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Abstract Background A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the ‘slippery slope’ hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. Method We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. Results While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. Conclusion Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found.

CONTEXT: There is some consensus that a 'good death' is one which occurs at home, in the presence of loved ones, and is free of distress. Involvement of palliative care services is assumed to improve these circumstances. OBJECTIVES: This population-based study describes characteristics of the end of life of patients dying in Brussels and examines their associations with the involvement of palliative care services. METHODS: In 2007, an anonymous large-scale mortality follow-back survey was conducted in Brussels by mailing questionnaires regarding end-of-life care and characteristics to the attending physicians of a representative sample of 1961 deaths. RESULTS: Response rate was 41% (n=701). Of all deaths, 59% were nonsudden. Of these, 12% took place at home. For 27%, the attending physician was informed about the patient's preferred place of death. When the preference to die at home was known, 66% died at home. At the moment of death, in 47% of nonsudden deaths, loved ones were present. In a quarter of deaths, palliative care services were involved. Involvement with palliative care services was more likely for cancer patients than noncancer patients and was associated with the attending physicians more often being informed about the preferred place of death, with patients more often dying at home, with loved ones more often being present, and with a better feeling of well-being on the last day. CONCLUSION: Overall, circumstances at the very end of life are suboptimal in Brussels. This study provides a case for stronger involvement of palliative care as a focal point for policies to improve end-of-life circumstances in a metropolitan area such as Brussels. [ABSTRACT FROM AUTHOR]

Background: Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting., Objectives: This paper investigates the activities and outcomes of a compassionate community initiative-the Compassionate University program at the Vrije Universiteit Brussel in Belgium., Design: Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program., Methods: During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records., Results: Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university., Conclusion: The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s), 2024.)

Objectives: The need for public education on palliative care has been widely argued for. To develop effective educational strategies, a stronger evidence base is needed on what exactly is known and unknown about palliative care as well as what the differences are between subgroups., Methods: We conducted a cross-sectional population-based survey. Mail questionnaires were sent to a random sample of 4400 citizens (aged ≥16 years) within 4 municipalities in Flanders, Belgium. The Palliative Care Knowledge Scale (PaCKS) was used to measure knowledge. Associations between knowledge and sociodemographics and various experiential factors were tested, as well as the congruence between actual and self-perceived knowledge scores., Results: Response was obtained from 2008 (45.6%) citizens. The mean PaCKS score was 7.87 (SD 3.41; range 0-13) with the highest proportion (84.7%) correctly answering that palliative care is not specifically for older adults and the lowest (32.1%) correctly answering that improving the ability to participate in daily life is a palliative care goal. Being aged between 30 and 59, non-religious, more highly educated, having professional healthcare experience and knowing palliative care through personal experience were significantly associated with higher knowledge, while sex and informal caregiving experience were not. 52.4% self-perceived their knowledge as lower than it actually was., Conclusions: While the general public seems to be familiar with some basic concepts of palliative care, several key aspects remain unknown. Educational strategies, with suggested potential for community-based and experience-based approaches, may need to focus specifically on these aspects and not just on the broader palliative care concept., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Assisted dying, the practice whereby healthcare professionals provide lethal drugs to end the life of patients at their voluntary request, remains unlawful in the United Kingdom, despite multiple attempts to change the law during the past two decades. Using qualitative and quantitative research methods, our research analysed eight debates on this topic that have taken place in the Westminster Parliament between 2014 and 2022, with a view to (a) providing a detailed classification of the arguments used by Parliamentarians (b) establishing the range and balance of anecdotes, evidence and authority statements underpinning those arguments and (c) generating insights into relationships between these argumentative strategies and the stances and characteristics of the speakers. Supporters of change emphasise principles such as autonomy and compassion and make extensive use of anecdotes that describe awful deaths under the current arrangements. Opponents contend that vulnerable individuals will suffer pressure and abuse, that the health and social care system will be adversely affected, and that legalisation will inevitably lead to expansion in the eligibility criteria and the numbers ending their lives in this way. By promoting evidence-informed debate and closer scrutiny of the arguments deployed, the findings and discussion should be of interest to any legislative (or executive) bodies around the world that are contemplating a change in the law with respect to assisted dying., Competing Interests: Declarations of competing interest None., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Aim: This study aimed to evaluate changes over time in cause of death and making end-of-life decisions in preterm infants., Methods: A follow-back survey was conducted of all preterm infants who died between September 2016 and December 2017 in Flanders and Brussels, Belgium. Cause of death was obtained from the death certificate and information on end-of-life decisions (ELDs) through an anonymous questionnaire of the certifying physician. Results were compared with a previous study performed between August 1999 and July 2000., Results: In the cohort 1999-2000 and 2016-2017, respectively, 150 and 135 deaths were included. A significantly higher proportion of infants born before 26 weeks of gestation was found in the 2016-2017 cohort (53% vs. 24% in 1999-2000, p < 0.001). Extreme immaturity (<26 weeks) remained the most prevalent cause with a significant increase in the 2016-2017 cohort (48% vs. 28% in 1999-2000, p < 0.001). The overall prevalence of ELDs was similar across study periods (61%). Non-treatment decisions remained the most common ELD (36% and 37%)., Conclusion: Infants born at the limits of viability have become more prevalent among infant deaths, possibly due to a change in attitude towards periviable births. Neither the process of making ELDs nor the cause of death has changed over time., (© 2024 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs., Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed and what determines this willingness., Design: We applied a cross-sectional survey design., Methods: We distributed 4400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale of 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner., Results: A total of 2008 questionnaires were returned (45.6%). The average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company scored lowest. Factors associated with higher willingness included an optimistic outlook about receiving support from others, family caregiving experience and prior volunteering around serious illness or dying., Conclusion: People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience with illness, death or dying and when they felt supported by different groups of people. Community-based models that build support around people with care needs could explore to what extent this willingness translates into durable community support. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s), 2024.)

Purpose: Inadequate participation of Adolescents and Young Adults (AYAs) and parents are well-established barriers of transition. Shifts in roles are mandatory with increasing responsibilities for AYAs and decreasing involvement of parents in care. This study explores the shifts in roles of AYAs and their parents and its association with the subjective experience of transition., Methods: We conducted in-depth semi-structured interviews with AYAs living with Cystic Fibrosis and parents. Participants were recruited through patient organizations via convenience sampling and questioned on which roles they assumed during transition. Three authors performed an interpretative phenomenological analysis, establishing separate code trees for AYAs and parents. Data saturation was achieved., Results: 18 AYAs (age 21y±2.9) and 14 parents (age 50y±2.0) were included. We identified five common themes: (1) the reciprocal reliance between AYAs and parents, (2) the policies of physicians and hospitals, (3) the AYAs' changing appeal and need for support, (4) the identification of parents as co-patients, and (5) the enforced changes in the roles of parents. AYAs primarily addressed roles related to self-management, while parents discussed family functioning., Conclusions: This study identified motives underlying the assumption of roles by AYAs and parents. Both AYAs and parents addressed similar themes, highlighting their mutual challenges and needs. In contrast to AYAs, parents' desired roles were undefined and a latent sense of responsibility was identified as an important motive. Healthcare providers should acknowledge parents' challenging position and communicate transparently about changing roles. Additionally, healthcare providers should recognize that imposing restrictive roles may result in parental resistance, but can also foster AYAs' skill development. Future research should examine the short- and long-term impact of role-management interventions in AYAs and their parents., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.)

Serious illness, death, and bereavement are common experiences within the work and study context. This study aims to explore the experiences and support needs of university students and staff confronted with serious illness, death, and bereavement. Semi-structured interviews and focus groups were conducted with 21 students and 26 staff. A thematic analysis resulted in three overarching themes: the university as a high-pressure environment; navigating the complex university information and support system; and disenfranchized grief. Four themes were identified in terms of what participants needed from the university: clear processes and procedures; flexibility in policy application; proactive support and recognition; and activities to enhance awareness and interpersonal communication skills. Findings from this study could enable higher education institutions to become more compassionate schools and workplaces.

Medical Assistance in Dying (MAID) legislation has evolved rapidly in Canada with significant impacts on nursing practice. The purpose of this paper is to describe evolving complexities in legislative context and practice standards that influence the experiences nurse practitioners and registered nurses have with MAID. Qualitative interviews were conducted with 25 registered nurses and 10 nurse practitioners from diverse contexts across Canada. Participants described their practices and considerations when discussing MAID as part of advance care planning; their use of, and challenges with, waivers of consent; their practice considerations in negotiating the complexities of clients for whom death is not reasonably foreseeable; and their moral wrestling with the inclusion of MAID for persons whose sole underlying medical condition is mental illness. Findings illustrate the moral complexities inherent in the evolving legislation and the importance of robust health and social care systems to the legal and ethical implementation of MAID in Canada., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

We conducted a cross-sectional survey measuring the extent and nature of neighborhood participation regarding serious illness, death and loss and the factors that are associated with it. We distributed the survey to 2324 adult citizens in two neighborhoods in Flanders, Belgium, to which 714 citizens responded (response rate 30.7%). Of the respondents, 42.4% participated in at least one action in their neighborhood around serious illness, death, or loss, for 30.8% of them this participation was sporadic. Most of the respondents participated by helping neighbors (32.4%) or by volunteering (10.3%). We found a positive association between perceived neighborhood social cohesion (β = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (β = 0.158; CI = 0.204-0.586) and neighborhood participation around serious illness, death and loss. Future research should investigate strategies on how to move from death literacy developed through illness, caregiving and bereavement experiences to neighborhood participation around these topics.

Background: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests., Method: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation., Results: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia., Conclusions: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Ben P White and Lindy Willmott were engaged by the Victorian, Western Australian and Queensland governments to provide the legislatively mandated training for doctors and health professionals involved in voluntary assisted dying. Madeleine Archer was employed on the Western Australian and Queensland projects and contributed to the training content. Lindy Willmott has been appointed to the Queensland Voluntary Assisted Dying Review Board. The other authors have no interests to declare.

Context: Death and the process of dying have become increasingly medicalized and professionalized. The associated cultural estrangement from death may affect how comfortable we feel about death and dying. This study examines the general public's discomfort with another person's suffering and dying, and whether these feelings are associated with specific personal characteristics or experiences., Objectives: Cross-sectional survey in a random sample of people aged 16 or older in four municipalities in Flanders, Belgium (N=4400). We used the self-developed construct Discomfort with someone's suffering and dying. A directed acyclic graph guided the development of a multivariable regression model which explored the effect of different variables on the main outcome measure., Results: A total of 2008 completed questionnaires were returned (response rate: 45.6%). Average discomfort with someone's suffering and dying was 3.74 (SD = 0.89). Being female or currently mourning a loss were associated with more discomfort. Not being religious, having better knowledge about palliative care, having worked in healthcare, having been with someone else at the time of their death and having been culturally exposed to death and dying were associated with less discomfort., Conclusion: A considerable level of discomfort is present within the general public about the suffering and dying of others and this may increase social stigma and a tendency to avoid seriously ill people and their social surroundings. Our findings suggest that interventions may help shift this societal discomfort if they incorporate a focus on cultural and experiential exposure and increasing knowledge about palliative care., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: BPW and LW were engaged by the Victorian, Western Australian and Queensland governments to provide the legislatively mandated training for doctors and health professionals involved in voluntary assisted dying. MA is employed on the Queensland and Western Australian projects and contributed to the training content. LW has been appointed to the Queensland Voluntary Assisted Dying Review Board. All other authors declare that they have no competing interests.

Objectives: Research showed that people with young-onset dementia and their family caregivers raised the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may inform the evolving landscape of physician assisted dying. This study aimed to explore the considerations that people with young-onset dementia and their family caregivers expressed on euthanasia., Methods: A secondary qualitative analysis on interviews with 10 Belgian people with young-onset dementia and 25 family caregivers, using constant comparative analysis., Results: Respondents described similar contexts in which euthanasia had been discussed: the topic arose at 'key' moments, mostly with family caregivers, and was motivated by patients considering the impact of disease progression for themselves and their loved-ones. Caregivers shared opinions on the euthanasia law and discussed the emotional impact of discussing euthanasia., Conclusions: Considerations of people with young-onset dementia towards euthanasia appear rooted in personal, as well as in anticipated interpersonal and societal suffering. The negative image associated with dementia and dementia care seemed to influence people's expectations for and thoughts on the future., Practice Implications: Patient-physician communication should include detangling motives for euthanasia requests, openly discussing fears and reflecting on prognosis., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023. Published by Elsevier B.V.)

Objective: Congenital malformations are frequently diagnosed prenatally even at a viable stage. No adequate registration of incidence and characteristics of late termination of pregnancy (TOP) or abortion for medical reasons exists in Flanders., Methods: Nationwide mortality follow-back survey sent to physicians signing death certificates of all stillbirths for 22 weeks gestation onward (September 2016-December 2017) in Flanders, Belgium. Questions measured whether late TOP preceded stillbirth, and which clinical and sociodemographic characteristics were indicated. Questionnaire data were linked with sociodemographic information from death certificates., Results: Response rate was 56% (203/366). 38% of stillbirths (77/203) concerned late TOP. In 88.3% of late TOPs, physicians classified congenital anomalies of the foetus as serious or very serious (incompatibility with life outside the womb or severe neurological or physical impairment). In 26% of cases, late TOP was first suggested by the physician rather than spontaneously requested by parents (73%). 88% of late TOPs were discussed in open team meetings., Conclusions: 2/5 stillbirths were preceded by late TOP, indicating severe underreportation by existing registrations and a dire need for adequate registration methods. Although late TOP was most often explicitly requested by parents, in ¼ cases termination was suggested first by physicians. Parents are sometimes hesitant to bring up late TOP themselves, indicating that TOP should always be counselled as an equivalent option., (© 2023 John Wiley & Sons Ltd.)

Background: New public health approaches in palliative care attribute an active role to civic society in providing care for those who are seriously ill, caring, or bereaved. Accordingly, Civic Engagement In Neighbourhoods regarding serious illness, dying and loss (CEIN) are emerging worldwide. However, study protocols that advise on how to evaluate the impact and complex social change processes underlying these civic engagement initiatives are lacking., Objectives: The main objective of this study is to describe the study protocol for the evaluation of civic engagement initiatives in serious illness, dying, and loss in two neighbourhoods in Flanders, Belgium., Design: A convergent-parallel mixed-method process and outcome evaluation for the CEIN study., Methods & Analysis: We look at the evaluation of CEIN through a critical realist lens, thereby including the social, political, and economic determinants of social change in CEIN, the mechanisms to achieve this social change, the outcomes, and the mutual connection between these three aspects. We will conduct a convergent-parallel mixed-method process and outcome evaluation in which qualitative (i.e. observations, interviews, group discussions, and ego network mapping) and quantitative data (i.e. a pre-post survey) are simultaneously but separately collected and analysed and in the last stage combined by narrative synthesis., Discussion: This protocol illustrates the difficulty of operationalising the desired long-term impact of social changes regarding serious illness, dying, and loss into more manageable outcomes. We recommend a well-cogitated logic model that connects the outcomes of the study to its potential actions. Applying this protocol in practice is a constant exercise between providing sufficient flexibility to meet feasibility, desirability, and context-specific needs in the CEIN study and providing sufficient guidelines to structure and control the evaluation process., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2023.)

Background: In most jurisdictions where assisted dying practices are legal, attending physicians must consult another practitioner to assess the patient's eligibility. Consequently, in some jurisdictions, they can rely on the expertise of trained assisted dying consultants (trained consultants). However, these peer consultations remain under-researched. We examined the characteristics and outcomes of peer consultations to assess an assisted dying request with trained consultants, and explored how these characteristics influence the performance of assisted dying., Methods: We conducted a cross-sectional survey in 2019-2020 in Belgium among attending physicians who had consulted a trained consultant for an assisted dying request assessment ( N = 904)., Results: The valid response rate was 56% (502/903). The vast majority of attending physicians (92%) who had consulted a trained consultant were general practitioners. In more than half of the consultations (57%), the patient was diagnosed with cancer. In 66%, the patient was aged 70 or older. Reported as the patients' most important reasons to request assisted dying: suffering without prospect of improving in 49% of the consultations, loss of dignity in 11%, pain in 9%, and tiredness of life in 9%. In the vast majority of consultations (85%), the attending physician consulted the trained consultant because of the expertise, and in nearly half of the consultations (46%) because of the independence. In more than nine out of ten consultations (91%), the consultant gave a positive advice: i.e., substantive requirements for assisted dying were met. Eight out of ten consultations were followed by assisted dying. The likelihood of assisted dying was higher in consultations in which loss of dignity, loss of independence in daily living, or general weakness or tiredness were reasons for the request., Conclusion: Our findings indicate that the peer consultation practice with trained consultants is most often embedded in a primary care setting. Moreover, our study corroborates previous research in that assisted dying is performed relatively less frequently in patients with cancer and more often in patients with general deterioration. Our findings suggest that attending physicians hold peer consultations with trained consultants to endorse their own decision-making and to request additional support., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Vissers, Dierickx, Deliens, Mortier, Cohen and Chambaere.)

When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking.

Background: Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation., Aim: To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities., Methods: To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks., Results: Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT)., Conclusions: The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.

Compassionate Communities are places and environments in which people, networks, and institutions actively work together and are empowered to improve the circumstances, health, and well-being of those facing serious illness, death, dying, and loss. The study of their development, implementation, and evaluation requires an interdisciplinary research approach that has hitherto been lacking. In 2020, 8 research groups from 4 faculties at Vrije Universiteit Brussel united in the interdisciplinary Compassionate Communities Center of Expertise (COCO) to investigate Compassionate Communities. This article describes the first results of COCO: (a) an interdisciplinary mode of collaboration, (b) a shared conceptual understanding and definition of Compassionate Communities, and (c) a shared research agenda on Compassionate Communities., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background/objectives: Compassionate Cities are social ecology approaches that apply a set of actions, targeting a broad range of stakeholders, with the intention of renormalising caring, dying, loss and grieving in everyday life. While several initiatives have been described in the literature, a rigorous evaluation of their processes and outcomes is lacking. This article describes the protocol for a mixed-methods study to evaluate the development process and the outcomes of two Compassionate Cities in Flanders, Belgium., Methods and Analysis: We will use a convergent multiphase mixed-methods design, in which a combination of qualitative and quantitative data collection methods will be triangulated in the data analysis stage to capture both development processes and outcomes. Our design includes a quasi-experimental component of a quantitative outcome evaluation in both Compassionate Cities and two comparable control cities with no formal Compassionate City programme. Both Compassionate Cities will be co-created in collaboration with local stakeholders. A critical realism lens will be applied to understand how and why certain processes manifest themselves., Discussion: The creation of Compassionate Cities implies high levels of complexity, adaptivity, unpredictability and uncertainty. This requires various data collection methods that can be applied flexibly. A researcher taking on the role of active participant in the project's development has several advantages, such as access to scholarly information. Reflexivity in this role is paramount to questioning where the ownership of the project lies. By applying a critical realism lens, we remain cautious about our interpretations, and we test the homogeneity of our findings through other forms of data collection., Conclusion: This is the first published study protocol to describe both a process and outcome evaluation of a Compassionate City project. By transparently describing our aims and data collection methods, we try to maximise information exchange among researchers and to inform others who desire to implement and evaluate their own initiatives., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s) 2022.)

Background: End-of-life decisions with potential life-shortening effect in neonates and infants are common. We aimed to evaluate how often and in what manner neonatologists consult with parents and other healthcare providers in these cases, and whether consultation is dependent on the type of end-of-life decision made., Methods: Based on all deaths under the age of one that occurred between September 2016 and December 2017 in Flanders, Belgium, a nationwide mortality follow-back survey was performed. The survey asked about different types of end-of-life decisions, and whether and why parents and/or other healthcare providers had or had not been consulted., Results: Response rate was 83% of the total population. End-of-life decisions in neonates and infants were consulted both with parents (92%) and other healthcare providers (90%), and agreement was reached between parents and healthcare providers in most cases (96%). When medication with an explicit life-shortening intent was administered parents were always consulted prior to the decision; however when medication without explicit life-shortening intention was administered parents were not consulted in 25% of the cases., Conclusions: Shared decision-making between parents and physicians in case of neonatal or infant end-of-life decision-making is the norm in daily practice. All cases without parental consultation concerned non-treatment decisions or comfort medication without explicit life-shortening intention where physicians deemed the medical situation clear and unambiguous. However, we recommend to at least inform parents of medical options, and to explore other possibilities to engage parents in reaching a shared decision. Physicians consult other healthcare providers before making an end-of-life decision in most cases., (© 2022. The Author(s).)