therapeutic techniques and outcome measures applied in practice within palliative care. An anonymous web-based questionnaire was distributed to physiotherapists and occupational therapists in Flanders, Belgium between December 2017 and February 2018. A total of 91 respondents were included. Frequently applied interventions were: massage (51%), mobilization (49%), exercise therapy (46%), manual lymphatic drainage (42%), walking rehabilitation (40%) and breathing therapy (32%). Additional therapeutic aspects such as ‘comfort care’ and ‘creating a therapeutic alliance’ were mentioned by 34% of all therapists and cannot be ignored as an important part of treatment. Outcome measures were not always used to evaluate treatment because of time constraints and because progress was considered difficult to conceptualize in a palliative care context. The most frequently used outcome measures were a visual analogue scale (VAS) and the 6-minute walk test. In this study, the most frequently applied physiotherapeutic and occupational therapeutic interventions within palliative care were massage, mobilization and exercise therapy. However, therapists stress that these techniques are not mandatory, since care is always informed by the individual comfort and daily functioning of patients. Other than a VAS, outcome measures were used minimally.
Aims and objectives: To explore how community nurses (CNs) experience the collaboration with general practitioners (GPs) and specialist palliative home care team (PHCT) nurses in palliative home care and the perceived factors influencing this collaboration.
Background: The complexity of, and the demand for palliative home care is increasing. Primary palliative care is provided by CNs and GPs, often in collaboration with PHCT nurses. Although these professionals may each individually be part of a fixed team, a new temporary team is often composed for every new palliative patient. These membership changes, referred to as team membership fluidity, challenge professionals to work effectively.
Design and methods: A qualitative research design, using semi-structured interviews with CNs. Participant selection happened through regional palliative care networks in Belgium. The network's PHCT nurses selected CNs with whom they recently collaborated. Twenty interviews were conducted. A constant comparative analysis approach was used. COREQ guidelines were followed.
Results: Formal interprofessional team meetings were not common practice. The other's approachability and knowing each other positively influenced the collaboration. Time constraints, the GPs' lack of expertise, communication style, hierarchy perception and income dependency negatively influenced the collaboration with GPs and determined PHCT nurses' involvement. The coping strategies of CNs balanced between a behaviour focused to the patient and to the professional relationship. Specialist PHCT nurses were relied upon for their expertise but also to mediate when CNs disagreed with GPs.
Conclusion: Community nurses showed to be highly adaptable within the fluid team. Strikingly, dynamics described in the doctor-nurse game 50 years ago are still present today and affect the interprofessional communication. Interprofessional education interventions can contribute to improved interprofessional collaboration.
Relevance to clinical practice: The study findings uncovered critical knowledge gaps in interprofessional collaboration in palliative home care. Insights are relevant for and related to professional wellbeing and workplace learning.
Huit membres du personnel soignant belge échangent leurs point de vue sur la fin de vie, les soins palliatifs et la pratique de l'euthanasie. Ils évoquent leur expérience quotidienne et rendent compte de la complexité de certaines situations.