Specialist Palliative Care Team Research Articles

Influences of Specialist Palliative Care Team Input, Advance Care Planning, Non-Invasive Ventilation and Gastrostomy Status on Unscheduled Hospital Admissions and Place of Death for People with Motor Neuron Disease: A Retrospective Cohort Analysis.

Motor neuron disease is a rapidly progressing neurological condition. People with life-limiting conditions generally prefer to die at home and avoid hospital admissions, with Specialist Palliative Care Team involvement often pivotal. Our aim was to investigate the role of advance care planning, Specialist Palliative Care Team input and other relevant variables on place of death and unscheduled hospital admissions in a Scottish population of people with motor neuron disease. Methods: National CARE-MND audit data, primary and secondary care data, and local Palliative Care records were interrogated. Chi-square, point-biserial correlation and binary logistic regression analysed associations (p < 0.05 statistically significant). Participants (188) were deceased, having a verified motor neuron disease diagnosis between 2015-2017, diagnosis occurring ≥28 days before death. Results: Advance care planning and Specialist Palliative Care Team input of ≥28 days were associated with increased odds of dying outside hospital (BLR:OR 3.937, CI 1.558-9.948, p = 0.004 and OR 2.657, CI 1.135-6.222, p = 0.024 respectively). Non-invasive ventilation decreased the odds of dying outside hospital (BLR:OR 0.311, CI 0.124-0.781, p = 0.013). Having a gastrostomy increased odds of ≥1 admissions in the last year of life (BLR:OR 5.142, CI 1.715-15.417, p = 0.003). Statistical significance was retained with removal of gastrostomy-related complications. Conclusion: Early Specialist Palliative Care input and advance care planning may increase the likelihood of death outside of hospital for persons with motor neuron disease. Further research is warranted into barriers of facilitating death outside of hospital with home non-invasive ventilation use and the association between gastrostomy status and unscheduled admissions.

Oral Symptom Assessment In Older Patients with Frailty Using the Oral Symptom Assessment Scale

Abstract Background Frailty is common in older patients referred to specialist palliative care teams. Its prevalence is estimated at 18% [1]. It is regarded as a “state of vulnerability” [2] in which even a minor stressor may result in adverse health outcomes [3] and mortality [4] independently of chronological age [5]. Oral problems in older patients may also be associated with increased morbidity and mortality [6, 7]. There may be an indirect interplay between oral problems and frailty. Oral symptoms like xerostomia are common in older patients. There is a paucity of research examining oral symptoms specifically in older patients with frailty. Thus, the prevalence of many oral symptoms is not known in this patient group. Methods The aims of this study were to determine the prevalence of oral symptoms in older patients with frailty and to determine their clinical features using the Oral Symptom Assessment Scale (with the addition of the symptom of drooling). This prospective observational study was conducted at Our Lady’s Hospice and Care Services, Dublin, and St James’ Hospital, Dublin. Once informed consent was obtained, participants completed the OSAS. Clinical Frailty Scale score, medications, co-morbidities and basic demographics were also recorded. Results Data from the first 100 participants recruited to the study is presented. Ninety-one participants reported at least one oral symptom. Two symptoms was the most frequent number of oral symptoms experienced (19%, 19/100). The median number of symptoms present was 4 (range: 0–13 symptoms). Forty participants reported the “new” symptom of “drooling”. Conclusion Asking about oral symptoms is important in this patient group. Initial data analysis suggests that many oral symptoms are common (and often of high impact). This study provides a novel insight into the prevalence and clinical features of oral symptoms not previously investigated using a multi-dimensional symptom-specific assessment too.

Advance Care Planning Practices For Nursing Home Residents Referred To Specialist Palliative Care In An Acute Hospital Setting

Abstract Background Advance care planning (ACP) is a structured process of discussion between patients, their loved ones and health care professionals, which aims to establish and record an individual’s goals and preferences for future medical treatment and care. It is of significant relevance to nursing home residents, a comorbid and frail population at high risk of clinical deterioration. Methods This prospective, observational study included all nursing home residents referred to an inpatient specialist palliative care (SPC) service in a model four hospital over a six-month period (November 2023 to May 2024). Basic clinical and demographic information as well as data on functional status and advance care planning was anonymised and collated using Microsoft excel. Results 36 patients (mean age 79 years) were recruited. 36% (n=13) were referred within 48 hours of admission. The average Australia-modified Karnofsky Performance Scale score was 40 on admission. 94% (n=34) had a clinical frailty score of ≥7 on admission. 72% (n=26) had an advance care plan in the nursing home. However, 22% (n=8) had not recorded their wishes pertaining to hospital readmission and 3 patients were admitted despite documenting a preference to remain in the nursing home. 53% (n=19) had not documented their preferred place for end-of-life care. 69% (n=25) died in hospital. Conclusion Most nursing home residents referred to the inpatient SPC team had severe frailty and died in hospital, reflecting the prognostic implications of severe frailty. Crucial components of the advance care plan were omitted in a significant proportion of patients, which may have influenced their referral to hospital. Provision of increased support to staff caring for older, frail adults in the residential care setting should be considered to enhance ACP.

Timing and content of serious illness conversations for patients with advanced heart failure in a specialty-aligned palliative care service

BackgroundPatients with advanced heart failure (AHF) desire communication around values and goals prior to treatment decisions. ObjectivesTo evaluate the timing and content of the first serious illness communication (SI conversation) for patients with AHF after referral to a specialist palliative care (PC) team (HeartPal). MethodsIn this retrospective cohort study, we used electronic health records to identify patients referred to HeartPal and their first SI conversations at a tertiary care hospital between October 2018 and September 2021. We used natural language processing and predetermined codes to quantify prevalence of prior goals of care conversations by the cardiology team within six months preceding the HeartPal consultation and the prevalence of hopes, fears, and seven conversation content codes. Consecutive SI conversations and patient outcomes were followed until March 2022. ResultsOf 468 patients (mean age: 64 years, 72 % male, 66 % referred for goals of care conversation), 25.2 % had prior documented goals of care conversations preceding the HeartPal consultation. During the study period, 206 (44.0 %) patients died (median time from initial SI conversation to death: 65 days, IQR 206) and 43.2 % engaged in multiple SI conversations before death. SI conversation analysis (n = 324) revealed that patients hoped to “be at home” (74.1 %, n = 240), “be independent” (65.7 %, n = 213) and “live as long as possible” (53.4 %, n = 173). Conversation content included goals of care (83.0 %), strengths (83.0 %), decision-making (79.3 %), spirituality (71.0 %), coping (52.2 %), and prognostic communication (43.5 %). ConclusionSpecialist PC service provides documentation of goals and values and offers longitudinal follow-up for patients with AHF.

Experiences of patients with advanced chronic diseases and their associates with a structured palliative care nurse visit followed by an interprofessional case conference in primary care – a deductive-inductive content analysis based on qualitative interviews (KOPAL-Study)

BackgroundChronic, non-malignant diseases (CNMD) like chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and dementia in advanced stages are very burdensome for patients. Timely palliative care with strong collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams can reduce symptom burden, hospitalization rates, hospitalization costs and overall healthcare costs. The KOPAL-study on strengthening interprofessional collaboration for patients with palliative care needs tested the effect of an intervention comprising of a SPHC nurse assessment and an interprofessional case conference. This qualitative evaluative study explores patients’, proxies’ and their associates’ motivation to participate in the KOPAL-study and views on the (benefits of the) intervention.MethodsWe interviewed 13 male and 10 female patients as well as 14 proxies of patients with dementia and six associates of study participants using a semi-structured interview guide. All interviews were digitally recorded, transcribed verbatim and analysed with deductive-inductive qualitative content analysis.ResultsMotivation for participation was driven by curiosity, the aim to please the GP or to support research, respectively to help other patients. Few interviewees pointed out to have expected positive effects for themselves. The nurse visit was evaluated very positively. Positive changes concerning health care or quality of life were reported sparsely. Most study participants did not prepare for the SPHC nurse assessment. They had no expectations concerning potential benefits of such an assessment, the interdisciplinary case conference and an early integration of palliative care. The majority of interviewees reported that they did not talk about the nurse visit and the interprofessional case conference with their GPs.ConclusionOur results lead to the conclusion that SPHC nurses can serve as an advocate for the patient and thereby support the patients’ autonomy. GPs should actively discuss the results of the interdisciplinary case conference with patients and collaboratively decide on further actions. Patient participation in the interdisciplinary case conference could be another way to increase the effects of the intervention by empowering patients to not just passively receive the intervention.Trial registrationDRKS00017795 German Clinical Trials Register, 17Nov2021, version 05.

End of life care for people with dementia and comorbid cancer: recent studies and research gaps.

This narrative review examines recent research on end of life (EOL) care for people with dementia and comorbid cancer, highlighting the complexity and challenge of providing effective EOL care for this group and areas of interest for future research. People with cancer and dementia and their family/supporters have more complex care and support needs at EOL that are less well met than those of older adults with cancer alone, including questionable use of aggressive EOL care interventions, poorer access to specialist palliative care teams and poor pain management. Those diagnosed with dementia at the same time as, or after their cancer diagnosis, are at greater risk of aggressive EOL care and EOL cancer treatment and care plans that are not able to meet their care needs as dementia progresses. There is a lack of research on EOL care for people with cancer and dementia. There is little understanding of what good care for this population looks like and if and how EOL care can best meet the needs of people with cancer and dementia or their carers/supporters. More research is needed to inform improved care for this population.

Using Palliative Care Needs Rounds in the UK for care home staff and residents: an implementation science study.

Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this. To co-design and implement a scalable UK model of Needs Rounds. A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework. Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each. Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings). (1) Monthly hour-long discussions of residents' physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings. A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement. Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members. The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents' last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services' complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality. COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost-benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care. Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff. Conduct analysis of costs-benefits and treatment effects. Engagement with commissioners and policy-makers could examine integration of Needs Rounds into care homes and primary care across the UK to ensure equitable access to specialist care. This study is registered as ISRCTN15863801. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information.

Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research

&lt;b&gt;Background&lt;/b&gt; Home is the preferred place of care and death for most people with advanced illness. &lt;b&gt;Aim&lt;/b&gt; To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. &lt;b&gt;Design and Setting&lt;/b&gt; A scoping literature review in accordance with the PRISMA-ScR guideline. &lt;b&gt;Method&lt;/b&gt; The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. &lt;b&gt;Results&lt;/b&gt; In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. &lt;b&gt;Conclusion&lt;/b&gt; There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.

Characteristics of timely integration of palliative care into oncology hospital care for patients with incurable cancer: results of a Delphi Study.

To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3months should be offered a consultation (71%). The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.

Relevance of Patient-Reported Outcome Measures in Patients with Cancer: Detection of Underrated Psychological Distress of Palliative Care Patients in an Outpatient Setting.

The overall level of physical and psychological symptom burden of advanced cancer patients (ACP) in an outpatient setting is notoriously difficult to assess. Therefore, more efficient and objective assessment is needed to accomplish this important task. The aim of this study was to compare the physical and psychological symptom burden rated by palliative care nurse (PCN) versus patient's self-rating. This retrospective German cohort study analyzed symptom burden using an electronic patient-reported outcome measure (ePROM). After referral to an outpatient specialized palliative care team, a PCN assessed the patient's symptoms both up to three months before initial presentation (IP) and at IP.Group differences were identified using analyses of variance (ANOVA). Further descriptive analysis of patient characteristics was used. The study enrolled 164 ACP who were referred to a specialized palliative care (SPC) team. Mean age was 62 (± 12.6) years. Gastrointestinal (n = 46; 28.0%), lung (n = 32; 19.5%), and breast cancer (n = 34; 20.7%) were the most common entities. Most frequent reasons for referral were pain (n = 55; 33.5%) and social care problems (n = 36; 22.0%). Patients reported significantly higher grades on depression (n = 144; Z = -2.8, p = 0.005), anxiety (n = 144; Z = -2.376, p = 0.018), and worsened general condition (n = 139; Z = -7.005, p < 0.001). ACP in an outpatient setting were more frequently referred to SPC for pain management and assistance with social problems with regard to the cancer and its limitations. Psychological distress was underrated by the PCN in comparison with patient self-reporting through ePROM. This underlines the importance of self-reported outcome measurement.

Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol

BackgroundPalliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers.MethodsA randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a “Peer-to-peer session”, two “Get-apart sessions” and online sessions. The “Peer-to-peer session” and the “Get-apart sessions” will be discussions about topics suggested by participants. The “Get-apart sessions” will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance.DiscussionThis study aims to demonstrate the impact of integrating palliative care into the PR education program.Trial registrationThe trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547).

Enhanced supportive care in cancer centres: national cross-sectional survey

Objectives‘Early’ specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. ‘Enhanced supportive care’ (ESC) aims to facilitate earlier...

Heart failure and the cost of dying: must the ferryman always be paid?

Provision of palliative care in chronic heart failure (CHF) can support complex decision-making, significantly improve quality of life and may lower healthcare costs. To examine whether healthcare costs differed in terminal admissions according to the adoption of a palliative approach. Retrospective review of medical records and costing data for all admissions resulting in death from CHF (July 2011 to December 2019),analysed as two groups (2011-2016 and 2016-2019) because of background changes in costings. Admissions with CHF resulting in death in an Australian tertiary referral centre. The cohort (n = 439) were elderly (median age 83.7 years, interquartile range (IQR) = 77.6-88.7 years) and mostly men (54.9%). Half (230, 52.4%) were referred to a specialist palliative care team, whereas over a third (172, 39.2%) received a palliative approach. Receiving a palliative approach was associated with a nonstatistically significant lower admission cost (AU$12 710 vs AU$15 978; P = 0.19) between 2011 and 2016 (n = 101, 38.8%) and a significantly lower cost (AU$11 319 vs AU$15 978; P < 0.01) between 2016 and 2019 (n = 71, 39.7%). Intensive care admission resulted in the single greatest additional cost at AU$14 624 (IQR = AU$4130-AU$44 197) (n = 48, 2011-2016). Median terminal admission cost was lower for patients with comfort goals of care (P < 0.01), without life-sustaining interventions (P < 0.01) or who received a palliative approach (P < 0.01). Referral to inpatient specialist palliative care or receiving a palliative approach resulted in comparable admission costings (AU$11 621 [IQR = AU$4705-AU$32 457] and AU$11 466 [IQR = AU$4973-AU$25 614]). A palliative approach in terminal CHF admission may improve quality at the end of life and decrease costs associated with care.

Are We Consulting, Sharing Care, or Taking Over? A Conceptual Framework.

Primary- and specialist-level palliative care services are needed. They should work collaboratively and synergistically. Although several service models have been described, these remain open to different interpretations and deployment. This article describes a conceptual framework, the Consultation-Shared Care-Takeover (C-S-T) Framework, its evolution and its applications. An iterative process informed the development of the Framework. This included a symposium, literature searches, results from three studies, and real-life applications. The C-S-T Framework represents a spectrum anchored by the Consultation model at one end, the Takeover model at the other end, and the Shared Care model in the center. Indicators, divided into five domains, help differentiate one model from the other. The domains are (1) Scope (What aspects of care are addressed by the palliative care clinician?); (2) Prescriber (Who prescribes the treatments?); (3) Communication (What communication occurs between the palliative care clinician and the patient's attending clinician?); (4) Follow-up (Who provides the follow-up visits and what is their frequency?); and (5) Most responsible practitioner (MRP) (Who is identified as MRP?). Each model demonstrates strengths, limitations, uses, and roles. The C-S-T Framework can be used to better describe, understand, assess, and monitor models being used by specialist palliative care teams in their interactions with primary care providers and other specialist services. Large studies are needed to test the application of the Framework on a broader scale in health care systems.

USING MULTI-LEVEL MODELING TO EXAMINE RACIAL DISPARITIES IN PALLIATIVE CARE AMONG OLDER ADULTS WITH HEART FAILURE

Abstract Studies have found persistent disparities in guideline-concordant cares for heart failure among patients who self-identify as Black. We investigated how the guideline-concordant specialist palliative care (SPC) varied with race among older adults with advanced heart failure (AHF). We identified 16,464 older adults aged ≥65y (median: 74y) with AHF by ICD-9/10 codes seen between 1/1/2018-7/1/2020 in 83 Veterans Affairs Medical Centers (VAMC). In conventional logistic regression without accounting for between-VAMC variation, Black (28%) race was less likely to receive SPC services than White (70%) race [adjusted odds ratio (aOR) of 0.91 (95% Confidence Intervals (CI): 0.84,0.99); predicted probability: 27.6% vs. 29.5%], independent of age, sex and comorbidity. This association diminished to null [aOR: 0.99 (95% CI: 0.90,1.08)] after adding a random intercept for VAMCs (multi-level model (MLM)). Expanding the MLM with specific VAMC characteristics (SPC team staffing (p&amp;lt; 0.05), facility complexity and urbanicity) as fixed effects improved overall model fit (area under ROC: 0.68 vs 0.61, p&amp;lt; 0.05), and accounted for 17% of the VAMC-level variance (intraclass correlation coefficient: 0.069 vs 0.083). There were no cross-level interactions between race and VAMC characteristics. These findings suggest that variation in the individual probability of receiving SPC between Black and White race in this older AHF cohort may be partially explained by between-VAMC differences in SPC staffing and other facility characteristics. To promote equitable access to SPC for older adults with AHF, further research is needed to examine service delivery characteristics and broader contextual determinants of health, such as area socioeconomic disparity of healthcare facilities

Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia

Background/objectivesShared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little...

Cost-effectiveness of a specialist palliative care nurse-patient consultation followed by an interprofessional case conference for patients with non-oncological palliative care needs: results of the KOPAL trial.

Worldwide, progressive chronic, non-malignant diseases are highly prevalent. Especially with increasing age, they are characterised by high hospitalisation rates and high healthcare costs. Improved interprofessional collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams might reduce hospitalisation while improving symptoms and quality of life, or preventing them from deterioration. The aim of this study was to examine the cost-effectiveness of a newly developed intervention in patients with advanced chronic, non-malignant diseases consisting of a structured palliative care nurse-patient consultation followed by an interprofessional telephone case conference. The analysis was based on data from 172 participants of the KOPAL multi-centre, cluster randomised controlled trial. Patients with advanced congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or dementia were randomised into intervention group (IG) and control group (CG, usual care). Cost-effectiveness was examined over 48 weeks from a societal and healthcare payer's perspective. Effects were quantified as quality-adjusted life years (QALYs, EQ-5D-5L). Incremental costeffectiveness ratios were calculated and cost-effectiveness acceptability curves were constructed. Baseline imbalances in costs and effects could be observed between IG and CG. After adjusting for these imbalances and compared to the CG, mean costs in the IG were non-significantly higher from a societal and lower from a payer's perspective. On the effect side, the IG had marginally lower mean QALYs. The results were characterized by high statistical uncertainty, indicated by large confidence intervals for the cost and effect differences between groups and probabilities of cost-effectiveness between 18% and 65%, depending on the perspective and willingness-to-pay. Based on the results of this study, the cost-effectiveness of the KOPAL intervention was uncertain. The results highlighted (methodological) challenges of economic evaluations in patients with chronic, non-malignant diseases related to sample size, heterogeneity of participants, and the way the intervention effectiveness is typically captured in economic evaluations.

Service Level Characteristics of Rural Palliative Care for People with Chronic Disease.

Despite clear benefit from palliative care in end-stage chronic, non-malignant disease, access for rural patients is often limited due to workforce gaps and geographical barriers. This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. A cross-sectional online survey was distributed by email to rural health service leaders. Nominal and categorical data were analyzed descriptively, with free-text questions on barriers and facilitators in chronic disease analyzed using qualitative content analysis. Of 42 (61.7%) health services, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. A total of 17 (41.5%) reported an on-site specialist palliative care team, primarily nurses (19, 59.5%). Nearly all services (41, 95.3%) reported off-site specialist palliative care access, including: established external relationships (38, 92.7%); visiting consultancy (26, 63.4%); and telehealth (18, 43.9%). Perceived barriers in chronic disease included: lack of specific referral pathways (18; 62.1%); negative patient expectations (18; 62.1%); and availability of trained staff (17; 58.6%). Structures identified to support palliative care in chronic disease included: increased staff/funding (20, 75.0%); formalized referral pathways (n=18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50%). Palliative care service structure and capacity varies across rural areas, and relies on a complex, at times ad hoc, network of onsite and external supports. Services for people with chronic, non-malignant disease are sparse and largely unknown, with a call for the development of specific referral pathways to improve patient care.

A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings

Background: Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to community-based care after hospitalisation. Aim: To understand what happens between inpatient specialist palliative care teams and the generalist teams who provide post-discharge palliative care for shared patients. Design: A constructivist grounded theory approach, using semi-structured interviews and constant comparative analysis, including coding, memo-writing and diagram construction. Settings/participants: Interviews (n = 21) with specialist palliative care clinicians and clinicians in other specialties providing generalist palliative care. Specialists had training in palliative care and worked in specialty palliative care practices; other clinicians worked in primary care or oncology and did not have specialised palliative care training. Results: A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings was constructed. Two states of inter-team functioning were found which related to how teams perceived themselves: separate teams or one cross-boundary team. Three conditions influenced these two states of inter-team functioning: knowing the other team; communicating intentionally; and acknowledging and valuing the role of the other team. Conclusions: Teams need to explicitly consider and agree their mode of functioning, and enact changes to enhance knowledge of the team, intentional communication and valuing other teams’ contributions. Future research is needed to test or expand this theory across a range of cultures and contexts.

Perspectives of nursing home executives on collaboration with GPs and specialist palliative care teams.

Background: Nursing home (NH) staff, general practitioners (GPs) and specialist outpatient palliative care teams are expected to cooperate to ensure adequate palliative care for NH residents in Germany. Aim: The aim of this study was to investigate the perspective of NH executives concerning collaboration with GPs and specialist outpatient palliative care teams. Methods: We conducted semi-structured telephone interviews with executives of NHs in the federal state of Baden-Wuerttemberg, Germany. Interviews were analysed by means of structured content analyses. Results: Executives of 20 NHs participated in the study, eight NHs cooperate with specialist outpatient palliative care teams. Content analysis resulted in two main categories: 'general palliative care by primary carers' and 'collaboration with SAPV in NHs', each with three first-order subcategories. The main barriers to adequate palliative care were reported to be lack of palliative care knowledge in GPs and NH staff, refusal of some GPs to cooperate with specialist outpatient palliative care teams and staff shortage in NHs. Specialist palliative care involvement was described to result in improved palliative care. Conclusion: Solutions seem obvious, e.g., further education in palliative care or round tables to discuss collaboration. However, studies show that even comprehensive educational and management interventions to implement palliative care do not always result in long-term effects and further research is needed.