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.

Complex advance care planning intervention in general practice (ACP-GP): a cluster-randomised controlled trial.

BACKGROUND: Advance care planning (ACP) is an iterative communication process about patients' preferences for future care. In general practice, there are barriers to ACP at patient, GP, and healthcare-system levels. A complex intervention may be necessary to reduce barriers. AIM: To evaluate the effects of a complex ACP intervention for patients with chronic, life-limiting illness in general practice (ACP-GP). DESIGN AND SETTING: A cluster-randomised controlled trial was undertaken in Belgian general practice. METHOD: ACP-GP included a patient workbook, GP training, ACP conversations, and a documentation template. The control group received usual care. Outcomes were the 15-item ACP Engagement Survey for patients and the ACP Self-Efficacy scale for GPs. Linear mixed models evaluated differences at 3 months (T1, effectiveness evaluation) and 6 months (T2) post-baseline. Analysis was intention-to-treat. RESULTS: In total, 35 GPs and 95 patients were randomised. Patient ACP engagement did not differ between the intervention and control group at T1 (baseline-adjusted mean difference = 0.34; 95% confidence interval [CI] = -0.02 to 0.69; P = 0.062) or T2 (baseline-adjusted mean difference = 0.20; 95% CI = -0.17 to 0.57; P = 0.28). For GP ACP self-efficacy, there were no significant differences between groups at T1 (baseline-adjusted mean difference = 0.16; 95% CI = -0.04 to 0.35; P = 0.11) or at T2 (baseline-adjusted mean difference = 0.11; 95% CI = -0.09 to 0.31; P = 0.27). CONCLUSION: ACP-GP did not improve patient engagement and GP self-efficacy more than usual care. Both groups showed patterns of increase from baseline. Trial procedures and the COVID-19 pandemic may have increased awareness about ACP.

Advance care planning engagement in patients with chronic, life-limiting illness: baseline findings from a cluster-randomised controlled trial in primary care.

BACKGROUND: Advance care planning (ACP) has been characterised as a complex process of communication and decision making. For ACP behaviour change, underlying processes such as self-efficacy and readiness are needed. However, studies about which patient characteristics are associated with ACP have mainly focused on whether ACP actions are completed, leaving behaviour change processes unexplored. AIM: To assess whether patients' characteristics and patient-perceived quality of GP ACP communication were associated with patients' ACP engagement. DESIGN AND SETTING: Baseline data were used from the ACP-GP cluster-randomised controlled trial in patients with chronic, life-limiting illness (n = 95). METHOD: Patients completed questionnaires detailing demographic and clinical characteristics, and their perception about their GPs' ACP information provision and listening. Engagement was measured using the 15-item ACP Engagement Survey, with self-efficacy and readiness subscales. Linear mixed models tested associations with engagement. RESULTS: Demographic and clinical characteristics were not associated with engagement; nor was how much ACP information patients received from their GP or the extent to which the GP listened to what was important for the patient to live well or important to the patient regarding future care. Higher overall ACP engagement (P = 0.002) and self-efficacy (P<0.001) were observed in patients who gave a high rating for the extent to which their GP listened to their worries regarding future health. CONCLUSION: This study suggests that GPs providing information about ACP alone is not associated with a patient's ACP engagement; an important element is to listen to patients' worries regarding their future health.

Emotional cues and concerns of patients with a life limiting, chronic illness during advance care planning conversations in general practice.

OBJECTIVE: To explore a) to what extent patients with serious illness express emotional cues and concerns during advance care planning (ACP) conversations with their general practitioner (GP), b) the content of cues/concerns and c) GPs' responses to cues/concerns. METHODS: Cues/concerns and GPs' responses in 20 conversations were coded using the Verona Codes (VR-CoDES and Verona Codes-P). A qualitative thematic analysis was used to identify overarching themes within the content of the cues/concerns. RESULTS: A total of 216 cues/concerns were identified (range: 1-28; mean: 13) in 85% of conversations; with 85% of these being cues/implicit expressions of emotions. In 72% of responses, the GP provided space for the patient to elaborate on cues/concerns. The most common theme cues/concerns were expressed about was "the consequences of illness on quality of life and burdening others". CONCLUSION: Emotions were mainly communicated implicitly as cues and the content varied greatly. The amount of cues/concerns expressed show that ACP can evoke many emotions. PRACTICE IMPLICATIONS: GPs should be attentive to implicit expressions of emotions as these provide opportunities to engage patients in tailored ACP conversations. As patients expressed many cues/concerns, GPs are recommended to have recurrent conversations with patients and actively ask about diverse ACP topics.

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.

Concrete Experiences and Support Needs Regarding the Euthanasia Practice in Adults With Psychiatric Conditions: A Qualitative Interview Study Among Healthcare Professionals and Volunteers in Belgium.

Objective: Although euthanasia in the context of adult psychiatry is legalized in Belgium, it poses major ethical and clinical challenges for the health care professionals and volunteers involved. This study aimed to address these members' concrete experiences and support needs. Methods: A qualitative semi-structured interview study was conducted with 16 physicians and 14 other health care professionals and volunteers, with at least one concrete experience with euthanasia requests and procedures concerning adults with psychiatric conditions. Findings: Concrete experiences concerned the following 8 domains: (1) the impact of euthanasia on the clinical trajectory and (2) on the therapeutic relationship, (3) internal and (4) external collaborative partnerships, (5) patients' social inner circle (non-)involvement, (6) the use of recently published guidelines and, (7) the first criminal trials on this topic, and (8) the act of euthanasia. The following 8 main support needs emerged; (1) protocols addressing specific sub-populations and pathologies, (2) protocols specifically drawn up for non-medics, (3) guidance on how to adequately implement the two-track approach, (4) (after)care for patients, (5) (after)care for the health care team, (6) guidance on the patient's social inner circle involvement, (7) enhanced education measures, and (8) enhanced financial measures, including incentives for holistic, palliative care approaches. Conclusion: The health care professionals and volunteers reported many positive and negative experiences in dealing with euthanasia requests in adult psychiatry. They reported several support needs across the extensive euthanasia trajectory, pertaining to concrete management of thorny issues that guidelines do not (yet) touch on. Important implications of our study relate to tackling these existing issues, and to paying sufficient attention to the impact of a euthanasia trajectory on all actors, including the patients and their social inner circle, involved.

Phase 0-1 early palliative home care cancer treatment intervention study.

OBJECTIVES: Recent studies have shown that the early provision of palliative care (PC) integrated into oncology in the hospital has beneficial effects on the quality of life of people who are dying and their family caregivers. However, a model to integrate palliative home care (PHC) early in oncology care is lacking. Therefore, our aim is to develop the Early Palliative Home care Embedded in Cancer Treatment (EPHECT) intervention. METHODS: We conducted a phase 0-1 study according to the Medical Research Council framework. Phase 0 consisted of a literature search on existing models for early integrated PC, and focus groups with PHC teams to investigate experiences with being introduced earlier. In phase 1, we developed a complex intervention to support the early integration of PHC in oncology care, based on the results of phase 0. The intervention components were reviewed and refined by professional caregivers and stakeholders. RESULTS: Phase 0 resulted in components underpinning existing interventions. Based on this information, we developed an intervention in phase 1 consisting of: (1) information sessions for involved professionals, (2) general practitioner as coordinator of care, (3) regular and tailored home consultations by the PHC team, (4) a semistructured conversation guide to facilitate consultations, and (5) interprofessional and transmural collaboration. CONCLUSION: Taking into account the experiences of the PHC teams with being involved earlier and the components underpinning successful interventions, the EPHECT intervention for the home setting was developed. The feasibility and acceptability of the intervention will be tested in a phase II study.

Why adults with psychiatric conditions request euthanasia: A qualitative interview study of life experiences, motives and preventive factors.

OBJECTIVE: As the empirical picture of adults with psychiatric conditions (further referred to as 'patients') requesting euthanasia is still incomplete, this study aims to deepen our understanding of why these patients request euthanasia, how this relates to the option of suicide, and what could have prevented these patients from considering death and requesting euthanasia. METHODS: A qualitative study using in-depth, face-to-face interviews was conducted with 16 patients who had their euthanasia request under assessment in the period 2016-2020. Thematic coding was used. FINDINGS: Most patients were in a state of feeling emotionally worn-out as a result of the many accumulated misfortunes and setbacks, leading to the all-pervasive sense that life is no longer worth living. Whereas some patients reported lifelong adversity, others struggled predominantly in later life. Whereas some patients longed for death strongly, others expressed ambivalence towards death ideation, and some even requested euthanasia to hear of their ineligibility for it, to restore hope and to (re)find meaning in life. patients valued euthanasia over suicide as being more dignified and acceptable, both for themselves and for their inner circle. With regard to preventive factors, patients posited the need for improved accessibility and quality of mental healthcare, as well as a profound change in society's perception of, and support for, these patients. CONCLUSIONS: This study revealed the many complexities of euthanasia in the context of psychiatry, due to the many differences in patients' background characteristics, in their motives for requesting euthanasia, and the multi-layered aspects of mental suffering that go beyond the field of psychiatry.

Complex advance care planning interventions for chronic serious illness: how do they work: a scoping review.

CONTEXT: Advance care planning (ACP) interventions have the potential to improve outcomes for patients with chronic serious illness. Yet the rationale for outcome choices and the mechanisms by which outcomes are achieved are not always clear. OBJECTIVES: To identify and map proposed mechanisms on how complex ACP interventions can impact outcomes for patients with chronic serious illness and to explore factors that might explain intervention outcomes. METHODS: This is a scoping review of randomised controlled trials of complex ACP interventions for patients with chronic serious illness which explicitly stated the mechanism(s) by which the intervention was thought to work. We searched six databases and hand-searched key journals and reference lists. RESULTS: Inclusion yielded 16 articles. Inclusion procedures and mapping of mechanisms and outcomes indicated that causality between components and outcomes was not always clearly described. Tailoring intervention content to patients' needs was linked to the greatest number of different outcome categories, while promoting competence and confidence to engage in ACP was most often explicitly linked to a primary outcome. Three main factors which might have affected intended outcomes were identified: participant characteristics, such as illness experience or cultural differences; the setting of implementation; or methodological limitations of the study. CONCLUSION: Findings highlighted two main points of consideration for future ACP intervention studies: the need for clearly stated logic in how interventions are expected to impact primary outcomes and the importance of considering how an intervention may function for patients with chronic serious illnesses within a specific setting.

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.

'Advance care planning, general practitioners and patients: a phase II cluster-randomised controlled trial in chronic life-limiting illness'.

OBJECTIVES: Although general practice is an ideal setting for ensuring timely initiation of advance care planning (ACP) in people with chronic life-limiting illness, evidence on the effectiveness of ACP in general practice and how it can be implemented is lacking. This study aims to evaluate feasibility and acceptability of study procedures and intervention components of an intervention to facilitate the initiation of ACP in general practice for people with chronic life-limiting illness. METHODS: Pilot cluster-randomised controlled trial testing a complex ACP intervention in general practice versus usual care (ClinicalTrials.gov: NCT02775032). We used a mixed methods approach using detailed documentation of the recruitment process, questionnaires and semi-structured interviews. RESULTS: A total of 25 general practitioners (GPs) and 38 patients were enrolled in the study. The intervention was acceptable to GPs and patients, with GPs valuing the interactive training and patients finding ACP conversations useful. However, we found a number of challenges regarding feasibility of recruitment procedures, such GP as recruitment proceeding more slowly than anticipated as well as difficulty applying the inclusion criteria for patients. Some GPs found initiating ACP conversations difficult. The content of the patient booklet was determined to potentially be too complex for patients with a lower health literacy. CONCLUSION: Although the intervention was well-accepted by GPs and patients, we identified critical points for improvement with regard to the study procedures as well as potential improvements of the intervention components. When these points are addressed, the intervention can proceed to a large-scale, phase III trial to test its effectiveness.

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.

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.

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 effect of early and systematic integration of palliative care in oncology on quality of life and health care use near the end of life: A randomised controlled trial.

PURPOSE: This study evaluated the effect of early integrated palliative care (PC) in oncology on quality of life (QOL) near the end of life and use of health care resources near the end of life. METHOD: Patients with advanced cancer and a life expectancy of approximately 1 year were randomly assigned to either early and systematic integration of PC into oncological care (intervention) or standard oncological care alone (control). QOL was assessed with the EORTC QLQ-C30 global health status/QOL scale and McGill Quality of Life (MQOL) Single Item Scale and Summary Scale at baseline, 12 weeks and 6 weekly thereafter until death. Use of health care resources was collected from chart review in patient's electronic medical file for patients who died while participating in the study. RESULTS: Of the 186 randomised patients, 185 participants had a baseline measurement and were analysed. By November 2017, 128 patients had died while participating in the study. When applying the terminal decline model, patients in the intervention group scored significantly higher on global health status/QOL of the EORTC QLQ C30, at 6 months (difference: 5.9 [0.06; 11.1], p = 0.03), 3 (difference: 6.8 [1.0; 12.6], p = 0.02), and 1 month (difference: 7.6 [0.7; 14.5], p = 0.03) prior to the patient's death compared to the control group. Similar results were found for the Single Item Scale and Summary Score of the MQOL. We did not observe differences in use of health care resources between groups. DISCUSSION: Early integrated palliative care in oncology is a valuable approach since it also increases QOL near the end of life and not only soon after initiation of PC.

Quality of life and symptom intensity over time in people with cancer receiving palliative care: Results from the international European Palliative Care Cancer Symptom study.

BACKGROUND: People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity. AIM: To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care. DESIGN: Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to ≥8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death ≥6, 5-3 and 2-0 months). Linear mixed models were calculated. SETTING/PARTICIPANTS: A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included. RESULTS: In prospective analyses, quality of life, functioning and symptoms-except nausea/vomiting-remained generally stable over time. In retrospective analyses, patients 2-0 months before death reported significantly lower quality of life and physical functioning scores than those 5-3 months before death, who in turn scored lower than those ≥6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5-3 to 2-0 months before death. Nausea/vomiting only increased when comparing those ≥6 months before death with those 2-0 months before death. CONCLUSION: While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.

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 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.

Impact of palliative home care support on the quality and costs of care at the end of life: a population-level matched cohort study.

OBJECTIVES: To evaluate the impact of palliative home care support on the quality of care and costs in the last 14 days of life. DESIGN: Matched cohort study using linked administrative databases. SETTING: All people who died in Belgium in 2012 (n=107 847). PARTICIPANTS: 8837 people who received palliative home care support in the last 720 to 15 days of life matched 1:1 by propensity score to 8837 people who received usual care. INTERVENTION: Receiving the allowance for palliative home patients, multidisciplinary palliative home care team visit or palliative nurse or physiotherapist visit at home. MAIN OUTCOME MEASURES: Home death, number of family physician contacts, number of primary caregiver contacts, hospital death, hospital admission, intensive care unit (ICU) admission, emergency department (ED) admission, diagnostic testing, blood transfusion and surgery. Total inpatient and outpatient costs. All outcomes were measured in the last 14 days of life. RESULTS: In the unmatched cohort, 11 149 (13.5%) people received palliative home care support in the last 720 to 15 days of life. After matching, those using palliative home care support had, compared with those who did not, more family physician contacts (mean 3.1 [SD=6.5] vs 0.8 [SD=1.2]), more chance of home death (56.2%vs13.8%; relative risk [RR]=4.08, 95% CI 3.86 to 4.31), lower risk of hospital admission (27.4%vs60.8%; RR=0.45, 95% CI 0.43 to 0.46), ICU admission (18.3%vs40.4%; RR=0.45, 95% CI 0.43 to 0.48) or ED admission (15.2%vs28.1%; RR=0.54, 95% CI 0.51 to 0.57). Mean total costs of care were lower for those using palliative home care support (€3081 [95% CI €3025 to €3136] vs €4698 [95% CI €4610 to €4787]; incremental cost: -€1617 [p<0.001]). CONCLUSIONS: Palliative home care support use positively impacts quality of care and reduces total costs of care at the end of life in Belgium. Policy makers and healthcare practitioners should increasingly focus on communicating the existing options for palliative home care support to patients and their caregivers.

Use and timing of referral to specialized palliative care services for people with cancer: A mortality follow-back study among treating physicians in Belgium.

BACKGROUND: Referral to specialized palliative care services (SPCS) occurs often late in the illness trajectory but may differ across cancer types. We examined differences between cancer types in the use and timing of referral to specialized palliative care services (SPCS) and in the reasons for non-referral. METHODS: We conducted a population-based mortality follow-back survey among physicians who certified a representative sample of deaths in Flanders, Belgium. We focused only on sampled death cases of cancer (n = 2392). The questionnaire asked about the use of the existing types of SPCS and the timing of referral to these services. RESULTS: Response rate was 58% (1394/2392). Patients who died from breast, respiratory, head and neck, genitourinary or gastrointestinal cancer had higher chances of using SPCS compared to hematologic cancer patients. The most prevalent reason for non-referral was that regular care sufficiently addressed palliative and supportive care needs (51%). This differed significantly between cancer types ranging from 77,8% for breast cancer and 42.1% for hematologic cancer. A second prevalent reason for not using SPCS was that it was not meaningful (enough) (23.9%), particularly for hematologic malignancies (35,1%) and only in 5.3% for breast cancer. CONCLUSION: Differences in referral across different types of cancer were found. Referral is more often delayed or not initiated for patients with hematologic cancer, possibly due to differences in illness trajectory. An influencing reason is that physicians perceive palliative care as not meaningful or not meaningful enough for these patients which may be linked to the uncertainty in the disease trajectory of hematologic malignancies.