Palliative Team Research Articles

Initiating Prognostic Talk During Hospice Multidisciplinary Team Meetings: A Conversation Analytic Study.

Objective: Guidelines recommend that patients' prognoses should be discussed by the palliative care multidisciplinary team. However, there is a lack of evidence on how multidisciplinary teams carry out prognostic discussions, and especially how prognostic talk is initiated during team meetings. This study explored how prognostic talk is initiated and responded to during meetings of a hospice multidisciplinary team. Methods: Video-recordings of 24 inpatient multidisciplinary team meetings in a UK hospice were collected from May to December 2021. A total of 65 multidisciplinary team members participated in the meetings. Recordings were transcribed and analysed using Conversation Analysis. Results: Prognostic talk was initiated during multidisciplinary team members' patient case presentations. Case presentations followed a certain template, and prognoses could be initiated as responses to template items such as the patient's Phase of Illness and Karnofsky's Performance Status score and the patient's main diagnosis and issues. Prognoses also occurred as accounts for a lack of template item responses. Beyond the patient case presentation, prognostic talk was initiated in relation to discharge planning. Prognoses appeared with sequences of assessments that accounted for them. When a prognosis was provided, it received confirming minimal responses from other team members. Conclusions: Patients' prognoses were embedded into other care discussions during meetings of a hospice multidisciplinary team. These findings can be used to inform the development of clinical guidelines and interventions aiming at improving multidisciplinary team discussions around prognosis in the future.

Towards a Crisis Management Playbook: Hospice and Palliative Team Members’ Views Amid COVID-19

ContextThe critical role of hospice and palliative care in response to the COVID-19 pandemic is well recognized, but there is limited evidence to guide healthcare leadership through future crises. ObjectivesOur goal was to support future organizational resilience by exploring hospice and palliative team members’ perspectives on crisis leadership during the COVID-19 pandemic in New York City (NYC). MethodsThis qualitative descriptive study used individual, semi-structured interviews of purposively sampled interdisciplinary team members. Enrollment sites were two large NYC metro hospice care organizations and one outpatient palliative care practice. We asked participants to complete a demographic form and a 45–60 minute interview. We used descriptive statistics and thematic analysis, respectively, for data analysis. We triangulated the data by presenting preliminary study findings to a group of clinicians (n=21) from one of the referring organizations. ResultsParticipants (n=30) were professionally diverse (e.g., nurses, physicians, social workers, chaplains, administrators), experienced (mean=17 years; 10 years in hospice), and highly educated (83% ≥ master's degree). About half (n=15) self-identified as white, non-Hispanic, and nearly half (n=13) self-identified as being from a racial/ethnic minoritized group. Two (n=2) did not wish to self-identify. We identified four themes that reflected challenges and adaptive responses to providing care during a crisis: Stay Open and Stay Safe; Act Flexibly; Lead Adaptively; and Create a Culture of Solidarity. ConclusionWhile additional work is indicated, findings offer direction for a crisis management playbook to guide leadership in hospice, palliative care, and other healthcare settings in future crises.

Barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology, a descriptive qualitative study.

Initiation of palliative care early in the disease trajectory is beneficial for patients with a life-limiting disease. However, palliative care is still introduced rather late or not at all. Therefore, this study aims to explore barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology. A descriptive interview-based study was conducted from a critical realist perspective until data sufficiency was reached. Fifteen nurses presented and discussed a patient for whom palliative care was initiated too late. Template analysis was conducted to develop themes and subthemes. Five key themes were extracted: (1) communication, (2) fear, (3) personal beliefs about life and death, (4) ambiguity in terminology and (5) workload and time pressure. Barriers related to poor interdisciplinary communication were therapeutic obstinance, hierarchy, unawareness of the patient's wishes and fear of saying something inappropriate. Other barriers were patients' religious beliefs which often hindered the use of sedatives or morphine and led to discomfort and time restraints. A palliative support team in hospital and advance care planning (ACP) were enablers for early palliative care. This study started from a negative experience, leading to identification of a lot of barriers and only a few facilitators. The limited sample size and the restriction to two wards within one single hospital limit the diversity of perspectives and the generalisability of the findings. More attention is needed for ACP and interdisciplinary communication. Palliative care, including ACP, and interdisciplinary communication should be included in the basic curricula of all healthcare professional courses. Further research is needed to explore barriers and facilitators to early initiation of palliative care in other healthcare settings and patient populations. This is crucial in order to develop and implement sustainable interventions for specific groups of patients.

Destitute and dying: interventions and models of palliative and end of life care for homeless adults – a systematic review

BackgroundHomeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with...

Outcomes of patients admitted with malignant small bowel obstruction: a subgroup multicentre observational cohort analysis

Introduction and purpose of the studySmall bowel obstruction (SBO) accounts for a substantial proportion of emergency surgical admissions. Malignancy is a common cause of obstruction, either due to a primary tumour or intra-abdominal metastases. However, little is known regarding the current treatment or outcomes of patients with malignant SBO. This study aimed to characterise the treatment of malignant SBO and identify areas for potential improvement and compare overall survival of patients with malignant SBO to patients with non-malignant SBO.Materials and methodsThis was a subgroup analysis of a multicentre observational study of patients admitted with SBO. Details regarding these patients’ diagnoses, treatments, and outcomes up to 1-year after admission were recorded. The primary outcome was overall survival in patients with malignant SBO.ResultsA total of 316 patients with small bowel obstruction were included, of whom 33 (10.4%) had malignant SBO. Out of the 33 patients with malignant SBO, 20 patients (60.6%) were treated with palliative intent although only 7 patients were seen by a palliative team during admission. Nutritional assessments were performed on 12 patients, and 11 of these patients received parenteral nutrition. 23 patients underwent surgery, with the most common surgical interventions being loop ileostomies (9 patients) and gastrointestinal bypasses (9 patients). 4 patients underwent right hemicolectomies, with a primary anastomosis formed and 1 patient had a right hemicolectomy with a terminal ileostomy. Median survival was 114 days, and no difference was seen in survival between patients treated with or without palliative intent.ConclusionMalignant SBO is associated with significant risks of short-term complications and a poor prognosis. Consideration should be given to the early involvement of senior decision-makers upon patient admission is essential for optimal management and setting expectation for a realistic outcome.

Palliative Rehabilitation in Patients with Cancer: Definitions, Structures, Processes and Outcomes.

This review examines the literature on palliative rehabilitation for patients with advanced cancer, focusing on definitions, structures, processes, and outcomes. Palliative cancer rehabilitation targets comfort and functional improvement for patients with limited rehabilitation potential across various settings. The palliative cancer rehabilitation team, typically led by a physician, coordinates symptom management and referrals to rehabilitation and other allied healthcare professionals as needed. The outcomes of palliative cancer rehabilitation varied widely by goals, settings, and interventions. Studies in hospice settings generally reported improved symptom control; inpatient rehabilitation had mixed functional outcomes; and outpatient palliative rehabilitation may contribute to enhanced functional and symptom outcomes, especially among patients with higher baseline function. Palliative cancer rehabilitation emphasizes a collaborative approach that integrates palliative care with rehabilitation interventions, aiming to enhance quality of life and address diverse patient needs. Further research and standardization are necessary to realize its full potential.

Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009–2021)

BackgroundPeople with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking.AimTo explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis.DesignWe conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation.Setting/participantsWe limited the analysis to the subsample of people aged over 64.ResultsThe prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home.ConclusionsThe records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients’ principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it.Trial registrationNo registration.

Evidence-based physiotherapy interventions: evaluation of current practice in a palliative care service

Maintaining independence and quality of life are significant issues for patients with a life-limiting illness and physiotherapists play an essential role in the palliative care multidisciplinary team in maintaining, restoring, and improving physical function and quality of life (QOL). This study aims to describe current physiotherapy interventions utilized in a palliative care service and compare it to the evidence base of physiotherapy interventions in palliative care. An audit was conducted of all inpatient and community palliative care patients referred for physiotherapy review and intervention, over a 4-week period. A literature search was conducted and the level of evidence for individual physiotherapy interventions was assessed. The audit identified 35 patients referred to the Physiotherapist for the assessment and management of mobility, falls risk management and prevention, lymphoedema management and assessment of functional decline. The most frequently performed physiotherapy assessments and interventions were for mobility and transfer (94.3%), falls prevention and management (74.3%), reconditioning and strengthening (57.1%), and exercise prescription (48.6%). Physiotherapy in the palliative care setting is becoming more accepted to help benefit the function and QOL of patients with advanced progressive diseases. This audit highlights the importance of these interventions in assisting patients to manage their symptoms and function at home.

Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population.

With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.

Emergency physicians' and nurses' perception on the adequacy of emergency calls for nursing home residents: a non-interventional prospective study.

A considerable percentage of daily emergency calls are for nursing home residents. With the ageing of the overall European population, an increase in emergency calls and interventions in nursing homes (NH) is to be expected. A proportion of these interventions and hospital transfers may be preventable and could be considered as inappropriate by prehospital emergency medical personnel. The study aimed to understand Belgian emergency physicians' and emergency nurses' perspectives on emergency calls and interventions in NHs and investigate factors contributing to their perception of inappropriateness. An exploratory non-interventional prospective study was conducted in Belgium among emergency physicians and emergency nurses, currently working in prehospital emergency medicine. Electronic questionnaires were sent out in September, October and November 2023. Descriptive statistics were used to analyze the overall results, as well as to compare the answers between emergency physicians and emergency nurses about certain topics. A total of 114 emergency physicians and 78 nurses responded to the survey. The mean age was 38 years with a mean working experience of 10 years in prehospital healthcare. Nursing home staff were perceived as understaffed and lacking in competence, with an impact on patient care especially during nights and weekends. General practitioners were perceived as insufficiently involved in the patient's care, as well as often unavailable in times of need, leading to activation of Emergency Medical Services (EMS) and transfers of nursing home residents to the Emergency Department (ED). Advance directives were almost never available at EMS interventions and transfers were often not in accordance with the patient's wishes. Palliative care and pain treatment were perceived as insufficient. Emergency physicians and nurses felt mostly disappointed and frustrated. Additionally, differences in perception were noted between emergency physicians and nurses regarding certain topics. Emergency nurses were more convinced that the nursing home physician should be available 24/7 and that transfers could be avoided if nursing home staff had more authority regarding medical interventions. Emergency nurses were also more under the impression that pain management was inadequate, and emergency physicians were more afraid of the medical implications of doing too little during interventions than emergency nurses. Suggestions to reduce the number of EMS interventions were more general practitioner involvement (82%), better nursing home staff education/competences (77%), more nursing home staff (67%), mobile palliative care support teams (65%) and mobile geriatric nursing intervention teams (52%). EMS interventions in nursing homes were almost never seen as necessary or indicated by emergency physicians and nurses, with the appropriate EMS level almost never being activated. The following key issues were found: shortages in numbers and competence of nursing home staff, insufficient primary care due to the unavailability of the general practitioner as well as a lack of involvement in patient care, and an absence of readily available advance directives. General practitioners should be more involved in the decision to call the Emergency Medical Services (EMS) and to transfer nursing home residents to the Emergency Department. Healthcare workers should strive for vigilance regarding the patients' wishes. The emotional burden of deciding on an avoidable hospital admission of nursing home residents, perhaps out of fear for medico-legal consequences if doing too little, leaves the emergency physicians and nurses frustrated and disappointed. Improvements in nursing home staffing, more acute and chronic general practitioner consultations, and mobile geriatric and palliative care support teams are potential solutions. Further research should focus on the structural improvement of the above-mentioned shortcomings.

Chemotherapy in the last 30 days of life, correlation with age and palliative care referral: A 1-year retrospective gastrointestinal program experience at SQCCCRC.

e24038 Background: Chemotherapy in the last days of life can carry unnecessary toxicities to the patient with no significant impact on survival and disease outcome. This is becoming of greater interest with the involvement of palliative care in patient’s management along with the advent of new therapeutic options with progressively increased cost of treatment. Methods: In our retrospective study, we aimed to analyze retrospectively the data of GI tumors treated at SQCCCRC over one year, by looking at the possible factors influencing the time from last treatment to death. We conducted chart review of all death that occurred between January 2023 and December 2023 in the GI cancer program at SQCCCRC. Information on demographics, type of GI cancer, type, intent and route of chemotherapy, line of chemotherapy and referral to palliative care were collected. Results: A total of 65 patients died within the GI cancer program between January 1st, 2023, to dec 31st, 2023. Most (72.7%) of the patients died of disease progression. Intent for chemotherapy was palliative in 90.9% of cases. Chemotherapy was parenteral (Intravenous) for the majority (60%, 38/63) of the patients. From all the recovered deaths, a total of 52 patients (82%) were referred to palliative team before death whereas palliative team was involved in the journey of all patients. 12 deaths out of 65 occurred in ICU. Only 11 out of 65 patients died within last 30 days of treatment: 81.8% of them were under palliative care at the time of death. For this group, the median age at diagnosis was 50 yo. Median age at death was 61 yo. 72.7% were male. Primary site of disease was colon followed by stomach. Median time from diagnosis to palliative referral was 13.5 months. 8 patients died within 3.5 days of referral to palliative care. In the logistic regression models, only age at diagnosis was a significant predictor for receiving chemotherapy in the last 30 days of life (p = 0.019). Older age was associated with lower odds of receiving chemotherapy in this period (OR = 0.94, 95% CI = 0.89-0.99). Referral to palliative chemotherapy was not associated with decreased rate of treatment administration within last 30 days of life. Conclusions: While some real-world data suggested correlation between shifting to palliative care and administration of chemotherapy in the last 30 days of life, this was not the case in our collected sample, and only the age of the patient played a role in the chemotherapy timing before death. Further studies are needed to study the reasons behind and the best way to improve patient’s centered approach.

Self-expressed needs and gaps in our care of metastatic breast cancer (MBC): An all-Ireland patient-led online survey (CTRIAL-IE 23-05).

12058 Background: Therapeutic advances have improved MBC survival rates, but patient self-expressed information needs have not been evaluated in Ireland to date. Heretofore, the patient’s voice has not been central to such an assessment, potentially leading to incorrect assumptions about MBC care. Methods: An anonymous online survey was designed by a cohort of 30 patients with MBC facilitated by a multidisciplinary breast cancer specialist taskforce. A questionnaire asked individuals to report their experience across three domains: credible information sources, palliative care access, and mental health. Patients with MBC 18 years or older living on the Island of Ireland were eligible to participate. The survey was publicised in the media and in oncology clinics nationally and was available for 10 weeks. The survey consisted of a mixture of open and closed questions and results were summarized by means of counts and percentages for categorical variables and by means of mean, standard deviation, median and range for continuous variables. Results: Between July-October 2023, 246 patients completed the survey. The median age of responders was 52.5. 99.4% of patients wished to have access to their personal medical records. Over 95% sought information about metastatic breast cancer outside of the clinic. The go-to information source varied (mostly online). No dedicated comprehensive information source on MBC was identified. Over 83% of patients with MBC were amenable to early palliative care referral but oncology teams did not raise this to the majority. Over 87% of patients reported mental health issues and the majority did seek support (88.4%). Living with uncertainty while awaiting scan results commonly led to feelings of anxiousness (79.5%), fearfulness (54.1%) and depression (15.2%). Conclusions: Patient-led research demonstrates that the patients’ voice is imperative to identify meaningful health interventions. System change including rapid streamlined access to personal medical records and the provision of a credible online information source dedicated to MBC may empower patients to enable them to live well for as long as possible. Routine discussion around early palliative care referral and an opt out approach may be of benefit. Acknowledging the high burden of mental health issues among this patient group and ongoing development of support services is crucial. Minimising the time patients live with uncertainty waiting for scan results should be prioritised.

Abstract PO1-09-09: The journey of HR positive, HER2 negative metastatic breast cancer’s patients: heterogeneities and barriers in Brazilian public health system- a national survey

Abstract Background: Breast cancer is the most common neoplasm in Brazilian women, with high percent of patients diagnosed in advanced stages. Metastatic breast cancer (mBC) is a challenge in the country, where 75% of the population is covered by public health system (Sistema Único de Saúde, SUS). We conducted an on-line survey to describe the journey of human epidermal growth factor receptor 2-negative (HER2-), hormone receptor positive (RH+) mBC patients across public scenario in Brazil. Methods: An on-line survey comprised of 39 to 48 (depending on the kind of some questions, which could open another question in case of affirmative answer) objective questions were sent by e-mail to180 oncologists working in public and private health care system. Questions were focused on assessing wait time for first treatment after admission in the hospital in both systems, availability of oncological drugs within SUS according to essential medicines list by World Health Organization, and presence of palliative and multidisciplinary teams in both systems. Continuous variables were measured by median and mean. The level of statistical significance adopted was 5% with Teste p two-sided. Analyses were performed using SAS statistical software (version 25.0). Results: We had 150 respondents working in SUS and private health system, which fulfilled the inclusion criteria to participate in this survey. The other 30 respondents were excluded from the study because they worked exclusively in SUS or exclusively in the private system, and their answers were not analyzed. Median wait time for surgery was 60 days in the SUS (N=150) and 30 days in the private health system (N=150) e (p < 0,0001). Regardless of chemotherapy provided, median waiting time was 30 and 15 days in the SUS (N=150) and the private health system (N=150), respectively (p < 0,0001). Most oncologists in the SUS (N=125, 83.3%) pointed to endocrine therapy as their first-choice treatment in mBC. Concerning endocrine therapy in the SUS, Gonadotropin-Releasing Hormone Agonist (GnRHa) was available, and it was prescribed by 54 (36.0%) and Fulvestrant for 72 (48.0%) of respondents. Considering chemotherapy, weekly paclitaxel alone or combined with platin were available and they were prescribed by 124 (82.6%) and 109 (72.6%) of oncologists respectively. Vinorelbine was available and it was prescribed according to oncologists’ report by 109 (72.6%) and Pegylated liposomal doxorubicin (PLD) by 38 (25.3%) of oncologists. Oncologists answered agree or strongly agree that they had a multidisciplinary care team in SUS 77,3% (N =116) versus 87,3% (N=131) in the private system (p=0.022). Concerning palliative care 66,09% (N= 99) in the SUS versus 82,0% (N=123) in the private system answered that they agreed or strongly agreed that this service was available (p=0.001). Conclusions: The Brazilian government has continuously improved delivery of services and medicines via the public system (SUS), but there are still significant differences within this system and versus the private sector. Unavailability of endocrine therapy agents as GnRHa and Fulvestrant, and some chemotherapy agents as PLD and Vinorelbine for high percentage of patients, raises the existence of disparities within SUS. Also, longer waiting times for treatment in the SUS, lower availability of support teams such multidisciplinary and palliative care, they point out disparities between SUS and private health systems. The lack of a National Cancer Control Program and low health investment by Brazilian government might explain the difference in cancer patients’ access. Citation Format: Heloísa Resende, Igor Soares, Angélica Renó, Ana Cunha, Vinícius Aguiar, Letícia Tureta, Viviane Pereira. The journey of HR positive, HER2 negative metastatic breast cancer’s patients: heterogeneities and barriers in Brazilian public health system- a national survey [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO1-09-09.

A Digital Platform (Telepalliation) for Patients in Palliative Care and Their Relatives: Protocol for a Multimethod Randomized Controlled Trial.

The World Health Organization defines end-of-life palliative care as "prevention and relief of suffering, by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Over 20 million people worldwide are in need of palliative care. In Denmark, palliative care is given at a general and a specialist level. The general level comprises health care professionals (HCPs) who do not perform palliative care full-time. The specialist level comprises specialized palliative care (SPC), where HCPs perform palliative care full-time. In total, 20%-30% of patients who need palliative care are referred to SPC. Challenges with SPC include a short time span from referral to end of life, patients who are very ill and may therefore find it hard to travel to an outpatient clinic, and the SPC unit having a relatively small staff. The need for SPC is expected to rise, as the number of patients dying from terminal diseases is increasing. Telehealth has been successfully implemented in different home care settings, including palliative care. The aim of the study is to present the research design of the clinical testing of a telepalliation program by the use of a digital platform for patients in palliative care and their relatives. The telepalliation program will be conducted as a multimethod randomized controlled trial. The intervention group will follow the telepalliation program, while the control group will follow the traditional standard of care program for palliative care. The primary outcome of the study is increased quality of life. Secondary outcomes include enhanced sense of security; reduced experience of pain; satisfactory experiences of patients and relatives with the TelePal platform and degree of satisfaction in being a part of the program; experiences with the use of the TelePal platform on the part of HCPs and the professionals' experiences of being a part of the program; the use of a cross-sector communication platform and the telepalliation program by patients, relatives, and HCPs; and the projected lower cost of health care services. These outcomes will be assessed using questionnaires, data generated by digital technologies, and semistructured interviews. The collection of data began in May 2021 and will be completed in August 2024. The results of the study will be published in peer-reviewed journals and presented at international conferences. Results from the telepalliation program are expected to be published by fall 2024. The expected outcomes of the study are increased quality of life and increased sense of security. We also expect that the study will have a clinical impact on future telepalliation for those patients who are referred to a palliative team. ClinicalTrials.gov NCT04995848; https://clinicaltrials.gov/study/NCT04995848. DERR1-10.2196/49946.

Patients with palliative needs in a tertiary hospital emergency department in 2021 - retrospective chart review

Introduction: Children with complex chronic diseases and life-limiting conditions require a differentiated and adapted medical approach. OBJECTIVES: Characterise the affluence and management of children, followed by an in-hospital pediatric palliative care support team, who presented to a tertiary hospital pediatric emergency department in 2021. Methods: A one-year retrospective analysis of emergency episodes was performed by consulting medical records. Episodes were categorized, data were recorded anonymously, and descriptive statistical analysis was carried out. Results: Of the 58 pediatric patients monitored by the team, 66% resorted to the emergency department in 2021, leading to 85 admissions (average: two per patient; 82% classified as urgent, very urgent, or immediate). The most frequent admission reasons were respiratory symptoms. Hospitalization was required in 45%: 3 patients transferred from another hospital in the pediatric intensive care unit, 32 to the pediatric ward, and the remaining in the observation service. Blood tests, cultures and imaging tests were performed in 45%, 48% and 46% respectively, and antibiotics instituted in 44%. Twenty-three children (61%) admitted to the emergency department had an orally discussed advanced care plan. No patients died in the emergency department or the intensive care unit. One died at home with support from the team and three in the ward. Discussion: The reduced emergency department visits per patient and the frequent hospitalization needed when recurring reflects the effectiveness of a differentiated multidisciplinary team, domiciliary care and caregiver training. Establishing an advanced care plan and an emergency approach protocol is fundamental for individualized care delivery.

Perceptions of Pancreatic Surgeons and the Current Status of Palliative Care for Pancreatic Cancer in China: A Multi-Center Online Questionnaire Survey

Objective: To investigate the perceptions of pancreatic surgeons regarding palliative care for pancreatic cancer and the current status of palliative care for pancreatic cancer patients in China. Methods: An online questionnaire consisting of thirty-five questions in five domains, including basic information of the respondents, personal interest, training and experiences of palliative care, recognition of the importance of palliative care, palliative care in the hospital of the respondents, and advice to improve the service of palliative care for pancreatic cancer, was distributed to pancreatic surgeons by the WeChat APP. All the data were automatically recorded and can be downloaded. The respondents' perceptions of palliative care and the current status of palliative care were depicted, and the factors influencing the perceptions of the respondents and palliative care in hospitals were further analyzed. Results: Responses from 429 pancreatic surgeons were validated. 81.4% were from tertiary hospitals, and 18.6% were from secondary hospitals. 94.2% were from general hospitals, and 5.8% were from cancer hospitals. Most surgeons have worked for over five years (93%), 72% had senior titles, and 54.5% held administrative positions. 49% have not read papers on palliative care before. 73.4% of the hospitals did not have a palliative care team, 77.9% did not have specific ward or bed for palliative care, 76.2% of the surgeons thought palliative care needed more attention in their hospitals. 97.4% of the surgeons thought palliative care was important for pancreatic cancer patients, and 94.9% were willing to join the palliative team. 46.6% of the surgeons thought palliative care should be conducted once pancreatic cancer was diagnosed. Most surgeons thought palliative care was helpful and should be involved in the multidisciplinary team. Regarding the geographical differences, surgeons and hospitals in North China performed better than in other regions. Surgeons with experience in clinical trials of pancreatic cancer performed better. The top three advice from the surgeons to promote palliative care were more education and training, seminars, and public broadcasting. 69.9% of the surgeons have concerns about the legal issue of implementation of palliative care. Conclusion: In general, the majority of pancreatic surgeons in China lack training and experience in palliative care for pancreatic cancer, and the current status of palliative care in most hospitals needs to be further improved. Prevalence of the participants think that palliative care is very important for pancreatic cancer patients. Palliative care should be provided once pancreatic cancer is diagnosed, and palliative care should be involved in the multidisciplinary team. More seminars, education and training, and public broadcasting are practical ways to improve palliative care for pancreatic cancer patients.

Are specialist-provided end-of-life scenarios key to initiation of advance care planning in primary care? A mixed-methods study.

Specialist-provided end-of-life scenarios (SP-EOLS) may improve advance care planning (ACP) implementation in primary care by helping overcome barriers such as uncertain prognosis and poor interprofessional collaboration. We aimed to explore the current use and potential impact of SP-EOLS on ACP in Dutch primary care. We performed a mixed-methods study. From patients discussed in a hospital-based academic palliative care multidisciplinary team meeting between 2016 and 2019 and died, we collected primary care electronic medical records data on SP-EOLS, actual EOLS, and ACP initiation and applied descriptive and comparative analyses. Subsequently, we interviewed general practitioners (GPs) and thematically analyzed the transcripts. In 69.7% of 66 reviewed patient files, SP-EOLS were found. In patients whose GP had received SP-EOLS, ACP conversations were more often reported (92.0 vs. 61.0%, p = 0.006). From 11 GP interviews, we identified 4 themes: (1) SP-EOLS guide GPs, patients, and relatives when dealing with an uncertain future perspective; (2) SP-EOLS provide continuity of care between primary and secondary/tertiary care; (3) SP-EOLS should be tailored to the individual patient; and (4) SP-EOLS need to be personalized and uniformly transferred to GPs. SP-EOLS may facilitate ACP conversations by GPs. They have the potential to help overcome existing barriers to ACP implementation by providing guidance and supporting interprofessional collaboration. Future research should focus on improving SP-EOLS and tailor them to the needs of all end users, focusing on improving their effect on ACP conversations.

Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson’s disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson’s disease. Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. Setting/Participants: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson’s disease and related disorders conducted at nine sites. Results: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. Conclusions: Clinicians caring for people with Parkinson’s disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

1953 Improving access to community palliative care by raising awareness of services, indications for referral and referral pathways

Abstract Introduction 40% of 1056 patients discharged from our acute geriatrics ward met Gold Standards Framework (GSF) Prognostic Indicator Guidance for Recognition of Patients approaching End of Life (EOL). 92% were not referred to Community Palliative Care (CPC) services, meaning patients’ needs were not fully met and other services over-stretched. This project aimed to achieve a 10% reduction in missed referrals. Methods Highlighting the missed referral rate enabled engagement of key stakeholders including ward and palliative care multidisciplinary teams. This 12-month project comprised four PDSA Cycles: 1. Raising awareness of GSF and CPC through ward-based teaching; 2. Development of posters outlining referral criteria and pathways; 3. Hospital-wide survey of doctors’ understanding of treating patients approaching EOL, with real-time feedback on GSF and CPC; 4. Formal departmental and year-group teaching sessions. The outcome measure was the percentage of patients meeting GSF criteria who were not referred to CPC, as determined by retrospective analysis of discharge letters. Readmission rate was calculated as a marker of quality of life (QoL) and to assess the impact of missed referrals on the Trust. Results Interventions led to a sustained reduction in missed referrals (72% from 92%). Certain diagnoses are more readily referred, metastatic malignancy for example, 9x more frequently than advanced Parkinson’s. Patients meeting criteria averaged 3 admissions in the preceding year (compared to 1.7). Of those meeting criteria and still alive, patients not referred averaged 1 re-admission within 6 months compared to 0.3 when referred. Conclusions Missed CPC referrals impact patient QoL and increase the burden on acute inpatient services. Significant benefits could be seen if these findings are extended to other inpatient wards. There is also a need for education about the palliative stage of non-malignant diseases such as Dementia and Parkinson’s. Future steps include technology-based active screening of inpatients to facilitate referrals.

Nurse and Social Worker Palliative Telecare Team and Quality of Life in Patients With COPD, Heart Failure, or Interstitial Lung Disease

Many patients with chronic obstructive pulmonary disease (COPD), heart failure (HF), and interstitial lung disease (ILD) endure poor quality of life despite conventional therapy. Palliative care approaches may benefit this population prior to end of life. Determine the effect of a nurse and social worker palliative telecare team on quality of life in outpatients with COPD, HF, or ILD compared with usual care. Single-blind, 2-group, multisite randomized clinical trial with accrual between October 27, 2016, and April 2, 2020, in 2 Veterans Administration health care systems (Colorado and Washington), and including community-based outpatient clinics. Outpatients with COPD, HF, or ILD at high risk of hospitalization or death who reported poor quality of life participated. The intervention involved 6 phone calls with a nurse to help with symptom management and 6 phone calls with a social worker to provide psychosocial care. The nurse and social worker met weekly with a study primary care and palliative care physician and as needed, a pulmonologist, and cardiologist. Usual care included an educational handout developed for the study that outlined self-care for COPD, ILD, or HF. Patients in both groups received care at the discretion of their clinicians, which could include care from nurses and social workers, and specialists in cardiology, pulmonology, palliative care, and mental health. The primary outcome was difference in change in quality of life from baseline to 6 months between the intervention and usual care groups (FACT-G score range, 0-100, with higher scores indicating better quality of life, clinically meaningful change ≥4 points). Secondary quality-of-life outcomes at 6 months included disease-specific health status (Clinical COPD Questionnaire; Kansas City Cardiomyopathy Questionnaire-12), depression (Patient Health Questionnaire-8) and anxiety (Generalized Anxiety Disorder-7) symptoms. Among 306 randomized patients (mean [SD] age, 68.9 [7.7] years; 276 male [90.2%], 30 female [9.8%]; 245 White [80.1%]), 177 (57.8%) had COPD, 67 (21.9%) HF, 49 (16%) both COPD and HF, and 13 (4.2%) ILD. Baseline FACT-G scores were similar (intervention, 52.9; usual care, 52.7). FACT-G completion was 76% (intervention, 117 of 154; usual care, 116 of 152) at 6 months for both groups. Mean (SD) length of intervention was 115.1 (33.4) days and included a mean of 10.4 (3.3) intervention calls per patient. In the intervention group, 112 of 154 (73%) patients received the intervention as randomized. At 6 months, mean FACT-G score improved 6.0 points in the intervention group and 1.4 points in the usual care group (difference, 4.6 points [95% CI, 1.8-7.4]; P = .001; standardized mean difference, 0.41). The intervention also improved COPD health status (standardized mean difference, 0.44; P = .04), HF health status (standardized mean difference, 0.41; P = .01), depression (standardized mean difference, -0.50; P < .001), and anxiety (standardized mean difference, -0.51; P < .001) at 6 months. For adults with COPD, HF, or ILD who were at high risk of death and had poor quality of life, a nurse and social worker palliative telecare team produced clinically meaningful improvements in quality of life at 6 months compared with usual care. ClinicalTrials.gov Identifier: NCT02713347.