A national survey of the management of implantable cardioverter defibrillators in specialist palliative care settings

IntroductionThe end of life of patients with head and neck cancer (HNC) is plagued by significant morbidity and high symptom burden, emphasizing the need for palliative care. Our aim was to evaluate the utilization of health care services, including specialist palliative care (SPC), among patients with HNC at the end of life. In addition, we wanted to explore the timing of SPC contact on the utilization of health care services at the end of life.MethodsThe study population consisted of all 281 patients who died of HNC in 2019 in Finland. Data were collected from nationwide registries. Patients were divided into two groups according to the timing of their first contact with an SPC unit: early (> 30 days before death), and late/no (≤ 30 days before death or no contact).ResultsMean age at death was 72 years, and 66% were male. The hospital was the most common place of death (82%). Ninety-three (33%) patients had contact with an SPC unit, and the median time of the first SPC contact was 62 days before death. Comparing those with early and late/no SPC contact, the early group was significantly associated with lower secondary health care hospitalization (31% vs. 53%; p = 0.002) and emergency care utilization (33% vs. 52%; p = 0.006) during the last month of life. The early SPC group was also associated with higher utilization of home care (52% vs. 36%; p = 0.021), SPC outpatient clinic (24% vs. 5%; p < 0.001), SPC ward (22% vs. 4%; p < 0.001), and palliative hospital-at-home services (45% vs. 5%; p < 0.001) during the last month of life. Among patients with the early SPC contact, SPC ward was significantly more likely to be the place of death (18% vs. 4%, p < 0.001) compared with patients with late/no SPC contact.ConclusionPatients with HNC utilize health care services at high rates at the end of life. Early SPC contact is associated with increased SPC service use and decreased utilization of secondary health care and emergency care, highlighting the need for early and greater access to SPC services for patients with HNC.

To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.

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.

Experiences with a Shared Position Between Specialized and Basic Palliative Care: A Qualitative Study.

BackgroundConstipation is a common symptom for patients receiving palliative care. Whilst national clinical guidelines are available on the management of constipation for people with advanced cancer in specialist palliative care...

Transitions in Palliative Care Provision Across Healthcare Settings in the US: A Grounded Theory of Interdependence Between Specialist and Generalist Palliative Care Teams (SCI932)

ObjectivesCity Hospice is a community specialist palliative care (SPC) team caring for the population of Cardiff (372,000). A service evaluation was undertaken to review the scope of SPC input required...

The Association for Palliative Medicine (APM) ran a national Specialist Palliative Care (SPC) service evaluation from 2013, using the Family Satisfaction with End-of-Life Care (FAMCARE-2) questionnaire to measure the satisfaction of bereaved main caregivers with SPC services. This feature article reviews ten years of the FAMCARE-2 audit (2013-2022), summarising data from bereaved carers via SPC teams alongside a one-off survey involving the service leads. During the decade, 573 SPC teams across the UK returned 12 573 completed FAMCARE-2 questionnaires, representing 160 SPC services, with a mean of 1048 questionnaires per annum (804-1668). Responses spanned three settings: hospice (48%), home (39%) and hospital (13%).Bereaved caregivers reported highest satisfaction for patients' dignity; 92.2% of respondents were satisfied, while dissatisfaction was highest with the speed deceased patients' symptoms were treated (6.2%). There was no significant difference in satisfaction rate between different SPC teams (home, hospital, hospice) with limited year-to-year variation in responses (Kruskal-Wallis test η2: -0.17).Participation by community-based home care teams increased during the 10-year period, but reduced for hospital specialist teams. The number of questionnaires returned decreased by 40%.Notably, of those responding to the one-off survey, 90% of services found FAMCARE-2 valuable for learning, inspection or reflective practice. Bereaved caregivers consistently expressed satisfaction with SPC services across settings over the 10-year period. Despite limited applicability of findings due to annual decline in participation and lack of demographic data, FAMCARE-2 remains the only nationally used tool for evaluating SPC in the UK.

Introduction This 18 month project aimed to enhance the opportunities for patients with end-stage heart failure (HF) and their families to benefit from hospice and specialist palliative care services (SPCS) to facilitate them to plan for, and experience better end of life care. Method A project team comprising representatives from the HF service, care of older people, primary care, hospital palliative care, patients and families and hospice representatives worked alongside a project lead to design a model of care and pathway for people with end stage HF. A new Supportive and Palliative Care in Heart Failure MDT was established, providing an interdisciplinary forum for identification of those at end of life, and aiding referral to SPCS. A patient information leaflet was designed and printed. Education was delivered to the HF team on palliative care principles, and to the SPCS on management of end stage HF. Results There is now an established pathway for care of these patients which has improved understanding and communication between the HF and specialist palliative care teams. The MDT meeting is held twice monthly and HF referrals to specialist palliative care have more than doubled (96 patients). A documentation audit of advance care plan (ACP) discussions demonstrates that 64% patients reviewed at MDT had discussions about their wishes. However, less than half of the patients had entries on the Electronic Palliative Care Coordination System (EPaCCS) with only 6% having documentation of ACP discussions. Conclusions Feedback such as ‘All care and treatment have been excellent’. (Patient) and ‘Much better links between heart failure team and palliative care team with great benefits for patients’ (Staff) indicate that this collaborative project has been a positive experience, enabling more patients and families to access hospice and SPCS in their locality. Further work is required to increase use of EPaCCS and sharing of ACP discussions.

<h3>Background</h3> It is well established that patients with advanced gastric and pancreatic carcinoma on second line chemotherapy have a poor prognosis. Studies have shown that early Specialist Palliative Care (SPC) input can improve symptom burden and quality of life. The aims of this project are to improve earlier access to SPC services, assess symptom for patients with advanced gastric and pancreatic cancer and to establish earlier Advance Care Planning (ACP) discussions with patients. <h3>Method</h3> All patients who failed to respond to first line treatment and progressed to second line chemotherapy, with above cancers were selected for SPC consultations at the chemotherapy centre in a tertiary oncology centre. Data collected between September 2020 to September 2021. Audit cycles were repeated in February 2021 with implementations of ACP leaflets and they were all given follow-up consultations. <h3>Results</h3> 14 patients were assessed in first cycle. 50% had symptoms and received medical interventions by SPC team. 93% of patients were discharged from SPC after first visit as 60% already known to community SPC team and 50% were asymptomatic. Only 43% patients were introduced to ACP, 7% had Preferred Place of Death (PPD) and 14% had Preferred Place of Care (PPC) discussions. 7 patients were seen in second cycle. With ACP leaflets' implementation, this led to a significant improvement of PPD (56%) and PPC (86%) discussions. 86% of patients had symptoms and received medical interventions by SPC team, of which 33% already reported improved symptoms at first follow-up consultations. <h3>Conclusion</h3> This project demonstrated that proactive SPC involvement can enable earlier ACP discussions and improve symptom burden. With the above interventions, this has led to an increase of ACP conversations. Results have shown that increased collaboration between upper gastrointestinal cancer and SPC services in the future would be beneficial for this group of patients.

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Background:Technological advancements have rapidly increased the use of point-of-care ultrasound (POCUS) across various medical disciplines, leading to real-time information for clinicians at the bed side. However, literature reveals scant evidence of POCUS use in palliative care. The objective of this study was to examine the use of POCUS in a specialist palliative care setting.Methods:A retrospective chart review was conducted from January 2018 to June 2019 in Brampton, Canada, to evaluate characteristics of patients for whom POCUS was utilized. Patients were identified through pre-existing logs and descriptive information was collected from electronic health records, including demographic information, life-limiting diagnosis, patient assessment location, diagnosis made with POCUS, and, if applicable, volume of fluid drained.Results:We identified 126 uses of POCUS in 89 unique patients. Sixty-two patients (69.7%) had a cancer diagnosis, with patients most commonly suffering from gastrointestinal, lung, and breast pathologies. Sixty-one POCUS cases (48.4%) were in the outpatient setting. Eighty-one POCUS cases (64.3%) revealed a diagnosis of ascites and 21 POCUS cases (16.7%) revealed a diagnosis of pleural effusion. Other diagnoses made with POCUS included bowel obstruction, pneumonia, and congestive heart failure. During the study period, 52 paracentesis and 7 thoracentesis procedures were performed using POCUS guidance.Conclusion:We identified multiple indications in our specialist palliative care setting where POCUS aided in diagnosis/management of patients in both inpatient and outpatient settings. Further studies can be conducted to identify the potential benefits in symptom burden, patient and caregiver satisfaction, and health care utilization in palliative care patients receiving POCUS.

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers. To explore factors that support partnership working between specialist and generalist palliative care providers. Systematic review. A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.

Background: Hospital-based specialist palliative care services are common, yet existing evidence of inpatient generalist providers’ perceptions of collaborating with hospital-based specialist palliative care teams has never been systematically assessed. Aim: To assess the existing evidence of inpatient generalist palliative care providers’ perceptions of what facilitates or hinders collaboration with hospital-based specialist palliative care teams. Design: Narrative literature synthesis with systematically constructed search. Data sources: PsycINFO, PubMed, Web of Science, Cumulative Index of Nursing and Allied Health Literature and ProQuest Social Services databases were searched up to December 2014. Individual journal, citation and reference searching were also conducted. Papers with the views of generalist inpatient professional caregivers who utilised hospital-based specialist palliative care team services were included in the narrative synthesis. Hawker’s criteria were used to assess the quality of the included studies. Results: Studies included (n = 23) represented a variety of inpatient generalist palliative care professionals’ experiences of collaborating with specialist palliative care. Effective collaboration is experienced by many generalist professionals. Five themes were identified as improving or decreasing effective collaboration: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists’ expertise. Conclusion: Fuller integration of specialist palliative care services, timely sharing of information and mutual respect increase generalists’ perceptions of effective collaboration. Further research is needed regarding the experiences of non-physician and non-nursing professionals as their views were either not included or not explicitly reported.

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.