Palliative Medicine

Experiential studies on healthcare professionals’ approaches to loss and grief discussions with parents of children with severe neurological impairment are needed to understand grief experiences of this emerging population

This study aimed to explore healthcare professionals’ experiences regarding their approach to these discussions, as well as to gather recommendations for best practices in initiating these conversations.

A qualitative exploratory study was conducted. Transcripts were analysed using reflexive thematic analysis, adhering to the reflexive thematic analysis reporting guidelines (RTARG).

The study purposively sampled healthcare professionals (n = 20) from medical, health, allied health, and social care disciplines. Participants were recruited within hospital, hospice, community, and disability settings in Ireland.

Four key themes were identified during the analysis: (1) Conversations with a Purpose, (2) Being Receptive to Moments for Grief Talk, (3) It’s the Parent’s Story, and (4) A Skilled and Compassionate Workforce. They represent how professionals purposefully engaged in loss and grief discussions, attuning to moments when parents were receptive to such discussions. Professionals emphasised the need to respect parents’ autonomy in seeking and accepting grief support. Compassionate communication was central to these discussions.

This study represents a foundational step in understanding how professionals approach discussions of loss and grief. The themes underscore the need for increased awareness among professionals to ensure grief support is available at the level of contact, as advocated by the public health model of bereavement support. This study emphasises the importance of supporting bereavement care throughout the condition trajectory.

Previous studies show ambiguous results concerning quality of palliative care among patients with severe mental disorders, defined as schizophrenia, moderate to severe depression, and bipolar disorders.

To investigate quality in specialist palliative care among Danish patients with pre-existing severe mental disorders using data from the Danish Palliative Database.

Danish cohort study linking data from the Danish Palliative Database and hospital medical files.

All adult decedents in 2023 from Central Denmark Region affiliated with specialist palliative care. Hospital records were screened for severe mental disorders. Quality indicators included: Place-of-death, days from referral to death, specialist palliative care waiting time, discussion at multidisciplinary conferences and completion of symptom assessment.

Of 1869 patients, 80 (4.3%) had pre-existing severe mental disorders. Compared to patients without mental disorders, these patients died younger and more often from non-cancer conditions. They were less likely to complete symptom assessment (Risk Ratio (RR): 1.49 (95% CI: 1.15;1.95)). Those who also received active psychiatric treatment experienced longer waiting times for specialist palliative care (Mean ratios (MR): 3.48 (95% CI: 1.06;11.39)) and shorter palliative care pathways (MR: 0.44 (95% CI: 0.20;0.96)) than patients without active psychiatric treatment.

Danish patients with active severe mental disorders were less likely to complete symptom assessment, had longer waiting times and shorter specialist palliative care pathways. Future efforts should focus on timely access to specialist palliative care and health professionals supporting completion of symptom assessments in this population.

Healthcare assistants delivering home-based palliative and end-of-life care face complex emotional and clinical demands with limited workplace support. Peer support had been suggested as a potential solution, yet no reviews of such interventions exist.

To understand and explain how, why, for whom and in what contexts workplace peer support interventions for healthcare assistants work (or do not work) in palliative and end-of-life care delivery at home.

Realist review registered with PROSPERO (registration number CRD42024606133).

CINAHL, MEDLINE, AMED, Scopus and grey literature with no date restrictions. Searches undertaken November-December 2024. All study designs containing data relevant to programme theory were included. Evidence was assessed for relevance, trustworthiness and rigour.

Synthesis of 24 sources generated 12 context-intervention-mechanism-outcome configurations used to develop initial programme theory. Four workforce outcomes of intervention include: enhanced wellbeing and resilience, reduced loneliness and isolation, development of a sense of community of practice and strengthened role identity. Three intervention strategies: peer-facilitated group meetings, 24/7 peer support access, and informal peer mentorship, create psychologically safe spaces, where individuals feel validated, valued, connected with others, enabling social learning. The intervention elements align with the fulfilment of three basic psychological needs: competence, autonomy, and relatedness.

The initial programme theory reveals peer support may address core workforce challenges through psychologically safe peer connections and social learning, aligning with fulfilment of basic psychological needs. It provides a foundation for designing and testing evidence-informed peer support interventions for this workforce.

Despite policy and health service imperatives for public involvement to be embedded within palliative care research, this practice is not commonplace. Few empirical studies have sought to explore and evaluate models of public involvement for palliative care.

To explore experiences of public involvement within palliative care, and to identify enablers for successful models of involvement.

An exploratory qualitative design was utilized. Semi-structured interviews were conducted via zoom or telephone, and interview transcripts were subjected to inductive thematic analysis.

Purposive sampling of 23 participants with experience of public involvement in palliative care or related areas, across different health institutions in Australia and the United Kingdom, including public members and public involvement program coordinators.

Twelve public members and 11 program coordinators described their experience with public involvement in a palliative or related healthcare setting. Three themes emerged relating to successful involvement (1) Relationship building and maintenance: opportunities to enhance team familiarity, early involvement, consistent point of contact, and inclusion of more than one public member. (2) Clarity around goals of involvement: flexible roles and processes, ongoing communication, formal recognition of public input. (3) Training and support: mentoring opportunities, upskilling for public members and researchers. These enablers promoted a collegial atmosphere that enhanced personal and collective experiences of public involvement.

This study reveals enablers that potentially shape the extent and effectiveness of public involvement in palliative care. Integrating these enablers has implications for future models of public involvement in palliative care and potential for enhanced research outcomes.

Fever is a frequent but complex symptom in adults with a limited prognosis, arising from multifactorial causes beyond infection. Despite its impact on symptom burden and therapeutic decision-making, evidence from inpatient palliative care settings is limited.

To assess the prevalence, characteristics, and associated factors of fever in adults with a limited prognosis receiving inpatient hospice palliative care in order to enhance understanding of this symptom in palliative care settings.

Prospective observational cohort study. Collected data included demographic and clinical variables, symptom burden, potential risk factors for infections (such as presence of medical devices and pressure injuries), and fever occurrence. Univariate and multivariate logistic regression analyses were performed to identify independent predictors of fever.

The study was conducted in an inpatient hospice palliative care unit within the Luigi Sacco Hospital in Milan, Italy (January and December 2024). A total of 145 adults with a limited prognosis were enrolled.

Fever occurred in 40% of patients, with a median onset of 5.5 days after admission. In 39.7% of cases, fever was attributed to infections, mainly catheter-associated urinary tract infection. Medical devices, particularly bladder catheters (89.7%), were strongly associated with fever (adjusted odds ratio: 12.42; confidence interval: 2.39–64.57).

Fever is common among adults receiving inpatient hospice palliative care and is infection-related in about 40% of cases. Its strong association with medical devices highlights the need for proportional, personalised interventions that primarily consider prognosis, symptom relief, and quality of life.

ClinicalTrials.gov ID NCT07106073

Death anxiety is common in advanced cancer, but little is known about risk factors for its occurrence, frequency or severity in those receiving specialized palliative care.

This study aimed to determine the prevalence and correlates of death anxiety in outpatients with advanced cancer receiving specialized palliative care.

Cross-sectional observational study.

We identified the prevalence of death anxiety in 203 patients with advanced cancer attending an outpatient palliative care clinic in a large tertiary care hospital, and examined its association with sociodemographic factors, time since advanced cancer diagnosis, time since initial palliative care consultation, and proximity to death. Death anxiety was measured using the Death and Dying Distress Scale (DADDS). Variables that demonstrated significant univariable associations were subsequently included in a multivariable regression analysis.

Moderate to severe death anxiety (DADDS score ⩾ 25) was reported by 46.3% of participants. Multivariable analysis demonstrated that greater death anxiety was associated with lower household income (⩾$100,000+ vs <$30,000: ß = −0.30, p = 0.002; $60,000–$99,999 vs <$30,000: ß = −0.27, p = 0.004; $30,000–$59,999 vs <$30,000: ß = −0.31, p < 0.001) and living alone (ß = 0.16, p = 0.03), but not with time since advanced cancer diagnosis or initial palliative care consultation, or with proximity to death.

Moderate to severe death anxiety is reported by almost half of patients with advanced cancer receiving outpatient palliative care and is associated with economic disadvantage and solitary living arrangements. Further research is needed to determine to what extent targeted psychosocial and palliative interventions can alleviate such distress in this population.

Older adults with advanced heart failure experience significant morbidity and mortality and face higher complication rates from advanced therapies. Ensuring these therapies match patients’ values is essential for patient-centered care, and palliative care can be instrumental in clarifying patients’ goals.

To examine the relationship between advanced heart failure patients’ expressed goals of care and their subsequent clinical outcomes and circumstances of death.

In this retrospective cohort study, electronic medical records were reviewed for demographic information, advanced therapy evaluation outcomes, and quality-of-death metrics. Goals of care were identified from palliative consult notes and compared with outcomes to assess goal-concordance.

This single-center study included adults who were referred to both advanced heart failure and palliative care specialists from 2012 to 2022.

Of 212 patients, 91 (42.9%) underwent evaluation for advanced therapies, though few received a heart transplant (16, 7.5%) or left ventricular assist device (32, 15.1%). Most (148, 69.8%) had only one palliative physician visit. One hundred thirty-nine (65.6%) died, often in the hospital (55, 40%) and with life-sustaining therapy in the last 24 h (73, 52.5%). Most (167, 78.8%) received goal-concordant care, with the main reasons for discordance being the desire for advanced therapy (33, 15.6%) and complications post-implantation affecting quality of life (9, 4.2%).

Few older adults received advanced therapies, and palliative care was underutilized, with many patients seeing palliative care only once. Most received goal-concordant care, but decisions were often made late, highlighting the need for earlier, longitudinal palliative care for these vulnerable patients.

Malignant bowel obstruction is a life-threatening condition associated with advanced cancer that causes severe pain, nausea and vomiting. Decision-making requires input from multiple specialities, outcomes are uncertain and clinical communication is challenging. Better understanding of the mechanics of shared decision-making would improve the management of this condition.

To investigate behavioural and structural influences on decisional deliberation during the management of malignant bowel obstruction and develop strategies for improved communication.

A realist review following RAMESES guidelines; protocol registered in PROSPERO (CRD42022308251).

Iterative literature searches were conducted from December 2021 to January 2023, with an update search conducted in January 2024. All relevant data sources relating to shared decision-making in the management of malignant bowel obstruction were included.

Seventy-one papers were included. Realist synthesis led to the development of context-mechanism-outcome configurations in four conceptual areas to explain influences on practitioner, patient and caregiver engagement in shared decision-making: (1) implicit misunderstandings, (2) the nature of the decision, (3) interpersonal dynamics and (4) a fragmented ethos of care. Implicit social mechanisms can affect the transparency of shared decision-making and the value individual decision-makers assign to the process, and motivation to participate is likely to vary as circumstances change.

Communication around patients with advanced cancer and malignant bowel obstruction is characterised by ambiguity, unrealistic expectations and a lack of interdisciplinary coordination. Crucial features of effective decisional deliberations include alignment of goals of care, unambiguous explanation of treatment limitations and iterative communication to facilitate the formation of realistic expectations.

Integrated palliative care may improve outcomes in patients with cancer, but few studies have specifically evaluated its benefits in head and neck cancer.

To assess changes in symptom control, quality of life, and supportive care needs in patients with head and neck cancer consecutively treated at a palliative care outpatient clinic over 12 months.

Prospective cohort study. Symptoms were assessed at baseline and at 1.5, 3, 6, 9, and 12 months, and quality of life at baseline, 2, and 4 months. Symptom management was adjusted and referrals made as needed.

Palliative care outpatient clinic integrated into the head and neck cancer unit of a comprehensive cancer center. Patients with head and neck cancer referred to this clinic who attended their first consultation were eligible.

118 patients (69.5% males; mean [SD] age 62.9 [10.5] years) were included. Most (91%) had active disease (85% receiving anti-cancer treatment). From baseline to month 12, improvements were observed in: average pain intensity (mean [95% CI]), 2.53 [2.09; 2.96] to 1.5 [0.86; 2.14]; total symptom distress score, 27.96 [25.35; 30.57] to 20.34 [16.63; 24.05]; anxiety, 1.86 [1.48; 2.24] to 1.14 [0.57; 1.7]; depression, 3.46 [3; 3.93] to 2.79 [2.13; 3.45]. Quality of life improved from baseline to month 4. Referral rates to supportive care were: social work (50%), psycho-oncology (21%), psychiatry (12%).

Patients managed at a dedicated palliative care outpatient clinic showed improvements in symptom control and quality of life over time, which may reflect the contribution of integrated palliative care in the ambulatory setting.

Access to palliative care remains uneven for people described, often variably and controversially, as culturally and linguistically diverse. Terminology and definitions differ across jurisdictions, shaping how models are designed, implemented, and reported. Evidence on model design and impact for people of culturally and linguistically diverse backgrounds is limited and heterogeneous.

To map what is known about palliative care models for adults of culturally and linguistically diverse backgrounds in high-income nations, describing model components, reported outcomes, implementation influences, and gaps.

A scoping review was conducted, guided by the JBI manual and the PRISMA-ScR checklist.

In May 2024, MEDLINE, CINAHL, and Scopus were searched. Eligible publications described a palliative care model for adults of culturally and linguistically diverse backgrounds in high-income nations and reported evidence of utility. Letters, commentaries, editorials, protocols, reviews, and anonymously-authored publications were excluded. No limits on date, design, numbers, outcomes, or language were applied.

Five publications met the inclusion criteria. Four shared components were identified – culturally sensitive care, family and community engagement, interdisciplinary and community-based approaches, as well as education and empowerment – with reported benefits for patients and family members. However, the evidence-base was geographically narrow, with no explicit engagement with an intersectional analytic lens.

This review indicates areas of apparent consensus about core components, while underscoring conceptual and evidentiary limitations. Future research should employ theoretically-informed, structurally-oriented, and co-produced approaches that clarify definitions and examine how models address intersecting disadvantages and organisational constraints to achieve equitable, scalable palliative care.

High-quality palliative care is an international human right. Despite reduced life expectancy, people with severe mental illness face major disparities in access and quality.

This study explored requirements for good palliative care for people with severe mental illness as perceived by stakeholders.

This Group Concept Mapping study used a mixed-methods participatory design with two phases: (1) an online brainstorming period (25 days), in which participants could respond several times to the focus prompt about good palliative care for patients with severe mental illness, and (2) individual sorting and rating of statements, followed by data analysis using multidimensional scaling and hierarchical cluster analysis.

This study included 163 broadly defined stakeholders involved in severe mental illness care in the Netherlands, predominantly healthcare professionals, including client representatives and relatives.

Based on 98 unique statements derived from 515 responses, a concept map of seven clusters emerged: “Selfcare for healthcare professionals,” “Expertise,” “Communication in advance care planning (highest rated cluster),” “Care chain,” “Organization and policy making,” “Advance care planning” and “Patient centred care.” Statement 66, “Centralize the patient,” was considered most important.

Good palliative care for people with severe mental illness is challenged by complexity, stigma and varied stakeholder demands. As basic requirements are often unmet in mental health care, individuals with severe mental illness are at increased risk of being deprived of their rights to receive quality palliative care. This study underscores the need to extend care recommendations and improve professional training, focusing on self-care and interdisciplinary education.

Reflexivity is essential in end-of-life research due to its ethical sensitivity, emotional intensity, and relational complexity, yet it is often left to individual initiative and remains weakly institutionalized in palliative care research settings.

To describe the design, implementation, and initial outputs of a Reflexivity Lab developed as a structured, collective reflexive method embedded within a palliative care research service.

A Reflexivity Lab was implemented in 2023 within the palliative and supportive care service of the Lausanne University Hospital, in Switzerland. The Lab convenes monthly and brings together clinical and non-clinical researchers engaged in end-of-life fieldwork to reflect collectively on methodological, ethical, and emotional challenges encountered during research.

The Lab supported the identification of recurrent reflexive issues and the development of focused collective reflexivity leading to scholarly outputs. An illustrative example on practices of “saying goodbye” to participants at imminent end of life demonstrates how emotionally charged research moments can be transformed into explicit objects of methodological inquiry.

Embedding a Reflexivity Lab within palliative care research infrastructures offers a practical, transferable approach to institutionalizing reflexivity as an ongoing methodological practice.

Implementing tools to identify and support palliative care needs remains challenging in hospitals, requiring a clear understanding of implementation determinants. This study defines tools as clinical resources for palliative care identification, needs assessment, and advance care planning support.

This scoping review aimed to identify and categorise the barriers and facilitators influencing the implementation of tools in hospital settings.

Following the Arksey and O’Malley framework with PRISMA-ScR reporting, we employed a hybrid analysis combining inductive thematic coding with deductive mapping onto the Consolidated Framework for Implementation Research. Studies in English, Danish, Norwegian, or Swedish were considered eligible for inclusion.

In May 2024, the databases MEDLINE, Embase, Scopus, CINAHL, SocINDEX, and PsycINFO were searched for studies focusing on tool implementation by healthcare professionals in hospital settings.

From 4032 records screened, 25 studies were included. Determinants were identified across all five Consolidated Framework for Implementation Research domains, though primarily concentrated within the Inner Setting and Individuals. Key barriers included time constraints, lack of training, and fragmented communication. Facilitators comprised strong leadership support, clinical champions, multidisciplinary collaboration, and a supportive organisational culture.

This scoping review identifies determinants that can inform the selection of implementation strategies for tools in hospitals. Our findings suggest that tool implementation likely requires multi-faceted strategies capable of addressing barriers across multiple levels, from individual training to organisational leadership and culture. Future research should focus on evaluating tailored strategies that account for the unique complexities of different hospital contexts to ensure sustainable adoption.

Psychological and existential suffering affects many people with advanced illness, and current therapeutic options have limited effectiveness. Repetitive transcranial magnetic stimulation (rTMS) is a safe and effective therapy for refractory depression, but no previous study has used rTMS to treat psychological or existential distress in the palliative setting.

To determine whether a 5-day course of “accelerated” rTMS is feasible and can improve psychological and/or existential distress in a palliative care setting.

Open-label, single arm, feasibility, and preliminary efficacy study of intermittent theta-burst stimulation to the left dorsolateral prefrontal cortex, 600 pulses/session, 8 sessions/day (once per hour) for 5 days. The outcomes were the rates of recruitment, completion of intervention, and follow-up (Feasibility); and the proportion of participants achieving 50% improvement on the Hamilton Depression Rating Scale (HDRS) or Hospital Anxiety and Depression Scale (HADS) 2 weeks post-treatment (Preliminary Efficacy).

Adults admitted to our academic Palliative Care Unit with advanced illness, life expectancy >1 month and psychological distress.

Due to COVID-19 pandemic-related interruptions, a total of nine participants were enrolled between August 2021 and April 2023. Two withdrew before starting rTMS, one stopped due to clinical deterioration unrelated to rTMS, and six completed the rTMS treatment. Five of six participants had a >50% improvement in HDRS, HADS-Anxiety, or both between baseline and the 2 week follow up; the sixth died prior to the 2-week follow-up. In this small sample, mean depression scores decreased from baseline to 2 weeks post-treatment (HDRS 18 vs 7, p = 0.03). Side effects of rTMS included transient mild scalp discomfort.

Accelerated rTMS improved symptoms of depression, anxiety, or both in this small feasibility and preliminary efficacy study. A larger, sham-controlled study is warranted to determine whether rTMS could be an effective, acceptable, and scalable treatment in the palliative setting.

NCT04257227

Given the increasing demand for palliative and end-of-life care, along with the introduction of costly new treatments, there is a pressing need for robust evidence on value. However, comprehensive guidance is missing on methods for conducting economic evaluations in this field.

To identify and summarise existing information on methodological challenges and potential solutions/recommendations for economic evaluations of palliative and end-of-life care.

We conducted a systematic review of publications on methodological considerations for economic evaluations of adult palliative and end-of-life care as per our PROSPERO protocol CRD42020148160. Following initial searches, we conducted a two-stage screening process and quality appraisal. Information was thematically synthesised, coded, categorised into common themes and aligned with the items specified in the Consolidated Health Economic Evaluation Reporting Standards statement.

The databases Medline, Embase, HTADatabase, NHSEED and grey literature were searched between 1 January 1999 and 5 June 2023.

Out of the initial 6502 studies, 81 were deemed eligible. Identified challenges could be grouped into nine themes: ambiguous and inaccurate patient identification, restricted generalisability due to poor geographic transferability of evidence, narrow costing perspective applied, difficulties defining comparators, consequences of applied time horizon, ambiguity in the selection of outcomes, challenged outcome measurement, non-standardised measurement and valuation of costs as well as challenges regarding a reliable preference-based outcome valuation.

Our review offers a comprehensive context-specific overview of methodological considerations for economic evaluations of palliative and end-of-life care. It also identifies the main knowledge gaps to help prioritise future methodological research specifically for this field.

The demands of caring for a child with a life-limiting condition can have a profound impact on parents’ health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents.

To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition.

Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition.

A total of 30 mothers and 12 fathers were recruited via four UK children’s hospices and social media.

Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child’s educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain.

The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).

People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations.

To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care.

A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616).

MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal.

Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care.

Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder.