Background: With advances in medicine and technology, intensive care units (ICUs) have the capacity to treat patients who would have previously not been expected to survive and would therefore not have been managed in ICUs. When an individual is not expected to survive, doctors and nurses face the modern ethical dilemma of death associated with withdrawal of life-supporting strategies. The aim of this study was to identify difficulties perceived by ICU nurses providing end-of-life care (EOLC) in Poland.
Methods: The qualitative study was designed to investigate the difficulties, and the related barriers, to EOLC provided in ICUs in Poland. We conducted individual telephone interviews with ICU nurses from across Poland.
Results: The main issues raised during the interviews included (1) barriers attributable to the hospital, (2) barriers related to the patient’s family, and (3) barriers related to the ICU personnel providing direct EOLC. The interviewed nurses considered the lack of support from managers to be the main barrier. We found that ICU nurses in Poland dealt with end-of-life aspects that were emotionally and psychologically taxing. In addition, they lacked specialized training in this area, especially with regard to family care and care provision.
Conclusions: A pressing need exists to improve facilities and make equipment ensuring a desirable standard of care more available. Specialized palliative care training programs should be incorporated into compulsory nursing curricula for ICU nurses.
Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death.
Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents’ death.
Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis.
Results: nurses’ response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed.
Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
Introduction: Old age is usually the natural time for people to prepare for death, which may evoke various emotions ranging from acceptance to hostility.
Aim of the work: The study aimed at specifying various degrees to which elderly people accept death.
Material and method: The study employed the diagnostic poll method and an Inventory of the Attitude towards Death (IAD) poll questionnaire. The investigation was administered in a cohort of 150 people over 65 years of age living in Poland.
Results: The highest results were noted both for males and females on the "Value" scale (M = 4.94 and M = 4.96) and on the "Necessity" scale (M = 4.79 and M = 4.95). These two scales also had the highest values in the cohorts of city dwellers and country dwellers. A statistically significant difference (Z = 2.339, p = 0.019) was found in the "Necessity" dimension between investigated people with higher education and others. Furthermore, statistically significant differences were found in the following dimensions: "Mysteriousness", "Value", "Dread", "Tragedy", and "Absurdity". Comparing death dimensions in people with chronic illnesses and in those without such illnesses, meaningful statistical differences were noted in the "Necessity" dimension (t = 1.983, p = 0.049). However, analysing death dimensions in people who suffered because of a severe illness in a family member and respondents whose families were healthy, statistically significant differences were noted in the "Absurdity" dimension (t = 2.057, p = 0.041).
Conclusions: Sex, the place of residence, and death of a close person did not affect elderly people's acceptance of death. On the other hand, those suffering from chronic diseases were more aware of the inevitability of death. People without higher education were also more aware of the inevitability of death. Suffering of a serious disease of a close one considerably affected acceptance of death in the elderly.
Background: The increasing population of very old intensive care patients (VIPs) is a major challenge currently faced by clinicians and policymakers. Reliable indicators of VIPs' prognosis and purposefulness of their admission to the intensive care unit (ICU) are urgently needed.
Methods: This is a report from the Polish sample of the VIP1 multicentre cohort study (NCT03134807). Patients = 80 years of age admitted to the ICU were included in the study. Information on the type and reason for admission, demographics, utilisation of ICU procedures, ICU length of stay, organ dysfunction and the decision to apply end-of-life care was collected. The primary objective was to investigate the impact of frailty syndrome on ICU and 30-day survival of VIPs. Frailty was assessed with the Clinical Frailty Scale (= 5 points on a scale of 1-9).
Results: We enrolled 272 participants with a median age of 84 (81-87) years. Frailty was diagnosed in 170 (62.5%) patients. The ICU and 30-day survival rates were equal to 54.6% and 47.3% respectively. Three variables were found to significantly increase the odds of death in the ICU in a multiple logistic regression model: SOFA score (OR = 1.16; 95%CI 1.16-1.24), acute mode of admission (OR = 5.1; 95%CI 1.67-15.57) and frailty (OR = 2.25; 95%CI 1.26-4.01).
Conclusion: Measuring frailty in critically ill older adults can facilitate making more informed clinical decisions and help avoid futile interventions.
BACKGROUND: The need to provide care for the dying patient and his/her family may occur in every medical setting. Newly graduated nurses and physicians should therefore be prepared to deliver it at a high-quality level.
OBJECTIVES: To explore (a) the primary difficulties participants anticipate they will encounter whilst working with dying patients, (b) their interest in developing competencies in caring for dying patients, and (c) their interest in working in palliative/hospice settings or with dying patients in the future.
DESIGN: A cross-sectional study.
SETTINGS: A medical university in Poland.
PARTICIPANTS: Convenience sample of nursing (=112) and medical students (=101) at the end of their undergraduate education.
METHODS: Questionnaire distributed online and in hard-copy format.
RESULTS: Half of the participants anticipated experiencing various emotional and professional difficulties in caring for dying individuals, especially medical students. These difficulties pertained mostly the reaction of family members to the patient's death, addressing the psychological needs of the dying person, and coping with his/her own emotions when dealing with the patient's death. Students reported that working with dying patients could cause occupational stress - more so among medical students. The majority of them showed an interest in improving knowledge regarding palliative care and also in this case this was mostly true of medical rather than nursing students. However, more than half of the participants preferred avoiding work in palliative/hospice settings, with no differences between the two groups. Participants attributed this attitude to two factors: (a) the desire to avoid negative emotions and stress that could be triggered by dealing with death and dying; and (b) because they felt they lacked the required skills and personal abilities to handle such situations.
CONCLUSIONS: Undergraduate curricula that include strategies for coping with negative emotions associated with facing the process of death and dying should be developed. Interprofessional education should be encouraged, especially regarding the psychosocial aspects of end-of-life care.
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: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives.
METHODS: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus.
RESULTS: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland).
CONCLUSIONS: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.
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.
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.
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.
This paper focuses exclusively on inscriptions on roadside memorials. We conducted a review of studies of roadside memorial inscriptions and a field study of 29 inscriptions found on 156 roadside memorials in Poland to understand the similarities and differences between these inscriptions and those in other countries. The uniqueness of Polish inscriptions is their religious meaning. They reflect the inscription authors’ and/or the deceased’s relationship with Catholicism. We proposed a typology of inscriptions (limited and developed) that may be useful in further comparative studies on roadside memorialization.
The subject of the presented work was an attempt at optimization of the methods used for verification of the candidates for medical voluntary workers in a hospice and decreasing the danger of a negative influence of an incompetent volunteer on a person in a terminal stage of a disease and his or her relatives. The study was carried out in St. Lazarus Hospice in Krakow, Poland, and included 154 adult participants in four consecutive editions of "A course for volunteers - a guardian of the sick" organized by the hospice. In order to improve the recruitment of these workers, the hitherto methods of selection (an interview with the coordinator of volunteering and no less than 50% of attendance in classes of a preparatory course for volunteers") were expanded by additional instruments-the tests whose usefulness was examined in practice. Knowledge of candidates was tested with the use of a written examination which consisted of four open questions and an MCQ test comprising 31 questions. Practical abilities were checked by the Objective Structured Clinical Examination (OSCE). A reference point for the results of these tests was a hidden standardized long-term observation carried out during the subsequent work of the volunteers in the stationary ward in the hospice using the Amsterdam Attitude and Communication Scale (AACS). Among the tests used, the greatest value (confirmed by a quantitative and qualitative analysis) in predicting how a given person would cope with practical tasks and in contact with the sick and their relatives had a practical test of the OSCE type.
The goal of the presented research was to investigate if wisdom plays a mediating role in the relationships between meaning in life and the attitude toward death in the period of middle and late adulthood. A study was carried out that included 567 persons aged 40 to 75 years. Three measures were used: Personal Meaning Profile, Three-Dimensional Wisdom Scale, and Death Attitude Profile-Revised. The conducted analyses allowed the authors to confirm the mediating role of wisdom in the relationships between meaning in life and fear of death as well as death avoidance in persons during the period of middle and late adulthood.
INTRODUCTION: There is evidence that people with non-malignant disease receive poorer end-of-life (EOL) care compared to people with cancer. OBJECTIVES To assess the selected aspects of symptomatic treatment and communication between physicians and patients diagnosed with either advanced chronic obstructive pulmonary disease (COPD) or lung cancer.
METHODS: A questionnaire survey was conducted on-line among members of Polish Respiratory Society (PRS).
RESULTS: Correctly filled-in questionnaires were returned by 174 respondents (27.2% of those proved to be contacted by e-mail). In COPD, 32% of respondents always/often used opioids in chronic breathlessness and 18.3% always/often referred patients to palliative care (PC) specialist. Nearly 80% of respondents regarded bedside talks with people with COPD on EOL issues as essential, although only 20% would always/often initiate them. In people with lung cancer, opioids were routinely used for relief of chronic breathlessness by 80.0% of physicians; 81.7% referred patients to PC. More than half of the respondents always/often discussed EOL issues with only the patient's caregivers/relatives. Younger physicians, those caring for higher numbers of people with lung cancer and those who were better acquainted with PRS recommendations for PC in chronic lung diseases seemed to provide better EOL care for COPD patients.
CONCLUSIONS: People with COPD were seldom treated with opioids to relieve chronic breathlessness, or referred to PC consultation compared to people with lung cancer. Discussing the EOL issues with a patient was generally found challenging by physicians, and most often pursued with caregivers instead. COPD recommendations on PC may help to provide better EOL care by pulmonologists.
Aim of the study: The McGill Quality of Life Questionnaire has been widely used for people with life-threatening illnesses since 1996. In 2016 Cohen et al. revised the McGill Quality of Life Questionnaire and improved its psychometric properties and length. The aim of the present study was to adapt the McGill Quality of Life Questionnaire - Revised (MQOL-R) into Polish. The study assessed the factorial structure, reliability, and validity of the Polish adaptation of the MQOL-R.
Material and methods: The study had a non-randomised, cross-sectional design. The Polish translation of the MQOL-R was administered to 140 people with life-threatening illnesses. Patients were recruited from acute and palliative care units. Data were analysed using confirmatory factor analysis, and correlational and multiple regression analyses.
Results: The results provide support for the measurement structure of the Polish adaptation of the MQOL-R. Both the overall scale and four subscales have satisfactory internal consistency and the construct and concurrent validity.
Conclusions: The Polish MQOL-R is psychometrically sound and may serve as a valuable asset in research on quality of life of people with life-threatening illnesses.
Background: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors.
Objectives: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication.
Design: Cross-sectional survey.
Settings: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n=290).
Participants: Nurses and care assistants (n=1680) completed a self-efficacy scale and were included in the analyses.
Methods: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level.
Results: The proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]).
Conclusion: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.
Introduction: La France et la Pologne présentent un niveau de développement des soins palliatifs l’un des plus élevés dans le monde. Cependant, des différences existent en matière de sédation continue, maintenue jusqu’au décès (SCMJD), entre ces deux pays : la SCMJD étant un sujet très discuté en France et paraissant tabou en Pologne.
Objectif: Les objectifs opérationnels de cette étude étaient de : (1) mieux comprendre la construction des représentations sociales de la SCMJD faites par les médecins de soins palliatifs en France et en Pologne ; (2) explorer le contenu de l’information médicale délivrée aux malades ; (3) comprendre les convergences et les divergences entre les représentations et les pratiques de ces deux populations étudiées.
Méthode: Étude qualitative fondée sur des entretiens semi-directifs auprès de médecins exerçant dans des unités de soins palliatifs en France et en Pologne.
Résultats: Des divergences entre les représentations et les pratiques des médecins en France et celles des médecins en Pologne ont été observées ; une influence du contexte religieux ayant été identifiée chez ces derniers.
Discussion: Les résultats obtenus ont été discutés dans une approche interdisciplinaire à partir des notions philosophiques d’incertitude, de certitude, de mensonge stricto sensu et de mensonge par omission, montrant ainsi la nécessité d’une réflexion éthique dans la pratique quotidienne des médecins exerçant dans ces deux pays.
Conclusion: Cette étude demande à être complétée par d’autres investigations et ouvre diverses pistes européennes ou internationales à explorer, dans un souci d’amélioration des pratiques et de discussion éthique.
La sédation continue, maintenue jusqu’au décès (SCMJD) a pour but de soulager une souffrance ressentie comme insupportable par le patient et réfractaire à tout traitement, par l’abolition totale de vigilance. Le patient sédaté est calme et détendu mais privé de ses moyens d’expression, et ce, jusqu’au décès. Est-ce suffisant pour dire qu’il ne souffre pas ? L’objectif de cette étude était d’explorer les opinions des professionnels de santé à propos de l’efficacité de la SCMJD contre les symptômes réfractaires.
Recherche qualitative internationale avec étude de cas multiples fondée sur les données existantes et l’entretien semi-directif individuel. Elle a été réalisée dans deux pays européens : en France et en Pologne.
Au total, 13 USP ont été incluses, 197 dossiers médicaux ont été étudiés et 60 entretiens réalisés auprès de médecins et d’infirmières ont été inclus et analysés. La SCMJD était mise en œuvre pour un symptôme dit physique réfractaire, alors qu’en réalité elle était instaurée pour une souffrance morale réfractaire. L’efficacité de ce traitement n’était pas absolue pour tous les professionnels de santé.
Le seul critère permettant de juger de l’efficacité ou non de la SCMJD était fondé sur des représentations subjectives des professionnels de santé interrogés et non sur des critères scientifiques objectifs. Les résultats de notre étude montrent que, d’après les professionnels de santé interrogés, il est impossible, à ce jour, d’être certain de l’efficacité de la SCMJD contre la souffrance réfractaire, ou de l’évaluer de façon objective et rigoureuse.