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Palliative care

FridayJuly 3rd8:00 - 9:00242 B

From legal concept to clinical meaning: how do general practitioners interpret unreasonable obstinacy.

Margaux LAVOILLOTTE

Introduction: The Léonetti Law of April 22, 2005 defines unreasonable obstinacy as any treatment that is useless, disproportionate, or has no other effect than the artificial maintenance of life. Its qualification, left to the physician’s judgment, allows for wide interpretation. At the same time, 80% of patients express the wish to die at home, where the general practitioner plays a central role in care. Decisions to discontinue treatment, both frequent and complex, represent a major challenge. This study explores how general practitioners interpret unreasonable obstinacy and how they integrate it into their practice.Objectives: To collect and compare general practitioners’ definitions with that set out in law, to analyze the distinction with the term “therapeutic obstinacy,” and to understand its clinical application as well as the factors influencing it.Methods: Qualitative study based on semi-structured interviews with general practitioners in private practice. Sampling was purposive, taking into account experience, practice setting, and palliative care training. Analysis was inspired by interpretative phenomenological analysis.Results: Participants’ personal definitions were heterogeneous yet coherent, centered on the meaning of life, dignity, and the patient’s wishes, within a dynamic approach. The legal definition was little known and reflected an ambivalent relationship to the law, perceived more as a symbolic framework than a decision-making tool. Interpretation resulted from the interaction between the physician—through both professional stance and personal background—the patient, family members, and the broader healthcare system.Discussion: The qualification of unreasonable obstinacy is evolving and cannot be confined to a fixed norm. Doubt permeates decision-making, and the guiding intention is decisive. Collegial deliberation and communication emerge as essential tools. The law, though broad in scope, provides protection when respected.Doubt runs through the entire process, and the physician’s intention plays a key role. The law provides a general framework that legitimizes and protects uncertain decisions. The physician’s position evolves with experience and professional role, while the patient and family express their expectations and fears. Legal constraints and pressures within the healthcare system also influence decisions. Interpreting unreasonable obstinacy emerges from a shared reflection seeking balance between life, dignity, and individual freedom.

Long-term qualitative evaluation of simulation-based end-of-life communication training for primary-care interdisciplinary teams

Tali SAHAR

Primary-care teams are central to providing end-of-life (EoL) care in the community, yet many clinicians feel underprepared for complex EoL conversations. Simulation-based training with professional actors may enhance communication skills, but evidence on long-term impact in community-based interdisciplinary teams is limited.We adapted a hospital-based EoL communication workshop to primary care using literature and stakeholder input. Eight clinics (8 interdisciplinary teams; 42 participants) attended a one-day workshop combining actor-led simulations, feedback and group discussions. Pre/post questionnaires, debriefs and 6- and 30-month interviews/focus groups were thematically analysed.Simulation with actors legitimised talking openly about death and dying. However, A single workshop can catalyse change but is not enough on its own; continuity and follow-up spaces are needed.Despite being a single-day intervention, the workshop appeared to shift how participants viewed and approached EoL conversations, increasing legitimacy and confidence while also surfacing feelings of isolation around EoL care. These findings support the idea that carefully designed, simulation-based training can influence both communication behaviour and the emotional climate around palliative care in the community. At the same time, the strong call for continuity suggests that workshops should be embedded within broader organisational support for primary-care palliative care.Simulation-based EoL communication training for interdisciplinary primary-care teams is feasible, acceptable and perceived as helpful in legitimising and improving difficult conversations. When paired with ongoing reflective spaces, it may strengthen person-centred palliative care in the community

Autonomy in adolescents in palliative care and its biopsychosocial impact: a systematic review

Joana BRANDÃO SILVA and Marco DE CANAVESES

Adolescence is a period of significant physical, psychological, and social changes, which can be intensified by the diagnosis of serious or chronic illnesses. This makes promoting autonomy in palliative care particularly challenging.The present review aimed to identify factors and strategies that promote the autonomy of adolescents in palliative care.We conducted a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, searching PubMed, Web of Science, and Scopus. This systematic review synthesized existing literature and evidence regarding communication, involvement, and psychosocial support strategies in adolescent palliative care. The study examined various tools and models, including Voicing My Choices, Building Our Solutions Together for Pediatric Advance Care Planning (BOOST-pACP), and the Family-Centered Advance Care Planning (FACE) model, to evaluate their effectiveness in facilitating communication, family support, and decision-making.Six studies were included. Adolescent autonomy in palliative care is affected by social, emotional, and clinical factors and varies throughout the disease course. Open communication, psychosocial support, and active involvement in decision-making are linked to increased autonomy and well-being. Family-centered advance care planning models and structured tools improve communication and alignment between adolescents’ and families’ preferences, although family dynamics and disease progression can still limit autonomyEffective communication tools and family-centered approaches are crucial for promoting adolescent autonomy. Strategies focused on open communication, psychosocial support, and active adolescent involvement in decisions can enhance autonomy, although further research is needed to assess their effectiveness.Implementing communication facilitation, psychosocial support, and adolescent involvement strategies is essential. Despite the need for more evidence, the review offers a set of recommendations to support the autonomy of adolescents in palliative care.

Providing early interventions for end-of-life patients through monitoring unplanned admissions

Navin Kumar GHOSH and Georgina DUNKINSON

Many patients receiving palliative care experience emergency admissions at the end of life (Pring et al., 2024; Mason et al., 2016). We started an initiative at our rural GP practice to identify patients requiring palliative care who present as unplanned admissions to A&E. We hypothesised that this would effectively identify these patients given the high rates of admission at the end of life. We aimed to facilitate early intervention by being aware of A&E admissions as opposed to hospital discharges. We systematically searched SystmOne twice weekly to capture all patients presenting to A&E. The data was reviewed each week and notes reviews were conducted, identifying patients with new or existing cancer diagnoses. We assessed palliative care needs and discussed these patients in our monthly multidisciplinary Gold Standard Framework meetings.  In September 2025, we conducted a retrospective notes review of palliative patients identified through their unplanned admission between January and July 2025 and assessed how this had affected their end-of-life care. 43 out of 218 A&E attendances (20%) related to 12 patients with a known or new palliative diagnosis. Of these 12 patients, 5 (42%) required further input from the surgery including end-of-life charts and replacing RESPECT forms lost during their A&E visits. 4 (33%) patients died in hospital or within 48 hours of discharge. 3 (25%) patients had hospital-initiated palliative care and we remained aware of their progress without needing to intervene.  Monitoring our unplanned admissions ensures we are aware of our end-of-life patients. In 42% of cases we find that we need to intervene, allowing us to be proactive with care we provide to patients and their families. Acting quickly is essential, as illustrated by our patients who passed away very soon after discharge. Monitoring unplanned admissions helps us to identify our end-of-life patients early and provide timely interventions.    References: Pring, A., Westwood, J., Bowtell, N. and Verne, J. (2024). 51 Emergency hospital admissions near the end of life. [online] doi:https://doi.org/10.1136/spcare-2024-mcr.47. Mason, E., Jenkins, D., Williams, M. and Davies, J. (2016). Unscheduled care admissions at end-of-life – what are the patient characteristics? Acute Medicine Journal, 15(2), pp.68–72. doi:https://doi.org/10.52964/amja.0609.

Quality Improvement Project in an East London GP practice: proactive identification of palliative patients using the Gold Standard Framework (GSF)

Ho Tsun Ivy NG

An ageing population and rising multimorbidity are increasing demand for palliative and end-of-life care. Despite its proven benefits in improving quality of life, over 100,000 people in the UK die each year without adequate palliative care.   This Quality Improvement Project (QIP) was conducted in an east London practice with a predominantly ethnic minority population, where barriers and facilitators to accessing care vary. Early identification of palliative needs is therefore essential. Use of the Gold Standards Framework (GSF) has been shown to achieve identification of 75-90% of palliative care patients on GP registers (GSF Centre in End of Life, 2016).To investigate whether application of the GSF improves identification of patients with palliative care needs.This QIP focused on patients with heart failure and dementia selected from the Quality and Outcomes Framework (QOF) registers. Records were reviewed using the GSF Proactive Identification Guidance (PIG, 7th Edition, 2022), applying the “surprise question” (“Would you be surprised if the patient were to die in next year, months, weeks or days?”) alongside general and disease-specific indicators of decline.The initial palliative care register included 26 patients. Of 166 records reviewed, (heart failure 130; dementia 36),13 were excluded (duplicates 6, death 1, already registered 6). Of 153 remaining, the surprise question identified 12; GSF criteria applied to the rest identified 16 more as potentially suitable for palliative care (28 in total).Applying GSF criteria to chronic disease registers can identify patients who may benefit from palliative care, and extending GSF to other disease-specific indicators may identify more suitable patients. Earlier recognition supports proactive advance care planning, reduces crisis admissions, and enables personalised, patient-centred care. The next step is to invite identified patients for discussion to assess needs and suitability for advance care planning. Subsequent follow-up would enable assessment of feasibility, acceptability, and impact, providing a stronger basis for evaluating whether wider implementation of the GSF tool is justified.The GSF PIG tool shows promise as a proactive, systematic method for identifying palliative care needs in primary care, with further evaluation required to determine its feasibility and value for wider implementation.

Incidences of antithrombotic therapy discontinuation, bleeding and thromboembolic events in patients with cancer during their last phase of life: insights from primary care consultations records

Carline VAN DEN DRIES

Given the lack of high-quality studies, it remains uncertain whether patients with cancer still benefit from antithrombotic therapy (ATT) in their last phase of life.We aimed to estimate incidences of ATT discontinuation, bleeding, venous thromboembolic (VTE), and arterial thromboembolic events (ATE) in patients with cancer during their last phase of life.We included patients ≥18 years with cancer at first reimbursement claim for general practitioner (GP) palliative care between 2018 and 2022 in the Netherlands. From this first claim onwards, we manually identified outcomes in free-text reports of routine primary care consultations. Patients were followed until death or loss to follow-up.Among 2860 included patients, 32.5% used ATT at the index date. The median age was 77 years (IQR 70-84) for ATT users and 73 years (IQR 64-82) for non-users. The median follow-up was 43 days (IQR 14-190) for ATT users and 42 days (IQR 13-149) for non-users. During follow-up, 22.6% of ATT users discontinued ATT, with a median of 8 (IQR 3-28) days before death. Bleeding occurred in 28.5% of ATT users and 22.0% of non-users. VTE occurred in 3.1% of ATT users and 3.0% of non-users and ATE in 2.5% of ATT users and 1.9% non-users.We manually coded all outcome events from free-text GP consultation reports, in contrast to most other studies in this field that rely on diagnosis codes and/or hospital data while end-of-life patients are often no longer referred to the hospital. Although we still had to rely on what GPs wrote down in the medical file, this approach created a very unique and rich dataset.One third of patients used ATT, and the minority discontinued treatment, usually shortly before death. We found high bleeding incidences in patients with cancer during the last weeks of life, especially among ATT users. Bleeding events largely outnumbered thromboembolic events, showing that the burden of “minor” bleeding events, including hematomas and urogenital bleedings, should not be underestimated. These findings provide new insights into ATT management and inform future research on optimizing ATT use in patients with cancer during their last phase of life.

Implementation of medication reviews in community primary palliative care: a qualitative study of patients’, relatives’ and primary healthcare practitioners’ experiences.

Jesse VAN WEELDEREN

Palliative care patients frequently use potentially inappropriate medications (PIMs), leading to negative health outcomes. Deprescribing remains poorly enacted in primary care. In the [XX] project, structured medication reviews were implemented in general practice clinics aimed at improving appropriate prescribing.To explore the experiences of palliative care patients, their relatives and primary healthcare practitioners (HCPs) regarding participation and engagement in medication reviews in general practice, and to understand their perceived impacts.Semi-structured interviews were conducted underpinned by a hermeneutic phenomenological approach. Participants were purposively recruited from five [XX] general practices and comprised community-dwelling older patients (³65 years) with advanced disease and a life expectancy <1 year who received a medication review within the [XX] project, their relatives, and primary HCPs. Data were analysed using inductive thematic analysis.Eight participants have been interviewed to date (1 pharmacist, 3 general practitioners (GPs), 2 patients, and 2 relatives), with interviews expected to be completed by February 2026. Four themes characterised participants’ experiences: (1) Value and timing: conversations were perceived as valuable, occasionally linked to improvements in physical symptoms, yet outcome and perceived benefit varied according to palliative stage and was constrained by prognostic uncertainty; (2) Affective reluctance: perceptions towards (de)prescribing were shaped by prior experiences, emotional concerns, or limited knowledge, prompting patient and HCP caution; (3) Shared decision-making: decision-making was collaborative and case-specific, often led by patient wishes. Sufficient time, clear explanations, and involvement of relatives enabled meaningful discussions; (4) Interprofessional collaboration: trusted, low-threshold collaboration between the executing HCP and GP was regarded beneficial, supported by clear considerations and minimal additional GP workload.-Medication reviews in community primary palliative care were viewed as valuable and may enhance appropriate prescribing and person-centred care. Reluctance to deprescribing appeared to arise from prognostic uncertainty and negative perceptions, alongside a desire to avoid harm, which led to HCPs acceding to patient wishes. Acceptance may be improved through person-centred dialogue, trusted interprofessional collaboration, and attention to emotional concerns and gaps in knowledge and communication skills. Future research should focus on reducing prognostic uncertainty and integrating implementation science to improve sustainable deprescribing, appropriate medication use, and quality of life.