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Background Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. Methods An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. Results One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. Conclusions Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is not well implemented in Belgian hospital practice. In order to obtain successful implementation, implementation theory states that the adopters should be involved in the implementation process. This information can serve as a basis for creating better implementation strategies.Aim: For this study, we asked hospitalized palliative patients and their families what they experienced as good advance care planning.Methods: Twenty-nine interviews were taken from patients and families, following the Tape Assisted Recall procedure of Elliot. These interviews were analyzed using content analysis based on grounded theory. To improve reliability, 3 independent external auditors audited the analysis.Results: Results show that hospitalized palliative patients and families want to have advance care planning communication about treatment and care throughout their disease and about different aspects: social, psychological, physical, practical, and medical. They prefer to have these conversations with their supervising physician. They report 4 important goals of advance care planning communication: establishing a trustful relationship with the physician, in which they feel the involvement of the physician; giving and receiving relevant information for the decision process, making a personal decision about which treatment and care are preferred; and finding consensus between the preferred decision of the physician, the patient and the family concerning the treatment and care policy.Conclusion: This study can contribute to advance care planning implementation in hospital practice because it gives in insight into which elements in advance care planning patients and families experience as necessary and when advance care planning is necessary to them. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is not well implemented in hospital. Implementation theory stresses the importance of knowing what hospitalised palliative patients and their families experience as barriers or as facilitators in the uptake of ACP with their treating physician. Aims: This study aimed to gain an in-depth understanding of what hospitalised palliative patients and their families experienced as barriers or facilitators for having ACP conversations. Methods: We used a tape-assisted recall procedure to conduct 29 videotaped interviews with hospitalised patients and their families. We used content analysis based on grounded theory principles. Results: Four major fields of tension were discovered: not knowing what to expect from the treating physician; not being sure the treating physician can be a trusted partner; daring to speak about ACP; and staying loyal to one's own wishes. Conclusions: Patients and families need physicians who are accessible and can be trusted ACP partners throughout the disease process. [ABSTRACT FROM AUTHOR]

In Belgium, Advance Care Planning (ACP) is not well implemented in hospital practice. One of the premises for successful implementation is involving the adopters in the implementation process. In hospital, important adopters of ACP are physicians, nurses, social workers, and psychologists. First, this study wants to understand what the characteristics are of ACP in hospital, according to professionals. Second, this study aims to give an insight in the experienced value of ACP. Third, the experienced barriers to have ACP conversations are explored. Twenty-four interviews were taken and analyzed with Content Analysis based on Grounded Theory. Three independent external auditors surveilled the analysis. ACP in hospital exists by the grace of the initiative of the actors involved in the case. Professionals perceive fields of tension between one another; barriers to ACP communication. ACP is mainly considered valuable because it is a process that creates time for exploration and reflection. [ABSTRACT FROM AUTHOR]

Background: Divergent opinions exist on what is correct and morally acceptable when it comes to the management of patients who are terminally ill and unable to maintain their own nutritional and hydration needs. This issue becomes even more problematic when it concerns patients for whom palliative sedation is considered. The aim of this study is to describe the evolution of oral and artificial food and fluid intake of patients residing in Flemish palliative care units and the possible effect of palliative sedation. Methods: A prospective longitudinal and descriptive design was used. Each patient admitted in one of the eight participating units was included if they met the inclusion criteria and gave written informed consent. Results: Two hundred and sixty-six patients were included. The incidence of palliative sedation was 7.5%.The oral food and fluid intake of these patients decreased during their stay and was reduced to a minimum a few days before death. With regard to the artificial food/fluid intake, this study reveals that only 28% of patients received artificial food and/or fluid. Moreover, it shows that the withdrawal is not a standard policy but is always based on a profound and individual decision-making process. An effect of initiating palliative sedation on the fluid intake is found, but is of no clinical relevance, in the sense that it would shorten the life of the patient. Conclusions: This longitudinal prospective study does not support the argument that palliative sedation amounts to 'slow euthanasia' because it entails the withholding or withdrawing of substantial amounts of food and or fluids, thus having a clear life-shortening effect. This study shows that palliative sedation, in specialized palliative care units, is not slow euthanasia but advanced symptom control during the final days of terminally ill patients' lives who are confronted with refractory suffering. [ABSTRACT FROM AUTHOR]

Policy makers and health care payers are concerned about the costs of treating terminal patients. This study was done to measure the costs of treating terminal patients during the final month of life in a sample of Belgian nursing homes from the health care payer perspective. Also, this study compares the costs of palliative care with those of usual care. This multicenter, retrospective cohort study enrolled terminal patients from a representative sample of nursing homes. Health care costs included fixed nursing home costs, medical fees, pharmacy charges, other charges, and eventual hospitalization costs. Data sources consisted of accountancy and invoice data. The analysis calculated costs per patient during the final month of life at 2007/2008 prices. Nineteen nursing homes participated in the study, generating a total of 181 patients. Total mean nursing home costs amounted to 3,243 € per patient during the final month of life. Total mean nursing home costs per patient of 3,822 € for patients receiving usual care were higher than costs of 2,456 € for patients receiving palliative care ( p = 0.068). Higher costs of usual care were driven by higher hospitalization costs ( p < 0.001). This study suggests that palliative care models in nursing homes need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. [ABSTRACT FROM AUTHOR]

Background: In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. Methods: A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Results: Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. Conclusions: This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians., Methods: This Belgian nationwide qualitative study follows a grounded theory approach . We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven , and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ)., Results: Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient's demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians' inner conviction about the need of PS-ES., Significance of Results: Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.

Palliative cancer patients are faced with multiple symptoms that threaten their quality of life. To manage these symptoms, a reliable and valid way of registration is crucial. In this study, the Edmonton Symptom Assessment Scale (ESAS) has been translated, modified, and tested on content, face, criterion, construct validity, and internal consistency for patients admitted to Flemish palliative care units. These aspects are tested in a descriptive, comparative, longitudinal study based on 3 convenience samples. The first consisted of 8 palliative care experts. The second sample checked the face validity and consisted of 4 patients, 5 family members, and 5 nurses. The last sample involved 23 patients admitted to 3 Flemish palliative care units. Heedful of the "new-wave" vision on validity, the translated and altered ESAS seemed a suitable instrument for the symptom assessment of patients with cancer admitted to a palliative care unit.

Purpose: 18F-fluorodeoxyglucose (FDG) and 11C-methionine (MET) PET imaging studies allow the investigation of metabolism and amino acid transport in brain tumours. Their (relative) usefulness and prognostic value in suspected recurrence or progression of primary brain tumours after previous therapy is an issue of debate. The aim of this study was to compare directly both radioligands in this setting., Methods: Cerebral uptake of FDG and MET was determined sequentially on the same day in 30 patients (21 males, nine females; age 40.4+/-15.6 years), on average 4.0 years (range 0.1-18) after therapy for a primary brain tumour (23 grade II-IV astrocytomas, four oligodendrogliomas and three mixed oligo-astrocytomas). Images were acquired on a Siemens HR+ dedicated PET camera. Two observers scored FDG and MET scans independently. Semi-quantitative indices defined by the tumour (maximum)-to-background ratio were calculated based on manual ROI delineation and by using MET ROIs for FDG after automated co-registration. Patient follow-up was conducted until the last contact with inconspicuous clinical findings (average 41 months, range 12-62 months after PET) [(n=10)] or until death (n=20)., Results: Overall median survival was 15.0 months. MET showed pathologically increased uptake in 28/30 scans, and FDG in 17/30. The inter-observer agreement was 100% for MET and 73% for FDG. Using Kaplan-Meier survival analysis, significant differences were found for both FDG (cut-off 0.8, log-rank p=0.007) and MET (cut-off 2.2, log-rank p=0.014). The combination of FDG and MET information resulted in the highest prognostic accuracy (p=0.003), while MET alone was the best prognostic predictor in the subgroup of patients with primary astrocytoma (n=23)., Conclusion: FDG and MET PET studies provide complementary prognostic information in patients with suspected brain tumour recurrence or progression after primary therapy. MET is considered the single agent of choice in the evaluation of these patients because of its sensitivity and clearer delineation of the suspected recurrence.