Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium.

INTRODUCTION: Previous research has explored euthanasia's ethical dimensions, primarily focusing on general practice and, to a lesser extent, psychiatry, mainly from the viewpoints of physicians and nurses. However, a gap exists in understanding the comprehensive value-based perspectives of other professionals involved in both somatic and psychiatric euthanasia. This paper aims to analyze the interplay among legal, medical, and ethical factors to clarify how foundational values shape the ethical discourse surrounding euthanasia in both somatic and psychiatric contexts. It seeks to explore these dynamics among all healthcare professionals and volunteers in Belgium. METHODS: Semi-structured interviews were conducted with 30 Dutch-speaking healthcare workers who had encountered patients requesting euthanasia for psychiatric conditions, in Belgium, from August 2019 to August 2020. Qualitative thematic analysis was applied to the interview transcripts. FINDINGS: Participants identified three pivotal values and virtues: religious values, professional values, and fundamental medical values encompassing autonomy, beneficence, and non-maleficence, linked to compassion, quality care, and justice. These values interwove across four tiers: the patient, the patient's inner circle, the medical realm, and society at large. Irrespective of their euthanasia stance, participants generally displayed a blend of ethical values across these tiers. Their euthanasia perspective was primarily shaped by value interpretation, significance allocation to key components, and tier weighting. Explicit mention of varying ethical values, potentially indicating distinct stances in favor of or against euthanasia, was infrequent. CONCLUSION: The study underscores ethical discourse's central role in navigating euthanasia's intricate landscape. Fostering inclusive dialogue, bridging diverse values, supports informed decision-making, nurturing justice, and empathy. Tailored end-of-life healthcare in psychiatry is essential, acknowledging all involved actors' needs. The study calls for interdisciplinary research to comprehensively grasp euthanasia's multifaceted dimensions, and guiding policy evolution. While contextualized in Belgium, the implications extend to the broader euthanasia discourse, suggesting avenues for further inquiry and cross-cultural exploration.

Understanding the Experiences and Support Needs of Close Relatives in Psychiatric Euthanasia Trajectories: A Qualitative Exploration.

In Belgium, adults with psychiatric disorders can opt for euthanasia under strict conditions. The impact of these euthanasia trajectories on close relatives remains insufficiently studied. This research is the first in Belgium to explore the concrete experiences and support needs of relatives involved in psychiatric-based euthanasia trajectories by means of an in-depth interview study. The interviews with 18 relatives were conducted from March to May 2023 and analyzed using inductive thematic coding. The results reveal the complex and ambivalent emotional and cognitive experiences among relatives. Experiences with euthanasia trajectories varied from positive to negative, marked by shared feelings of surrealism and unreality. This included the farewell process that relatives go through, regardless of whether euthanasia was carried out. While the desired level of involvement varied, everyone sought some degree of recognition and understanding for their complex position during the euthanasia procedure, aiding in a better comprehension and contextualization of the request. The level of actual involvement and support depended on the stage of the euthanasia request, their social network, and the reasons behind the request. There was a demand for transparent communication, more emotional and practical support, and assistance in coping with the emotionally charged process. Specific attention is needed for the emotional and cognitive rollercoaster, even if euthanasia is not ultimately pursued. Future research should employ a longitudinal design to gain deeper insights into relatives' fluctuating experiences and support needs throughout euthanasia trajectories. Seeking greater context diversity and combining perspectives in cluster research can improve understanding of interconnected needs.

The impact of the euthanasia assessment procedure: a qualitative interview study among adults with psychiatric conditions.

BACKGROUND: Assisted dying for adults with psychiatric conditions (APC) is highly controversial but legally possible in a few countries, including Belgium. Previous research has suggested that the complex euthanasia assessment procedure may cause additional suffering in APC but may also induce positive experiences. This study reports on the impact of the euthanasia assessment procedure as experienced by APC on three counts: 1) their mental state, including death ideation; 2) their treatment trajectory; 3) their social relationships. METHODS: We performed an in-depth qualitative interview study with 16 APC in Flanders, Belgium, who had voiced a euthanasia request between 2016-2020. Thematic coding was used. FINDINGS: We interviewed 16 APC. Euthanasia assessment procedures brought out a plethora of experiences in APC, both favourable and unfavourable. Whereas thoughts of suicide remain present to a certain extent, being in the assessment procedure allows some APC to reconsider alternatives towards life, and also to attempt new treatment options. However, many APC experience ambivalence about the supposedly inherent desirability and dignity in euthanasia. Worries also surfaced about the rationale behind and effects of involvement of APCs' social circle, and about the impact it could have on them. CONCLUSION: Further research, including other stakeholder perspectives, is recommended with a view to maximising favourable and minimising unfavourable impacts for all involved. In clinical practice attention to these impacts is paramount, and clear communication and management of expectations between physician and patient, seems appropriate to address the many ambivalent experiences that accompany APC during the euthanasia assessment procedure. Policy attention could in this regard go to clarifying certain sources of ambivalence and issues that are insufficiently addressed, such as modalities of relatives' involvement.

Facilitating advance care planning in the general practice setting for patients with a chronic, life-limiting illness: protocol for a phase-III cluster-randomized controlled trial and process evaluation of the ACP-GP intervention.

BACKGROUND: Advance care planning (ACP), a process of communication about patients' preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practitioner (GP). The intervention to improve the initiation of ACP for patients with a chronic life-limiting illness in general practice (ACP-GP) includes an ACP workbook for patients, ACP communication training for GPs, planned ACP conversations, and documentation of ACP conversation outcomes in a structured template. We present the study protocol of a Phase-III randomized controlled trial (RCT) of ACP-GP that aims to evaluate its effects on outcomes at the GP, patient, and surrogate decision maker (SDM) levels; and to assess the implementation process of the intervention. METHODS: This RCT will take place in Flanders, Belgium. Thirty-six GPs, 108 patients with a chronic, life-limiting illness, and their (potential) SDM will be recruited, then cluster-randomized to the ACP-GP intervention or the control condition. The primary outcome for GPs is ACP self-efficacy; primary outcome for patients is level of ACP engagement. Secondary outcomes for GPs are ACP practices, knowledge and attitudes; and documentation of ACP discussion outcomes. Secondary outcomes for patients are quality of life; anxiety; depression; appointment of an SDM; completion of new ACP documents; thinking about ACP; and communication with the GP. The secondary outcome for the SDM is level of engagement with ACP. A process evaluation will assess the recruitment and implementation of the intervention using the RE-AIM framework. DISCUSSION: While the general practice setting holds promise for timely initiation of ACP, there is a lack of randomized trial studies evaluating the effectiveness of ACP interventions implemented in this setting. After this Phase-III RCT, we will be able to present valuable evidence of the effects of this ACP-GP intervention, with the potential for offering a well-tested and evaluated program to be implemented in general practice. The results of the process evaluation will provide insight into what contributes to or detracts from implementation success, as well as how the intervention can be adapted to specific contexts or needs. TRIAL REGISTRATION: Prospectively registered at with ISRCTN ( ISRCTN12995230 ); registered 19/06/2020.

Belgian psychiatrists' attitudes towards, and readiness to engage in, euthanasia assessment procedures with adults with psychiatric conditions: a survey.

BACKGROUND: Although the Belgian assessment pathway for legal euthanasia requires the engagement of at least one psychiatrist, little is known about psychiatrists' attitudes towards euthanasia for adults with psychiatric conditions (APC). This study aims to gauge psychiatrists' attitudes towards and readiness to engage in euthanasia assessment and/or performance procedures in APC. METHODS: This cross-sectional survey study was performed between November 2018 and April 2019. The survey was sent to a sample of 499 eligible psychiatrists affiliated to the Flemish Association for Psychiatry, a professional association that aims to unite and represent all psychiatrists working in Flanders, the Dutch-speaking, northern part of Belgium. The Association's members comprise an estimated 80-90% of all psychiatrists active in Flanders. Only psychiatrists working with APC (83% of the association's total membership) were included. Factorial Anova and Chi Square tests were performed to examine if and to what extent psychiatrists' backgrounds were associated with, respectively, their attitudes and their readiness to play a role in euthanasia procedures concerning APC. RESULTS: One hundred eighty-four psychiatrists completed the questionnaire (response rate 40.2%); 74.5% agree that euthanasia should remain permissible for APC. However, 68.9% question some of the approaches taken by other physicians during the euthanasia assessment and only half consider euthanasia assessment procedures compatible with the psychiatric care relationship. Where active engagement is concerned, an informal referral (68%) or preliminary advisory role (43.8%) is preferred to a formal role as a legally required advising physician (30.3%), let alone as performing physician (< 10%). CONCLUSION: Although three quarters agree with maintaining the legal option of euthanasia for APC, their readiness to take a formal role in euthanasia procedures appears to be limited. More insight is required into the barriers preventing engagement and what psychiatrists need, be it education or clarification of the legal requirements, to ensure that patients can have their euthanasia requests assessed adequately.

The engagement of psychiatrists in the assessment of euthanasia requests from psychiatric patients in Belgium: a survey study.

BACKGROUND: Since its legalisation in 2002, the number of times euthanasia has been carried out in response to requests from adults with psychiatric conditions (APC) has continued to increase. However, little is known about why and how psychiatrists become engaged in the assessment of such euthanasia requests. METHODS: A cross-sectional survey study was conducted between November 2018 and April 2019 of 499 psychiatrists affiliated with the Flemish Psychiatry Association. Chi square/Fisher's exact tests were performed to examine if, and to what extent, psychiatrists' backgrounds relate to their concrete experiences. The answers to the open question regarding motives for (non-) engagement were thematically coded. RESULTS: Two hundred one psychiatrists participated, a response rate of 40%. During their careers, 80% of those responding have been confronted with at least one euthanasia request from an APC patient and 73% have become involved in the assessment procedure. Their engagement was limited to the roles of: referring physician (in 44% of the psychiatrists), attending physician (30%), legally required 'advising physician' (22%), and physician participating in the actual administration of the lethal drugs (5%). Within the most recent 12 months of practice, 61% of the respondents have been actively engaged in a euthanasia assessment procedure and 9% have refused at least once to be actively engaged due to their own conscientious objections and/or the complexity of the assessment. The main motive for psychiatrists to engage in euthanasia is the patient's fundamental right in Belgian law to ask for euthanasia and the psychiatrist's duty to respect that. The perception that they were sufficiently competent to engage in a euthanasia procedure was greater in psychiatrists who have already had concrete experience in the procedure. CONCLUSIONS: Although the majority of psychiatrists have been confronted with euthanasia requests from their APC patients, their engagement is often limited to referring the request to a colleague physician for further assessment. More research is needed to identify the determinants of a psychiatrist's engagement in euthanasia for their APC patients and to discover the consequences of their non-, or their restricted or full engagement, on both the psychotherapeutic relationship and the course of the euthanasia request.

Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

BACKGROUND: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention. METHODS: Interviews with patients (n = 16 of which 11 dyadic with family caregivers), oncologists and GPs (n = 11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n = 8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks. RESULTS: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them. CONCLUSION: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

Discontinuation of medications at the end of life: A population study in Belgium, based on linked administrative databases.

AIMS: The aim of this study was to examine the use of potentially inappropriate medication (PIM) in relation to time before death, to explore whether PIMs are discontinued at the end of life, and the factors associated with this discontinuation. METHODS: We conducted a retrospective register-based mortality cohort study of all deceased in 2012 in Belgium, aged at least 75 years at time of death (n = 74 368), using linked administrative databases. We used STOPPFrail to identify PIMs received during the period from 12 to 6 months before death (P1) and the last 4 months (P2) of life. RESULTS: Median age was 86 (IQR 81-90) at time of death, 57% were female, 38% were living in a nursing home, and 16% were admitted to hospital between 2 years and 4 months before death. Overall, PIM use was high, and increased towards death for all PIMs. At least one PIM was discontinued during P2 for one in five (20%) of the population, and 49% had no discontinuation. Being hospitalized in the period before the last 4 months of life, living in a nursing home, female gender and a higher number of medications used during P1 were associated with discontinuation of PIMs (respective aOR [95% CI]: 2.89 [2.73-3.06], 1.29 [1.23-1.36], 1.26 [1.20-1.32], 1.17 [1.16-1.17]). CONCLUSION: Initial PIM use was high and increased towards death. Discontinuation was observed in only one in five PIM users. More guidance for discontinuation of PIMs is needed: practical, evidence-based deprescribing guidelines and implementation plans, training for prescribers and a better consensus on what inappropriate medication is.

Balancing medication use in nursing home residents with life-limiting disease.

PURPOSE: Balancing medications that are needed and beneficial and avoiding medications that may be harmful is important to prevent drug-related problems, and improve quality of life. The aim of this study is to describe medication use, the prevalence of deprescribing of medications suitable for deprescribing, and the prevalence of new initiation of potentially inappropriate medications (PIMs) in nursing home (NH) residents with life-limiting disease in Flanders. METHODS: NH residents aged ≥ 65, suffering from end stage organ failure, advanced cancer, and/or dementia (n = 296), were included in this cross-sectional study with retrospective analyses of medication use at the time of data collection (t2) and 3 to 6 months before (t1). The appraisal of appropriateness of medications was done using a list of medications documented as suitable for deprescribing, and STOPPFrail criteria. RESULTS: Residents' (mean age 86 years, 74% female) mean number of chronic medications increased from 7.4 (t1) to 7.9 (t2). In 31% of those using medications suitable for deprescribing, at least one medication was actually deprescribed. In 30% at least one PIM from the group of selected PIMs was newly initiated. In the subgroup (n = 76) for whom deprescribing was observed, deprescribing was associated with less new initiations of PIMs (r = - 0.234, p = 0.042). CONCLUSION: Medication use remained high at the end of life for NH residents with life-limiting disease, and deprescribing was limited. However, in the subgroup of 76 residents for whom deprescribing was observed, less new PIMs were initiated.

Barriers and enablers to deprescribing in people with a life-limiting disease: A systematic review.

BACKGROUND:: Knowing the barriers/enablers to deprescribing in people with a life-limiting disease is crucial for the development of successful deprescribing interventions. These barriers/enablers have been studied, but the available evidence has not been summarized in a systematic review. AIM:: To identify the barriers/enablers to deprescribing of medications in people with a life-limiting disease. DESIGN:: Systematic review, registered in PROSPERO (CRD42017073693). DATA SOURCES:: A systematic search of MEDLINE, Embase, Web of Science and CENTRAL was conducted and extended with a hand search. Peer-reviewed, primary studies reporting on barriers/enablers to deprescribing in the context of explicit life-limiting disease were included in this review. RESULTS:: A total of 1026 references were checked. Five studies met the criteria and were included in this review. Three types of barriers/enablers were found: organizational, professional and patient (family)-related barriers/enablers. The most prominent enablers were organizational support (e.g. for standardized medication review), involvement of multidisciplinary teams in medication review and the perception of the importance of coming to a joint decision regarding deprescribing, which highlighted the need for interdisciplinary collaboration and involving the patient and his family in the decision-making process. The most important barriers were shortages in staff and the perceived difficulty or resistance of the nursing home resident's family - or the resident himself. CONCLUSION AND IMPLICATIONS OF KEY FINDINGS:: The scarcity of findings in the literature highlights the importance of filling this gap. Further research should focus on deepening the knowledge on these barriers/enablers in order to develop sustainable multifaceted deprescribing interventions in palliative care.

Barriers to the early integration of palliative home care into the disease trajectory of advanced cancer patients: A focus group study with palliative home care teams.

OBJECTIVES: Palliative care is still often involved late in the disease trajectory. Recently, some studies have explored the barriers to early integration of PC in the hospital setting. Because palliative care home care (PHC) is organised differently compared with PC in a hospital setting, the identification of barriers to the early integration of PHC is needed. METHODS: Six focus groups were held with PHC teams in Flanders, Belgium. Discussions were transcribed verbatim and analysed using constant comparative analysis. RESULTS: Our findings confirm many barriers found in previous studies, such as the lack of financial resources and the perception of PC as terminal care. Oncologists' lack of knowledge about the content and role of PC is also confirmed. Furthermore, professional caregivers working in the home context are lacking information on oncology therapies necessary to provide optimal PC. A barrier for the home context is the discontinuity of care, as a result of a lack of communicational structure and a lack of central coordination. CONCLUSION: The results contribute to a better understanding of the factors hindering the provision of PHC alongside oncology care. For the home context, transmural discontinuity of care seems to be an important additional barrier.

Effect of early and systematic integration of palliative care in patients with advanced cancer: a randomised controlled trial.

BACKGROUND: The benefit of early integration of palliative care into oncological care is suggested to be due to increased psychosocial support. In Belgium, psychosocial care is part of standard oncological care. The aim of this randomised controlled trial is to examine whether early and systematic integration of palliative care alongside standard psychosocial oncological care provides added benefit compared with usual care. METHODS: In this randomised controlled trial, eligible patients were 18 years or older, and had advanced cancer due to a solid tumour, an European Cooperative Oncology Group performance status of 0-2, an estimated life expectancy of 12 months, and were within the first 12 weeks of a new primary tumour or had a diagnosis of progression. Patients were randomly assigned (1:1), by block design using a computer-generated sequence, either to early and systematic integration of palliative care into oncological care, or standard oncological care alone in a setting where all patients are offered multidisciplinary oncology care by medical specialists, psychologists, social workers, dieticians, and specialist nurses. The primary endpoint was change in global health status/quality of life scale assessed by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 items (EORTC QLQ C30) at 12 weeks. The McGill Quality of Life Questionnaire (MQOL), which includes the additional existential wellbeing dimension, was also used. Analysis was by intention to treat. This trial is ongoing, but closed for accrual, and is registered with ClinicalTrials.gov, number NCT01865396. FINDINGS: From April 29, 2013, to Feb 29, 2016, we screened 468 patients for eligibility, of whom 186 were enrolled and randomly assigned to the early and systematic palliative care group (92 patients) or the standard oncological care group (94). Compliance at 12 weeks was 71% (65 patients) in the intervention group versus 72% (68) in the control group. The overall quality of life score at 12 weeks, by the EORTC QLQ C30, was 54·39 (95% CI 49·23-59·56) in the standard oncological care group versus 61·98 (57·02-66·95) in the early and systematic palliative care group (difference 7·60 [95% CI 0·59-14·60]; p=0·03); and by the MQOL Single Item Scale, 5·94 (95% CI 5·50-6·39) in the standard oncological care group versus 7·05 (6·59-7·50) in the early and systematic palliative care group (difference 1·11 [95% CI 0·49-1·73]; p=0.0006). INTERPRETATION: The findings of this study show that a model of early and systematic integration of palliative care in oncological care increases the quality of life of patients with advanced cancer. Our findings also show that early and systematic integration of palliative care is more beneficial for patients with advanced cancer than palliative care consultations offered on demand, even when psychosocial support has already been offered. Through integration of care, oncologists and specialised palliative care teams should work together to enhance the quality of life of patients with advanced cancer. FUNDING: Research Foundation Flanders, Flemish Cancer Society (Kom Op Tegen Kanker).

Differences between early and late involvement of palliative home care in oncology care: A focus group study with palliative home care teams.

BACKGROUND: To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing. AIM: To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams. DESIGN: Qualitative study - focus group interviews. SETTING/PARTICIPANTS: Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists. RESULTS: Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks. DISCUSSION: Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.

Changes in medication use in a cohort of patients with advanced cancer: The international multicentre prospective European Palliative Care Cancer Symptom study.

BACKGROUND: Information on medication use in the last months of life is limited. AIM: To describe which medications are prescribed and deprescribed in advanced cancer patients receiving palliative care in relation to time before death and to explore associations with demographic variables. DESIGN: Prospective study, using case report forms for monthly data collection. Medication included cancer treatment and 19 therapeutic groups, grouped into four categories for: (1) cancer therapy, (2) specific cancer-related symptom relief, (3) other symptom relief and (4) long-term prevention. Data were analysed retrospectively using death as the index date. We compared medication use at 5, 4, 3, 2 and 1 month(s) before death by constructing five cross-sectional subsamples with medication use during that month. Paired analyses were done on a subsample of patients with at least two assessments before death. SETTING/PARTICIPANTS: We studied the medication use of 720 patients (mean age 67, 56% male) in 30 cancer centres representing 12 countries. RESULTS: From 5 to 1 month(s) before death, cancer therapy decreased (55%-24%), most medications for symptom relief increased, for example, opioids (62%-81%) and sedatives (35%-46%), but medication for long-term prevention decreased (38%-27%). The prevalence of chemotherapy was 15.5% in the last month of life, with 9% of new courses started in the last 2 months. With higher age, chemotherapy and opioid use decreased. CONCLUSION: Medications for symptom relief increased in almost all medication groups. Deprescribing was found in heart medication/anti-hypertensives and cancer therapy, although use of the latter remained relatively high.

Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study.

BACKGROUND: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. METHODS: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels. RESULTS: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions. CONCLUSION: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study.

Family physicians' role in palliative care throughout the care continuum: stakeholder perspectives.

BACKGROUND: While palliative care is still often viewed as care for the final stage of life provided usually by specialist health care professionals, ideally, a palliative care approach would start at an earlier stage, with an important role being assigned to the family physician (FP). However, the description of what the FP's tasks would be in the integration of a palliative care approach into the care continuum remains vague. OBJECTIVE: To explore the views of FPs, nurses and patients about the tasks of the FP in palliative care for people with a life-limiting illness from diagnosis onwards. METHODS: We performed 18 interviews with people with cancer, organ failure or dementia and 6 focus groups, 4 with FPs and 2 with community nurses. Analysis was guided by a thematic content analysis procedure to categorize perceived tasks into overarching themes. RESULTS: The tasks attributed to the FP could be categorized into four roles: FP as (i) available medical expert, (ii) communicator, (iii) collaborator and (iv) life-long learner committed to improving their palliative care competencies by training. Some perceived tasks varied depending on the different phases of illness (such as around diagnosis), while others were applicable throughout the whole illness course. Participants mostly had the same perception of the FPs' tasks, but there was disagreement on, for example, the timing of care planning. CONCLUSION: Our results help to elucidate the tasks and roles required of FPs to make integration of a palliative care approach into the care continuum possible.

Information preferences of the general population when faced with life-limiting illness.

BACKGROUND: Giving the public and the patients good information enables them to make effective choices about their care. This study describes public preferences for both themselves and their relatives on receiving information on end-of-life care topics when faced with a life-limiting illness and to identify associated factors. METHOD: This study used data from the cross-sectional Health Interview Study (HIS) 2008 that collected data from a representative sample (N = 9651) of the Belgian population. RESULTS: Around 82% of respondents wanted to be informed always about diagnosis, chances of cure and available treatments, 77% wanted to be informed on life expectancy, 72% on options regarding palliative care and 67% on possibilities of prolonging or shortening life. Around 55% wanted their relative to be informed always about diagnosis, chances of cure, life expectancy and different treatments available, whereas 50% wanted this in relation to the options regarding palliative care and 46% on the possibilities of prolonging or shortening life. Younger adults, people with more education and people with a regular GP were more likely to want to be informed always. Younger adults and women were less likely to want their relatives to be informed always. CONCLUSION: The majority of the Belgian population wants to be informed always about end-of-life care topics when faced with a life-limiting illness. Physicians should be aware of the desired level of information and tailor information to individual patient preferences. Understanding population preferences may help to tailor patient education and health promotion programmes appropriately.

Transitions between health care settings in the final three months of life in four EU countries.

BACKGROUND: Transitions between care settings may be related to poor quality in end-of-life care. Yet there is a lack of cross-national population-based data on transitions at the end of life. METHOD: International mortality follow-back study with data collection in Belgium, Netherlands, Italy and Spain (2009-11) via existing representative epidemiological surveillance networks of general practitioners (GPs). All general practitioners reported weekly, on a standardized registration form, every deceased patient (≥18 years) in their practice and identified those who died 'non-suddenly'. RESULTS: Among 4791 non-sudden deaths in Belgium, Netherlands, Italy and Spain, 59%, 55%, 60% and 58%, respectively, were transferred between care settings at least once in the final 3 months of life (10%, 8%, 10% and 13% in final 3 days of life); 10%, 5%, 8% and 12% were transferred three times or more (P < 0.001 in multivariate analyses adjusting for country differences in age, sex, cause of death, presence of dementia). In all countries, transitions were more frequent among patients residing at home (61-73%) than among patients residing in a care home (33-40%). Three months before death 5-7% of patients were in hospital, and this rose to 27-39% on the day of death. Patient wishes were cited as the reason for the last transition before death in 27%, 39%, 9% and 6% of cases in Belgium, Netherlands, Italy and Spain, respectively (P < 0.001). CONCLUSION: End-of-life transitions between health care settings are common across EU countries, in particular late hospitalizations for people residing at home. Frequency, type and reasons for terminal hospitalizations vary between countries.

The systematic early integration of palliative care into multidisciplinary oncology care in the hospital setting (IPAC), a randomized controlled trial: the study protocol.

BACKGROUND: Previous studies in the US and Canada, have shown the positive impact of early palliative care programs for advanced cancer patients on quality of life (QoL) and even survival time. There has been a lack of similar research in Europe. In order to generalize the findings from the US and Canada research on a larger scale, similar studies are needed in different countries with different care settings. The aim of this paper is to describe the research protocol of a randomized controlled trial, situated in Flanders, Belgium, evaluating the effect of systematic early integration of palliative care in standard oncology care. METHODS/DESIGN: A randomized controlled trial will be conducted as follows: 182 patients with advanced cancer will be recruited from the departments of Medical Oncology, Digestive Oncology and Thoracic Oncology of the Ghent University Hospital. The trial will randomize patients to either systematic early integration of palliative care in standard oncology care or standard oncology care alone. Patients and informal caregivers will be asked to fill out questionnaires on QoL, mood, illness understanding and satisfaction with care at baseline, 12 weeks and every six weeks thereafter. Other outcome measures are end-of-life care decisions and overall survival time. DISCUSSION: This trial will be the first randomized controlled trial in the Belgian health care setting to evaluate the effect of systematic early integration of palliative care for advanced cancer patients. The results will enable us to evaluate whether systematic early integration of palliative care has positive effects on QoL, mood and patient illness-understanding and which components of the intervention contribute to these effects. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT01865396 , registered 24(th) of May, 2013.

The prevalence in the general population of advance directives on euthanasia and discussion of end-of-life wishes: a nationwide survey.

BACKGROUND: To determine the extent to which members of the general population have talked to their physician about their wishes regarding medical treatment at the end of life, to describe the prevalence of advance directives on euthanasia, and to identify associated factors. METHOD: This study used data from the cross-sectional Health Interview Study (HIS) 2008 that collected data from a representative sample (N = 9651) of the Belgian population. RESULTS: Of all respondents, 4.4 % had spoken to their physician about their wishes regarding medical treatment at the end of life, while 1.8 % had an advance directive on euthanasia. Factors positively associated with discussions regarding wishes for medical treatment at the end of life were being female, being older in age, having poorer health status and having more GP contacts. People older than 55 years and living in Flanders or Brussels were more likely than the youngest age categories to have an advance directive on euthanasia. CONCLUSION: Younger people, men, people living in the Walloon region of Belgium, people without a longstanding illness, chronic condition or disability and people with few GP contacts could represent a target group for education regarding advance care planning. Public information campaigns and education of physicians may help to enable the public and physicians to engage more in advance care planning.