Specialist Palliative Care Services Research Articles

Psychosocial palliative care: Patients' preferred intervention medium, target domains, and well-being priorities.

Although psychological distress in palliative patients has at least an equal or greater impact on the quality of life compared to physical or spiritual distress, there is limited research on contextual factors associated with psychosocial intervention accessibility and relevance. This is the first published study to explore patients' views on psychosocial intervention delivery medium preferences, key biopsychosocial target domains, and well-being priorities during the palliative and end-of-life (EOL) phases. Eighty-one palliative patients from a Specialist Palliative Care Service completed a questionnaire, which collected quantitative and qualitative data on preferred mediums for receiving psychosocial interventions, priority biopsychosocial target domains, and well-being priorities during the palliative and EOL phases. Results showed that an individual in-person was the most preferred medium for receiving psychosocial interventions. Improving quality of life, distressing emotions, and adjusting to the palliative care context were the 3 most frequently endorsed biopsychosocial target domains. Valued living and comfortable living were the key priority well-being themes for the palliative phase, whereas being surrounded by loved ones and comfortable and dignified dying were the priority well-being themes for the EOL phase. Findings highlight psychosocial interventions as an essential part of a holistic approach to patient-centered care throughout both the palliative and the EOL phases. Results can inform the refinement of existing and the development of new psychosocial interventions, particularly those that target emotional distress, adjustment, and quality of life. Furthermore, in-person treatment delivery remains essential in an evolving digital world.

Health Care Utilization in the Last Year of Life in Parkinson Disease and Other Neurodegenerative Movement Disorders.

Neurodegenerative movement disorders are rising in prevalence and are associated with high health care utilization. Generally, health care resources are disproportionately expended in the last year of life. Health care utilization by those with neurodegenerative movement disorders in the last year of life is not well-understood. The goal of this study was to assess the utilization of acute care in the last year of life among individuals with neurodegenerative movement disorders and determine whether outpatient neurology or palliative care affected acute care utilization and place of death. We conducted a retrospective cross-sectional study including health system administrative data in Alberta, Canada, from 2011 to 2017. Administrative data were used to determine place of death and quantify emergency department (ED) visits, hospitalizations, intensive care unit admissions, and outpatient generalist and specialist visits. Diagnoses were classified by 10th revision of the International Classification of Diseases codes. Stata 16v was used for statistical analyses. Among 1439 individuals (60% male), Parkinson disease (n = 1226), progressive supranuclear palsy (n = 78), multiple system atrophy (n = 47), and Huntington disease (n = 58) were the most common diagnoses. The most frequent place of death was in hospital (45.9%), followed by long-term care (36.3%), home (7.9%), and residential hospice (4.0%). Most (64.2%) had >1 ED visit, and 14.4% had >3 emergency department visits. Fifty-five percent had >1 hospitalization, and 23.3% spent >30 days in hospital. Few (2.6%) were admitted to ICU. Only 37.2% and 8.8% accessed outpatient neurologist and specialist palliative care services, respectively. Multivariate logistic regression found the odds of dying at home was higher for those who received outpatient palliative consultation (OR, 2.49, 95% confidence interval [CI], 1.48-4.21, p < 0.001) and were with a longer duration of home care support (OR, 1.0007, 95% CI, 1.0004-1.0009, p < 0.001). There are high rates of in-hospital death and acute care utilization in the year before death among those with neurodegenerative movement disorders. Most did not access specialist palliative or neurologic care in the last year of life. Outpatient palliative care and home care services were associated with increased odds of dying at home. Our results indicate the need for further research into the causes, costs, and potential modifiers to inform public health planning.

A Retrospective, Single-Center Analysis of Specialized Palliative Care Services for Patients with Advanced Small-Cell Lung Cancer.

Simple SummaryPatients with advanced small-cell lung cancer (SCLC) have a considerable symptom burden and may require extensive care. A crucial element of treatment for these patients is the integration of specialized palliative care (SPC). Timely integration of SPC for patients with advanced non-small cell lung cancer (NSCLC) improved quality of life and prolonged survival in large prospective trials. This study provides retrospective data for patients with SCLC with, and without SPC. The results and conclusions indicate that patients with advanced SCLC should participate in a consultation with a SPC team in a timely manner to ensure a benefit of SPC for this patient group.Timely integration of specialized palliative care (SPC) has been shown to improve cancer patients’ quality of life (QoL) and reduced the use of medical services. To evaluate the level of integration of SPC services for patients with advanced small-cell lung cancer (SCLC), we retrospectively analyzed medical records of patients from 2019 to 2021. Regarding the timing of referral to SPC services, we defined four cutoffs for early referral according to the current literature: (a) SPC provided ≤ 60 days after diagnosis; (b) SPC provided ≥ 60 days before death; (c) SPC provided ≥ 30 days before death; and (d) SPC provided ≥ 130 days before death. One hundred and forty-three patients (94.1%) were found to have locally advanced (stage III) or metastatic (stage IV) disease. Sixty-eight were not referred to SPC services (47.6%), whereas 75 patients received SPC (52.4%). We found a significantly higher number of referrals to SPC services for patients with higher ECOG (Eastern Cooperative Oncology Group) (i.e., ECOG ≥ 2) (p = 0.010) and patients with stage IV disease (p ≤ 0.001). The median overall survival (OS) for SCLC stage III/IV patients (n = 143) who did not receive SPC treatment was 17 months (95% CI 8.5–25.5), while those who did receive SPC treatment had a median OS of 8 months (95% CI 6.2–9.8) (p = 0.014). However, when we evaluated patients receiving SPC treatment in a timely manner before death as suggested by the different cutoffs indicated in the literature, they lived significantly longer when referred at a minimum of ≥60 or ≥130 days before death. Based on our findings, we suggest that patients with advanced SCLC should participate in a consultation with a SPC team in a timely manner to ensure a benefit of SPC for this patient group.

Symptom management in people dying with COVID-19: multinational observational study

ObjectivesTo describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines.MethodsWe surveyed specialist palliative care services, contacted via...

1277P The role of palliative care in patients with glioblastoma multiforme: A single centre review

Patients with Glioblastoma Multiforme (GBM) have a prognosis of 16-21 months and high care needs due to progressive neurological deficits, cognitive impairment, and behavioural change. They often do not express the usual symptoms generally associated with advanced incurable cancer. They therefore represent a challenge to the classic palliative care assessment of needs. We aim to review patients with GBM who were referred to a hospital specialist palliative care (HSPC) service in a quaternary centre to inform service development.

End-of-life care of patients with esophageal or gastric cancer: decision making and the goal of care

Background Overall survival (OS) with advanced esophageal or gastric cancer is poor. To avoid overly aggressive treatments at the end-of-life and assure adequate end-of-life quality, the decision to focus on symptom-centered palliative care (PC) and terminate anticancer treatments, i.e., the PC decision, should be made in time. Material and methods We reviewed the charts of patients (N = 160) with esophageal or gastric cancer treated at the Department of Oncology at Helsinki University Central Hospital in 2013 and deceased by December 2014. The use of acute services (Emergency department (ED) visits and hospitalizations) and places of death were compared according to the timing of the PC decision. Reasons for ED visits and hospitalizations were collected. Results The median OS from diagnosis of advanced cancer was 6 months. Anti-cancer treatments were never started for 34% of the patients. The PC decision was made early (>30 days before death) for 54% of the patients and late (≤30 days before death) or not at all for 46%. Patients with late or no PC decision died more often in tertiary/secondary hospital (29 versus 7%, p = 0.001) and had more ED visits (49 versus 29%, p < 0.001) and hospitalizations (53 versus 28%, p = 0.001) in their last month, and visited the PC unit less often (18 versus 69%, p < 0.001), than the patients with early PC decision. The ED visits were most commonly related to cancer progression, and clinical deterioration (17%), fever (16%), and dysphagia (15%) were the most common symptoms. Conclusion The decision to focus on PC and terminate anticancer treatments, i.e., the PC decision, was made late or not at all in every other patient, leading to increased tertiary/secondary hospital service use and deaths at tertiary/secondary hospital. Early decision-making increased end-of-life care at specialized PC services or at home, implying better end-of-life care.

Preferences of Older People With a Life-Limiting Illness: A Discrete Choice Experiment.

There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences. A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences. Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate=66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001). People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate.

Palliative and end of life care in undergraduate medical education: a survey of New Zealand medical schools

BackgroundIn New Zealand, 34% of deaths occur in the hospital setting where junior doctors are at the frontline of patient care. The death rate in New Zealand is expected to double by 2068 due to the aging population, but many studies report that graduates feel unprepared to care for people near the end of life and find this to be one of the most stressful parts of their work. International guidelines recommend that palliative and end of life care should be a mandatory component of undergraduate medical education, yet teaching varies widely and remains optional in many countries. Little is known about how medical students in New Zealand learn about this important area of clinical practice. The purpose of this study was to investigate the organisation, structure and provision of formal teaching, assessment and clinical learning opportunities in palliative and end of life care for undergraduate medical students in New Zealand.MethodsQuantitative descriptive, cross-sectional survey of module conveners in New Zealand medical schools.ResultsPalliative and end of life care is included in undergraduate teaching in all medical schools. However, there are gaps in content, minimal formal assessment and limited contact with specialist palliative care services. Lack of teaching staff and pressure on curriculum time are the main barriers to further curriculum development.ConclusionsThis article reports the findings of the first national survey of formal teaching, assessment and clinical learning opportunities in palliative and end of life care in undergraduate medical education in New Zealand. There has been significant progress towards integrating this content into the curriculum, although further development is needed to address barriers and maximise learning opportunities to ensure graduates are as well prepared as possible.

SY15-4 Asessment of appropriate referral timing to Specialized Palliative Care service based on the survey of bereaved families of cancer patients

There is growing evidence supporting a need to integrate palliative care and oncological care, especially early access to Specialized Palliative Care service (SPC) for patients with advanced cancer. Clinicians need to know appropriate timing for SPC referral based on patient and familiy reported outcomes derived from their experiences through cancer diagnosis, anticancer treatment, and end of life care; however, few studies have investigated the appropriate SPC referral timing based on cancer patients and their families reported outcome.

Beyond 9 to 5: Expansion of an Inpatient Specialist Palliative Care Service to 24/7 Onsite Presence.

For seriously ill hospitalized patients with a diagnosis of cancer, there exists a need for specialist palliative care, 24 hours a day, 7 days a week. This article describes the expansion of a palliative care consult service in a metropolitan, dedicated cancer hospital to provide 24/7 specialist palliative care including onsite overnight presence by advanced practice registered nurses and to evaluate the impact of this change on nighttime utilization of the consult service. Inpatient management encounters and outpatient calls were compared before and after the expansion. The onsite availability of a palliative care specialist between midnight and 8 am increased from less than 10% of the time in 2019 to 100% of the time in 2021. The number of inpatient overnight calls and pages increased from a median of 4 to 16, and the number of follow-up visits evaluated increased from a median of 0 to 6. However, the number of overnight palliative care consults and outpatient calls evaluated did not change significantly. Expansion of a hospital-based palliative care service to include 24/7 onsite overnight presence increased patient, family, and night staff access to high-quality palliative care, prompt symptom management, and staff coaching on primary palliative care skills.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol

IntroductionMore people are living with multimorbidity, defined as two or more long-term physical or mental health conditions. Multimorbidity is associated with poor quality of life and high treatment burden. Palliative...

The impact of covid-19 on out-of-hours adult hospice care: an online survey

BackgroundGlobally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services.MethodsA national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis.ResultsEighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff.ConclusionsSurvey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

Consultations’ demand for a hospital palliative care unit: how to increase appropriateness? Implementing and evaluating a multicomponent educational intervention aimed at increase palliative care complexity perception skill

BackgroundPlanned, multidisciplinary teams’ discussions of cases are common in cancer care, but their impact on patients’ outcome is not always clear. Palliative care (PC) needs might emerge long before the last weeks of life. Many palliative care patients could be managed from the usual care staff, if appropriately trained; specialist palliative care should be provided to patients with more complex needs. Staff needs adequate training, so that only patients presenting a higher complexity are properly referred to the second level (“specialized”) PC services. In the considered hospital setting, “tumour boards” (multidisciplinary discussions) refer often to a low number of patients. Overall complexity of patients’ needs is hardly considered.MethodsA mixed method pilot study with data triangulation of professionals’ interviews and an independently structured evaluation of complexity of referred patients, before and after the intervention, using the PALCOM instrument. We trained four teams of professionals to deliver first-level palliation and to refer patients with complex needs detected in multidisciplinary discussions. A multicomponent, first level PC educational intervention, including information technology’s adaptation, a training course, and bedside training was offered from the specialized PC Services, to all the HPs involved in multidisciplinary pancreas, lung, ovarian, and liver tumour boards.ResultsWhile the level of complexity of referred patients did not increase, trainees seemed to develop a better understanding of palliative care and a higher sensitivity to palliative needs. The number of referred patients increased, but patients’ complexity did not. Qualitative data showed that professionals seemed to be more aware of the complexity of PC needs. A “meaning shift” was perceived, specifically on the referral process (e.g., “when” and “for what” referring to specialist PC) and on the teams’ increased focus on patients’ needs. The training, positively received, was adapted to trainees’ needs and observations that led also to organizational modifications.ConclusionsOur multicomponent intervention positively impacted the number of referrals but not the patients’ complexity (measured with the PALCOM instrument). Hospital staff does not easily recognize that patients may have PC needs significantly earlier than at the end of life.

Patients with Congestive Cardiac Failure Referred to Specialist Palliative Care.

Congestive cardiac failure is a chronic, progressive condition with a significant symptom burden. There is limited data available regarding the palliative care requirements of the heart failure population. To characterise patients with a primary diagnosis of congestive cardiac failure referred to a specialist palliative care (SPC) service in Ireland. A retrospective chart review of patients with congestive cardiac failure admitted to the specialist palliative care unit or reviewed by the community palliative care team over 2 years was carried out, utilising a data collection template. 57 patient charts were included. 54% (n = 31) were female. Mean age was 81 [60 - 97] years. GP's referred 42% (n = 24), Cardiologists 39% (n = 22) and other hospital consultants 19% (n = 11). The commonest symptom reported was dyspnoea (n = 47). Time from referral to death ranged from less than one month (n =22) to greater than one year (n = 3). 14 patients were discharged from the service due to lack of SPC needs. Place of death was distributed between home, hospice, nursing home and acute hospital. Patients with congestive cardiac failure experience high symptom burden. More than 50% of patients that died while receiving SPC input had been referred less than 1 month prior, while almost a quarter of all referrals resulted in patient discharge. This highlights the importance of further education regarding indication for specialist palliative care referral and the benefits of early referral in this patient cohort when appropriate.

Possible age-related differences in healthcare professionals’ perspectives on younger and older patients’ autonomy and decision-making in the context of sedation in specialised palliative care: exploratory secondary qualitative content and linguistic conversation analysis of interviews with healthcare professionals

BackgroundChronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients’ autonomy, in the context of sedation in specialised palliative care.MethodSecondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany.ResultsThe study shows that the perspectives of healthcare professionals on patients’ autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients.ConclusionIn particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients’ ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient’s age or age-related stereotypes.Trial registrationThe study “SedPall” is registered in the German Clinical Trials Register (ID: DRKS00015047).

Using Datix Electronic Incident Reporting System to Develop a Palliative and End-of-Life Care Patient-Centered Auditing, Quality Assessment and Reporting System

The need for specialist palliative care services has never been higher as the ongoing coronavirus disease (COVID) pandemic has highlighted. Yet even in the absence of the pandemic, specialist palliative care services in hospitals, hospices and within communities were already stretched beyond their capacity. The current fiscal climate within which most healthcare systems operate are undergoing global economic constraints making it a necessity that healthcare systems explore new ways of working to develop efficient high-quality services, maximising resources whilst maintaining good clinical governance. We describe how a hospital palliative and end-of-life care (PEoLC) specialist team, can harness an existing electronic incident reporting system Datix, adapting it to automatically track the longitudinal performance of the patient-centred, end-of-life care (EoLC) services that they deliver, along national standards in keeping with the Care Quality Commission (CQC) and the National Institute for Health and Excellence (NICE) guidelines for end-of-life care in the UK. Such automated systems can inform the quality of PEoLC services, improve the use of time and resource within specialist palliative care teams, support the delivery of evidence-based clinical governance standards, whilst supporting benchmarking across organisations, strategy development, insight into local/regional variations, and the establishment of standardisations of care.

Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists.

AimTo explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families.DesignA qualitative descriptive approach using focus group and interview methods.MethodsFocus groups and semi‐structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan‐Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper.ResultsFour main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer's willingness to engage with palliative care services; and the impact of COVID‐19 on palliative care for mesothelioma patients.ConclusionThis study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS's play a crucial role in supporting patients' and families palliative care needs, and are highly skilled in providing this care.ImpactBy acknowledging the role of Mesothelioma UK CNS's in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families.

Potentially inappropriate prescribing in older adults with cancer receiving specialist palliative care: a retrospective analysis of medical records

Abstract Introduction Older adults (≥65 years) with cancer often have existing comorbidities requiring multiple medications (1). Optimising medications in palliative care requires clinicians to consider whether each medication is appropriate in relation to patients’ context, treatment goals and life expectancy. The reported prevalence of potentially inappropriate prescribing (PIP) in general palliative care settings ranges from 15 to 92% (2). However, the application of tools that are specific to populations with limited life expectancy has been lacking in previous research (2). Aim To describe and assess the appropriateness of prescribing practices for older adults with cancer in the last seven days of life in an inpatient palliative care setting. Methods This was a retrospective observational study of medical records for older adults (≥65 years) with cancer who received inpatient specialist palliative care services in a hospice setting in Ireland in the final week of life over a two-year period. Data were extracted relating to patient demographics and prescribed medications using an electronic pro-forma. Medication appropriateness was assessed using the following tools: STOPPFrail (Version 2; consists of 25 deprescribing criteria for use in frail older adults with limited life expectancy), the OncPal deprescribing guideline (consists of eight medication classes for deprescribing in palliative patients with cancer) and criteria for identifying Potentially Inappropriate Prescribing in older adults with Cancer receiving Palliative Care (PIP-CPC; consists of 24 criteria for identifying potentially inappropriate prescribing of medications for symptomatic relief in older adults with cancer). These tools were retrospectively applied to the extracted data by the lead researcher. Data were analysed (Stata, Version 15) using descriptive statistics, including means (standard deviation, SD), medians (inter-quartile range, IQR) and frequency and percentage. Results One hundred and eighty older adults with cancer were included in this study. The majority were male (60.6%) and the median age was 74 years (range 65-94 years). The most common primary cancer diagnoses affected the digestive organs (31.7%), respiratory and intrathoracic organs (18.8%) and male genital organs (10%). Almost all patients (94.5%) had at least one comorbid condition (median 3, IQR 2-5). The median number of medications increased from five (IQR 3-7) seven days before death, to 11 medications on the day of death (IQR 9-15). The most prevalent drug classes were opioids, antipsychotics, antispasmodics, benzodiazepines and paracetamol. More than half of patients had at least one PIP identified by the tools (n=97, 53.9%). The identified prevalence of PIP per tool in the patient cohort was: STOPPFrail V2 (20.6%), OncPal (12.7%), PIP-CPC (32.8%). However, several criteria could not be applied due to the absence of clinical information. Conclusion This study highlights that the number of medications prescribed to older adults with cancer increased as time to death approached, and that more than half of patients received at least one medication which was considered potentially inappropriate during their last week of life. The absence of electronic prescribing records and retrospective nature of the study limited the applicability of some criteria. Interventions are needed to optimise medication prescribing and use in palliative care settings. References (1) Sharma M, Loh KP, Nightingale G, Mohile SG, Holmes HM. Polypharmacy and potentially inappropriate medication use in geriatric oncology. J Geriatr Oncol. 2016;7(5):346-53. (2) Cadogan CA, Murphy M, Boland M, Bennett K, McLean S, Hughes C. Prescribing practices, patterns, and potential harms in patients receiving palliative care: A systematic scoping review. Expl Res Clinic Soc Pharm. 2021;1(3):100050.

Engagement of specialized palliative care services with the general public: A population-level survey in three European countries

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services’ dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.

Specialist palliative care classification: typology development

ObjectivesThe heterogeneity of specialist palliative care services requires a classification to enable a clear description and comparison. In Germany, specialist palliative care is provided by palliative care units, palliative care...