Key Palliative Care Research Articles

Complexity in palliative care inpatients: Prevalence and relationship with the provision of care—a retrospective study

Context End-of-life palliative care aims to provide comprehensive care and can be marked by somatic, psychosocial, and spiritual distresses, requiring interdisciplinary care. However, interdisciplinary care is costly, and palliative care services, similar to all other medical services, are pressurized to be as cost-effective as possible. Objectives To describe the case complexity of palliative care inpatients, we evaluated possible correlations between complexity and the provision of care and identified complexity subgroups. Methods Patients (N = 222) hospitalized in a specialist palliative care unit in Switzerland were assessed for biopsychosocial complexity using INTERMED. Based on a chart review, INTERMED scores were determined at admission and at the end of hospitalization or at death. Descriptive statistics and Pearson’s correlation coefficients were used to estimate the association between biopsychosocial complexity and the amount and type of care provided. Principal component analysis (PCA) was conducted to explain variance and identify patient subgroups. Results Almost all patients (98.7%) qualified as complex, as indicated by INTERMED. Provision of care was positively correlated (r = 0.23, p = 0.0008) with INTERMED scores upon admission. The change in the INTERMED score during the stay correlated negatively with the provision of care (r = −0.27, p = 0.0001). PCA performed with two factors explained 49% of the total variance and identified two subgroups that differed in the INTERMED psychosocial-item scores. Conclusion Inpatients receiving specialist palliative care showed the highest complexity score of all populations assessed to date using INTERMED. Correlations between biopsychosocial complexity and care provided, and between care and decrease in complexity scores can be considered indicators of care efficiency. Patient subgroups with specific requirements (psychosocial burden) suggested that palliative care teams require specialist palliative care collaborators. Key message Palliative care provision correlates with case complexity and is effective.

Establishing palliative care in tribal and rural Indian setting: A participatory action research approach.

e24085 Background: We established a palliative care center in the tribal area of Santhal Pargana, India, under a tertiary care facility, as a crucial step in addressing the palliative needs of oncology patients. This study assesses the center's inaugural year, focusing on referral patterns, morphine consumption, and pain management. Methods: Data from all patients visiting the palliative care outpatient department (OPD) in 2023 were prospectively collected and analyzed. The study focused on key palliative care indicators, including morphine consumption, patient referrals, and the mean Numeric Rating Scale (NRS) pain score after initial consultation. The PAR approach was utilized to tailor services to the community's needs. Results: The center observed an increase in patient referrals, from 8 new patients in January to 19 by December. The patient demographic primarily comprised individuals with head and neck cancer (43%), followed by breast cancer (28%) and gall bladder cancer (12%), alongside other types such as cervix, sarcomas, lung, and adult hematolymphoid malignancies. Bone metastasis was present in 46 (55.4%) patients at initial presentation. Morphine consumption demonstrated a notable rise, from 840 mg in May to 2860 mg in December, totaling 9800 mg for the year. The mean NRS pain score improved significantly from 6.5 in January to 4.3 post-initial consultation. The center maintained an overall median of 3 consultations per patient, and bereavement support was provided to 13 (15.7%) patients. Conclusions: The integration of the Participatory Action Research approach, specifically the CTC-5, was instrumental in the successful initiation and expansion of palliative care services within the center. The structured training, mentorship, and organizational restructuring, facilitated by the program, were crucial in establishing a modest palliative care infrastructure. This comprehensive approach not only enhanced care delivery but also ensured the sustainability and adaptability of palliative services, effectively addressing the gap in palliative care in rural, tribal settings.

Development of a tool for palliative care needs assessment and intervention: mixed methods research at a Swiss tertiary oncology clinic

Palliative care interventions improve quality-of-life for advanced cancer patients and their caregivers. The frequency and quality of service provision could be improved by a clinical tool that helps oncology professionals to assess unmet needs for palliative care interventions and to structure the interventions delivered. This paper aims to answer the following research question: what do oncology professionals and cancer patients view as important elements in a clinical tool for assessing unmet palliative care needs? Based on the feedback from professionals and patients, we developed and refined an intervention-focused clinical tool for use in cancer care. This study used a prospective convergent mixed methods design and was carried out at a single tertiary hospital in Switzerland. Healthcare professionals participated in focus groups (n=29) and a Delphi survey (n=73). Patients receiving palliative care were interviewed (n=17). Purposive sampling was used to achieve maximal variation in participant response. Inductive content analysis and descriptive statistics were used to analyze focus group discussions, open-ended survey questions and interview data. Descriptive statistics were used for analyzing quantitative survey items and interviewee characteristics. Focus groups and Delphi surveys showed that seven key palliative care interventions were important to oncology professionals. They also valued a tool that could be used by doctors, nurses, or other professionals. Participants did not agree about the best timepoint for assessment. Two versions of a pilot clinical tool were tested in patient interviews. Interviews highlighted the divergent patient needs that must be accommodated in clinical practice. Patients provided confirmation that a clinical tool would be helpful to them. This paper reports on research carried out to understand what elements are most important in a tool that helps oncology professionals to identify patients' unmet needs and provide tailored palliative care interventions. This study demonstrated that professionals and patients alike are interested in a clinical tool. Responses from oncology healthcare professionals helped to identify relevant palliative care interventions, and patients provided constructive input used in designing a tool for use in clinical interactions.

A Systematic Review of Stakeholder Perspectives of Dignity and Assisted Dying.

The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients. Guided by the Systematic Evidence Based Approach, a systematic scoping review (SSR in SEBA) on perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted. The review hinged on the following questions: "what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?", "how is dignity conceptualised by patients with WTHD?" and "what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?" 6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified include 1) concepts of dignity through the lens of the Ring Theory of Personhood (RToP) including their various definitions and descriptions; 2) the relationship between dignity, WTHD and assisted dying with loss of dignity and autonomy foregrounded; 3) stakeholder perspectives for and against assisted dying including those of patient, healthcare provider and lawmaker; and 4) other dignity-conserving measures as alternatives to assisted dying. Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.

Allied health professionals' contribution to care at end of life in aged care settings.

The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health professionals (AHPs) providing palliative care within an aged care context. Understanding the roles and needs of AHPs providing care during the last months of life in the community and aged care facilities could contribute to workforce planning, targeted information and improved care. In total, 108 eSurveys were collected between November 2019 to May 2020 from three allied health professions working in government-funded aged care; the majority of these being in residential aged care. Descriptive data are reported on the provision of care in key palliative care domains, care settings and practice activity. Nearly all respondents reported they had worked with older Australians who had palliative care needs. However, over one-third of respondents reported low levels of confidence in supporting clients or residents with palliative care needs. The majority indicated they would benefit from additional education and training and support in palliative care. This study investigated the role of the allied health workforce in contributing to the care of older Australians at the end of life. It has also demonstrated that there are gaps in practice activity and work role that must be addressed to ensure this workforce can support older people with palliative care needs in receipt of aged care services.

Free-text analysis of general practice out-of-hours (GPOOH) use by people with advanced cancer: an analysis of coded and uncoded free-text data.

People with advanced cancer frequently use the GP out-of-hours (GPOOH) service. Considerable amounts of routine GPOOH data are uncoded. Therefore, these data are omitted from existing healthcare datasets. To conduct a free-text analysis of a GPOOH dataset, to identify reasons for attendance and care delivered through GPOOH to people with advanced cancer. An analysis of a GPOOH healthcare dataset was undertaken. It contained all coded and free- text information for 5749 attendances from a cohort of 2443 people who died from cancer in Tayside, Scotland, from 2013-2015. Random sampling methods selected 575 consultations for free-text analysis. Each consultation was analysed by two independent reviewers to determine the following: assigned presenting complaints; key and additional palliative care symptoms recorded in free text; evidence of anticipatory care planning; and free-text recording of dispensed medications. Inter-rater reliability concordance was established through Kappa testing. More than half of all coded reasons for attendance (n = 293; 51.0%) were 'other' or 'missing'. Free-text analysis demonstrated that nearly half (n = 284; 49.4%) of GPOOH attendances by people with advanced cancer were for pain or palliative care. More than half of GPOOH attendances (n = 325; 56.5%) recorded at least one key or additional palliative care symptom in free text, with the commonest being breathlessness, vomiting, cough, and nausea. Anticipatory care planning was poorly recorded in both coded and uncoded records. Uncoded medications were dispensed in more than one- quarter of GPOOH consultations. GPOOH delivers a substantial amount of pain management and palliative care, much of which is uncoded. Therefore, it is unrecognised and under-reported in existing large healthcare data analyses.

76 HOW BLOGS SUPPORT THE TRANSFER OF KNOWLEDGE INTO PRACTICE IN THE FIELD OF DEMENTIA PALLIATIVE CARE: FACILITATORS AND BARRIERS

Abstract Background Blogging can help to maximise the impact of one’s work in academia and beyond by making research findings accessible for multiple knowledge users. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders’ views of blogs as a means to translate research findings in the field of Dementia Palliative care. Methods A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations. Complete responses (N=128) were received from healthcare researchers (n=53), healthcare providers (n=46) and others with an interest in healthcare research (n=29). Data were analysed using descriptive statistics and content analysis Results The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs “sometimes” (39.1%), with <19% reading them “often” or “very often”. Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. Most respondents (37.7 % ‘Yes’ and 23.0% ‘Maybe’) would read Dementia Palliative care blogs by the research team. Conclusion Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.

How blogs support the transfer of knowledge into practice in the field of dementia palliative care: a survey of facilitators and barriers

BackgroundBlogging can help to maximise the impact of one’s work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders’ views of blogs as a means to translate research findings.MethodsA web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis.ResultsComplete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs “sometimes” (39.1%), with < 19% reading them “often” or “very often”. Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog.ConclusionsDespite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.

Palliative care in Uganda: quantitative descriptive study of key palliative care indicators 2018-2020

BackgroundThe first and most recent nationwide audit of palliative care services in Uganda was conducted in 2009. Since then, Uganda has made great strides in palliative care development, including policy, education, and services implementation. This study provides an overview of the availability of palliative care services in the country and the challenges and gaps in Uganda prior to the global COVID-19 pandemic. This lays the foundation for better understanding the challenges and changes needed to support palliative care development and access in the wake of the pandemic.MethodsWe conducted a descriptive quantitative study of secondary data on nationwide morphine distribution, collated a list of accredited facilities, and analyzed key palliative care indicators collected through the mHealth surveillance project present at a subset of accredited facilities. Descriptive statistical analysis involved non-parametric tests using SPSS, mapping geographical distribution of available palliative care services using Geographic Information Systems software, and identification of challenges from the subset of accredited facilities.ResultsThere were 226 accredited palliative care facilities across Uganda’s 135 districts in 2020. Thirty districts lacked any accredited palliative care facility. The estimated population coverage was 88.5%. The majority (68.1%) of accredited facilities were public, and private facilities received slightly more pain-relieving morphine. There was an alternating trend in the volumes of morphine delivered to public and private facilities. More than a third of the patients were diagnosed with non-communicable diseases, highlighting their significance alongside cancer and HIV/AIDS as conditions requiring palliative care. Palliative care accredited facilities offered six types of services: outreach, home visits, psychosocial, legal, bereavement, and spiritual support, but only for an average of 7 months a year due to lack of facilitation and transportation.ConclusionPalliative care in Uganda developed in quality, volume, and geographic coverage since 2009. The shift in palliative care patients’ primary diagnosis from HIV/AIDS to non-communicable diseases marks an important epidemiologic transition. Although accredited facilities are present in most administrative districts, more research is needed to evaluate the actual accessibility of these services. The existing services, both private and public, are limited by the amount of pain-relieving morphine, financial and transport resources. More quality data collected on key palliative care indicators is needed into geographical accessibility of palliative care services, morphine availability trends, and patient diagnoses in order to improve the provision of palliative care in Uganda.

Seeding a Revolution Post-COVID: Equipping Staff in Long-Term Care to Integrate Palliative Care (FR267)

Outcomes 1. Recognize opportunities in existing long-term care workflows to assess for palliative care or hospice needs and trigger palliative care consultation 2. Describe four key palliative care services that long-term care professionals can be taught and incorporate into their own practice, including timely referral to palliative care or hospice 3. Devise strategies to improve collaborations with long-term care providers in their own communitiesIt is estimated that the majority of people receiving long-term care services have unmet palliative care needs, and for those near the end of life, hospice care remains underused. These disparities were highlighted during the COVID-19 pandemic, and now many long-term care programs and facilities are eager to address the palliative care needs of their patients or residents and avoid unnecessary hospital transfers, but they need to understand this in a way that aligns with their own priorities and operations.Two recent initiatives have provided education, resources, and peer learning to groups of long-term care providers, to expedite the integration of palliative care in long-term care settings. One learning collaborative was led by a local health system aiming to improve outcomes for patients in their community, and one was led by a national organization to improve end-of-life experiences in Programs of All-inclusive Care for the Elderly (PACE) nationwide. Common to both efforts was targeted education, focused on proactively identifying people in need of palliative care and how to incorporate this identification into existing workflows; holding effective goals of care and advance care planning conversations; managing physical and psychosocial symptoms; and facilitating referral to palliative care specialty teams or hospice, as appropriate. Note that creating a strong identification process can be instrumental in ensuring equitable access to palliative care for all populations, especially Black, Indigenous, and other people of color.This session shares the lessons learned from these two initiatives, providing insights for both hospital-based and hospice-based palliative care programs to bolster capabilities as well as timely referrals from the long-term care organizations in their own communities. The session ends with an exercise to help attendees devise their own efforts.

Palliative Care Education: Its Effect on Nurses’ Competency during Care of Dying Patients

Background: Palliative care can play a major role in relieving both physical and mental symptoms of the dying patient. Nurses are the key valuable palliative care team members who are responsible for the dimension of physical, functional, social, and spiritual patients' care. Essential factors affecting a successful implementation of palliative care are nurses' knowledge, attitude and self efficacy for providing care to these patients. Aim of the study: To examine impact of palliative care education on nurses’ competency during care for dying patients. Methods: A quasi-experimental design was utilized. Setting: The study was conducted at oncology institute, general medical and general surgical unit of Menoufia University hospital. Subjects: A convenience sample of 120 nurses (52 from oncology institute, 34 from general medical and 34 general surgical unit) of Menoufia University who agreed to participate in this study were divided alternatively and randomly into two equal groups, 60 for group 1 and 60 for group 2.Tools: four tools were utilized by the researchers. Tool I: Structural interviewing questionnaire, Tool II: Palliative Care Quiz for Nursing, Tool III: The Frommelt Attitudes Toward Care of the Dying scale and Tool IV: The Palliative Care Self-Efficacy Scale. Results: the mean total score of Palliative Care nurses’ knowledge in study group (16.48±1.88)was better than control group (7.23± 2.68), nurses' attitude toward palliative care of study group was 113.50±10.75 as compared to 91.21±12.40of control group and palliative care self-efficacy score of study group was 28.06±7.38 as compared to16.08±4.49 of control group at post-intervention. Conclusion: palliative care educational intervention to nurses can be effective in strengthening their knowledge base, improving attitude and level of self efficacy toward care of dying patient. Recommendations: Education and training programs about palliative care with simple illustrated booklet required for all nursing staff in health care setting

Community-based short-term integrated palliative and supportive care reduces symptom distress for older people with chronic noncancer conditions compared with usual care: A randomised controlled single-blind mixed method trial

BackgroundGlobally, a rising number of people live into advanced age and die with multimorbidity and frailty. Palliative care is advocated as a person-centred approach to reduce health-related suffering and promote quality of life. However, no evidence-based interventions exist to deliver community-based palliative care for this population. AimTo evaluate the impact of the short-term integrated palliative and supportive care intervention for older people living with chronic noncancer conditions and frailty on clinical and economic outcomes and perceptions of care. DesignSingle-blind trial with random block assignment to usual care or the intervention and usual care. The intervention comprised integrated person-centred palliative care delivered by multidisciplinary palliative care teams working with general practitioners and community nurses. Main outcome was change in five key palliative care symptoms from baseline to 12-weeks. Data analysis used intention to treat and complete cases to examine the mean difference in change scores and effect size between the trial arms. Economic evaluation used cost-effectiveness planes and qualitative interviews explored perceptions of the intervention. Setting/participantsFour National Health Service general practices in England with recruitment of patients aged ≥75 years, with moderate to severe frailty, chronic noncancer condition(s) and ≥2 symptoms or concerns, and family caregivers when available. Results50 patients were randomly assigned to receive usual care (n = 26, mean age 86.0 years) or the intervention and usual care (n = 24, mean age 85.3 years), and 26 caregivers (control n = 16, mean age 77.0 years; intervention n = 10, mean age 77.3 years). Participants lived at home (n = 48) or care home (n = 2). Complete case analysis (n = 48) on the main outcome showed reduced symptom distress between the intervention compared with usual care (mean difference -1.20, 95% confidence interval -2.37 to -0.027) and medium effect size (omega squared = 0.071). Symptom distress reduced with decreased costs from the intervention compared with usual care, demonstrating cost-effectiveness. Patient (n = 19) and caregiver (n = 9) interviews generated themes about the intervention of ‘Little things make a big difference’ with optimal management of symptoms and ‘Care beyond medicines’ of psychosocial support to accommodate decline and maintain independence. ConclusionsThis palliative and supportive care intervention is an effective and cost-effective approach to reduce symptom distress for older people severely affected by chronic noncancer conditions. It is a clinically effective way to integrate specialist palliative care with primary and community care for older people with chronic conditions. Further research is indicated to examine its implementation more widely for people at home and in care homes.Trial registration: Controlled-Trials.com ISRCTN 45837097Tweetable abstract: Specialist palliative care integrated with district nurses and GPs is cost-effective to reduce symptom distress for older people severely affected by chronic conditions.

Project ECHO: Enhancing palliative care for primary care occupational therapists and physiotherapists in Ireland.

Project ECHO (Extension for Community Healthcare Outcomes) uses videoconferencing technology to support and train healthcare professionals (HCPs) remotely. A 4-month fortnightly ECHO programme was developed and implemented to enhance palliative care provision by primary care therapists. Teaching and case-based discussions were facilitated by palliative care specialists. A mixed-methods cohort study was used to evaluate the project. ECHO participants completed pre- and post-programme questionnaires regarding their knowledge and skills across key palliative care domains. Focus groups were held before programme commencement to explore participants' attitudes and experiences of palliative care and after programme conclusion to explore their experiences of ECHO. Twenty-six primary care HCPs commenced the ECHO programme. Mean scores in self-rated confidence in knowledge and skill improved significantly(p<.002) following the programme. Twenty-one primary care HCPs completed the post-ECHO surveys and scores of self-rated confidence in knowledge and skills were significantly higher than pre-ECHO scores. Ninety-five percent of participants (n=19) reported ECHO met their learning needs and was an effective format to enhance clinical knowledge. Eighty-five percent of participants (n=17) would recommend ECHO to their colleagues. Project ECHO improved palliative care knowledge and skills of primary care HCPs in Ireland, with potential to address the growing need for integrated palliative care services.

Definitions of Palliative Care Terms: A Consensus-Oriented Decision-Making Process.

Background: Lack of consistency in palliative care language can serve as barriers when designing, delivering, and accessing high-quality palliative care services. Objective: To develop a consensus-driven and evidence-based palliative care glossary for the Health Standards Organization Palliative Care Services National Standard of Canada (CAN/HSO 13001:2020). Design: Content analysis of the Palliative Care Services standard was used to refine a list of terms. Environmental scan and rapid review were used for identification of concepts and definitions. Two meetings of consultation based on the modified Delphi approach took place among a working committee consisting of 12 health care providers, administrators, academics, and patient/family representatives. Results: Palliative approach to care, quality of life, pain and symptom management, caregivers, palliative care, life-limiting illness, and serious illness were defined by modification/adoption of existing definitions. Conclusion: A glossary of key palliative care terms was developed and included in the HSO Palliative Care Services standard, which will facilitate communication using consistent language across care settings.

Can Home Palliative Care services reduce Emergency Department visits? Piedmont Experience, 2013-2018

Abstract Background Home-based Palliative Care (HPC) ensures multi-disciplinary medical, nursing, rehabilitation and psychological assistance for people with severe disabilities or with progressive end-stage disorders like cancer, promoting the continuity of care in home setting. Emergency Department (ED) visits in palliative care patients are considered an indicator of poor quality in home care services, since ED visits in these patients are not essential and potentially avoidable. There is still no agreement in literature about the efficacy of HPC in reducing the use of ED. However, recent studies demonstrated that HPC increases patient satisfaction while reducing use of medical services like ED, symptom burden and medical costs. The objective of this study was to evaluate if patients assisted by HPC have a reduction of ED visits compared to the 90-day period before HPC admission. Methods A retrospective study using the administrative regional database of Piedmont (Italy) was conducted on the cohort of 4433 patients admitted to HPC from 2013 to 2018. ED visits during period A (90-days before HPC) and period B (during HPC) were compared for each patient, taking into account avoidable or unavoidable visits based on triage examination. Results During period A, patients had 2880 ED visits, 1934 were considered avoidable (67%). During period B, 2050 ED visits were recorded, 994 were considered avoidable (48%). Patients receiving HPC had a reduction of overall ED visits (IRR 0.87, IC 95% 0.82-0.92) as well as avoidable ED visits (IRR 0.63, IC 95% 0.58-0.67). Unavoidable ED visits increased during HPC (IRR 1.36, IC 95% 1.24-1.49), as a consequence of disease progression. Conclusions Home-based Palliative Care is associated with a significant reduction of the use of overall Emergency Department visits (-13%) and ED avoidable visits (-37%). Since it reduces medical care costs and burden of patients and caregivers at the end of life, Home-based Palliative Care delivery should be increased. Key messages Home-based Palliative Care is associated with a reduction of the use of overall Emergency Department visits and avoidable ED visits, reducing medical care costs and burden of patients and caregivers. Home-based Palliative Care delivery should be encouraged and increased, aiming to an early enrolment as well as an increase of the patients.

Effect of Short-term Integrated Palliative Care on Patient-Reported Outcomes Among Patients Severely Affected With Long-term Neurological Conditions

Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking. To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs. Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019. Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174). Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat. A total of 350 patients (mean [SD] age 67 [12] years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers. In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted. isrctn.org Identifier: ISRCTN18337380.

Delivering Hospital-Based Pediatric Palliative Care: The Symptoms, Interventions, and Outcomes for Children With Cancer in Bangladesh.

PURPOSEThe majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services.METHODSThis retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics.RESULTSThere were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21).CONCLUSIONA hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.

A Pilot Study of a Mindfulness-Based Art Therapy Intervention in Outpatients With Cancer.

Patients with cancer frequently experience physical and psychological distress that can worsen their quality of life. We assessed the outcomes of an 8-week mindfulness-based art therapy (MBAT) intervention, Walkabout: Looking In, Looking Out, on symptoms, sleep quality, health-related quality of life, sense of coherence (SOC), and spirituality in outpatients with cancer. A 1-group, pre-post intervention design with repeated measures at baseline, week 4, and week 8. Despite a small pilot sample (n = 18), we found large effect sizes and statistically significant improvements from week 1 to week 8 in depression, the comprehensibility subscale of the SOC, and each subscale of spirituality, that is, peace, meaning, and faith. There were no significant changes in physical functioning, pain, sleep, tiredness, drowsiness, nausea, and appetite. The MBAT intervention, Walkabout, seems to meet key palliative care goals including improvement in emotional well-being, comprehensibility, and meaning making among outpatients with cancer.

Evaluation of an NP-based model of palliative care delivery within an oncology clinic.

163 Background: We initiated a nurse practitioner (NP)-based model of palliative care delivery embedded within an oncology clinic guided by a shared mental model (SMM) between palliative care, oncology, and psychosocial oncology clinicians in order to foster best practice collaboration and closed-loop communication between teams. These data represent processes and outcomes three years after initial implementation of the program. Methods: We evaluated program growth as well as advance care planning, hospice use, and utilization in patients with advanced cancer seen by the palliative care NP compared to patients receiving usual care from March 2014 to March 2017 at University-based oncology clinics. We developed a palliative care quality improvement tool integrating administrative and clinical data from multiple sources, including the electronic health record (EHR) and external hospices, using progressive methods of pulling data, such as natural language processing, in order to identify patients with advanced cancer and key process and end of life utilization measures. We used chi square tests to compare care received by the two groups. Results: There was good adoption of the intervention. The number of participating oncologists increased from 2 to 5 and the palliative care NP shifted from part-time to full-time after the first 1.5 years of implementation. Patients enrolled in the NP-based model of palliative care delivery were more likely to have a documented goals of care conversation (74.6% v. 9%, p &lt; 0.01), to be referred for additional psychosocial support (52.5% v. 30.9%, p &lt; 0.01), and to complete physician orders for life sustaining treatment (POLST) (20.3% v. 4.5%, p &lt; 0.01). There was no statistically significant difference in advance directive completion (28.8% v. 23.5%). Among decedents, patients enrolled in the NP-based model were more likely to be enrolled in hospice (50.5% v. 29.1%, p &lt; 0.01). There were non-statistically significant trends toward less hospital (4.6 days v. 5.6 days) and ICU use (1.0 day vs. 1.3 days) in the last 30 days of life. Conclusions: An NP-model of palliative care delivery within an oncology clinic led to important improvements in key palliative care processes and outcomes.

Policy Opportunity: Putting Palliative Care on the Agendas of the New Administration and Congress (FR403)

•Discuss the likely healthcare priorities of the new administration and how palliative care could contribute to those priorities.•Describe the new Congress and the extent to which palliative care could become more of a priority there.•Discuss the latest evidence on existing efforts to promote palliative and hospice care through new demonstration, delivery, and payment models. Although it’s hard to know what the results of the 2016 election will be, one thing is clear: whoever becomes President will have a new administration including new heads of agencies like Health and Human Services (HHS), the Centers for Medicare and Medicaid Services (CMS), the National Institute of Health (NIH), etc. At the same time, there could be changes in who gets elected/re-elected to Congress. In both cases, there will be the opportunities to educate new leaders and their staff on the benefits and need for palliative care for those with serious illness. This presentation will provide an overview of the legislative and regulatory opportunities for palliative care for 2017 going forward. Attendees will get perspective on the new administration’s healthcare priorities along with suggestions on how palliative care could be positioned to help deliver those priorities. In addition, the new Congress will be analyzed and opportunities for current key palliative care legislation, e.g. the Palliative Care and Hospice Education and Training Act (PCHETA), will be reviewed. The presentation will then include an update on the continuing work on new delivery and payment models at CMS and any potential opportunities for palliative care there. Results from the first wave of CMS demonstration models will begin to be available later in 2016 and so these will be reviewed as well. New and alternate payment systems coming out of the Medicare and CHIP Access Reauthorization Act (MACRA) will be also discussed since these will impact how future healthcare quality will be measured and paid for. Participants will gain a better understanding of what the federal policy priorities regarding palliative care are and also how they and their professional associations and coalitions can participate in making them realities.