Palliative Care Program Research Articles

Role of Palliative Care in the Supportive Management of AL Amyloidosis-A Review.

Light chain amyloidosis is a plasma-cell disorder with a poor prognosis. It is a progressive condition, causing worsening pain, disability, and life-limiting complications involving multiple organ systems. The medical regimen can be complex, including chemotherapy or immunotherapy for the disease itself, as well as treatment for pain, gastrointestinal and cardiorespiratory symptoms, and various secondary symptoms. Patients and their families must have a realistic awareness of the illness and of the goals and limitations of treatments in making informed decisions about medical therapy, supportive management, and end-of-life planning. Palliative care services can thus improve patients' quality of life and may even reduce overall treatment costs. Light chain (AL) amyloidosis is a clonal plasma cell disorder characterized by the excessive secretion of light chains by an indolent plasma cell clone that gradually accumulates in vital organs as amyloid fibrils and leads to end-organ damage. With progressive disease, most patients develop diverse clinical symptoms and complications that negatively impact quality of life and increase mortality. Complications include cardiac problems including heart failure, hypotension, pleural effusions, renal involvement including nephrotic syndrome with peripheral edema, gastrointestinal symptoms leading to anorexia and cachexia, complex pain syndromes, and mood disorders. The prognosis of patients with advanced AL amyloidosis is dismal. With such a complex presentation, and high morbidity and mortality rates, there is a critical need for the establishment of a palliative care program in clinical management. This paper provides an evidence-based overview of the integration of palliative care in the clinical management of AL amyloidosis as a means of reducing ER visits, rehospitalizations, and in-hospital mortality. We also discuss potential future collaborative directions in various aspects of clinical care related to AL amyloidosis.

Social support among chronically ill adolescent and young adult patients using a hospital-based online health community as part of a palliative care program: A qualitative study.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs' psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT. This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants. Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs' psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences. SGOT is an impactful OHC used to meet AYAs' social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.

Dying with end stage kidney disease: factors associated with place of death on a palliative care program

Resumo Introdução: Os cuidados de fim de vida em doentescom doença renal terminal (DRT) podem ser desafiantes e necessitar do apoio de uma equipa especializada em cuidados paliativos (ECP). Objetivo: Caracterizar a população de doentes com DRT encaminhada à ECP e avaliar os determinantes para um fim de vida planeado no domicílio. Métodos: Realizámos um estudo de coorte observacional retrospectivo dos doentes com DRT encaminhados à ECP entre janeiro/2014 e dezembro/2021 (n = 60) e caracterizámos aqueles com DRT previamente conhecida relativamente ao local de fim de vida (n = 53). Resultados: A maioria dos pacientes eram mulheres comidade mediana de 84 anos. Metade dos doentes encontrava-se em tratamento conservador, 43% em hemodiálise crónica e os restantes suspenderam diálise iniciada agudamente. Daqueles com DRT previamente conhecida, 18% morreram em casa. Não foi objetivada associação entre género, idade, cognição, status funcional, comorbilidades, etiologia da DRC ou modalidade de tratamento da DRT e o local de óbito. A anúria e a menor sobrevida após suspensão de diálise associaram-se a um fim de vida no hospital e verificámos uma tendência para o fim de vida em casa nos doentes com mais tempo de acompanhamento pela ECP. Conclusão: O fim de vida no domicílio é possível num programa domiciliário de cuidados paliativos, independentemente de idade, sexo, etiologia da DRC, principais comorbilidades e modalidade de tratamento. A anúria e o menor tempo de sobrevida após suspensão da TRS podem ser fatores limitantes. Um acompanhamento mais longo em cuidados paliativos pode favorecer o fim de vida no domicílio.

The perceptions of palliative care medical practitioners towards oral health: A descriptive qualitative study

Background: Oral health problems are common, but often overlooked, among people receiving palliative care. Aim: To better understand how oral health can be addressed in this population, this study aimed to explore the perceptions of oral health care among medical practitioners who provide palliative care to inform the development of a palliative oral health care program. Design: A descriptive qualitative design was adopted. Setting/participants: A single focus group was conducted with 18 medical practitioners at a palliative care facility in Sydney, Australia. All participants had experience providing palliative care services to clients. The focus group was audio recorded, transcribed and thematically analysed. Results: The results from the inductive thematic analysis identified four themes. The themes highlighted that participants were aware of the oral health needs of people receiving palliative care; however, they also reflected on the complexity in delivering oral health care across the healthcare settings, as well as the challenges around cost, lack of appropriate dental referral pathways, time constraints and limited awareness. Participants also provided recommendations to improve the delivery of oral health care to individuals receiving palliative care. Conclusions: To improve the provision of oral health care in this population, this study highlighted the need for oral health training across the multidisciplinary team, standardised screening assessments and referrals, a collective responsibility across the board and exploring the potential for teledentistry to support oral health care provision.

Knowledge and Attitude of Healthcare Providers Regarding Palliative Care and Related Factors: An Online Cross-Sectional Study.

Palliative care alleviates pain and enhances the quality of life of patients with life-threatening illnesses. Training programs are required to provide patients with proper care and advance their health because the expertise of healthcare personnel in palliative care is inadequate. We aimed to assess healthcare professionals' knowledge of palliative carebecause palliative care programs are infrequently used in Syria. An online cross-sectional study was conducted between July 24, 2022, and August 28, 2022, to assess palliative care knowledge and applications among Syrian healthcare workers. The study questionnaire was designed in accordance with a previous study, and the inclusion criteria included Syrian healthcare workers, physicians, and nurses, as well as medical and nursing students. The first section of the questionnaire included sociodemographic information, while the second, third, and fourth sections assessed healthcare workers' experiences, knowledge, and attitudes toward palliative care, respectively. Of the 602 participants, 66.2% of the sample study were females. The majority of the respondents (72.9%) were medical students, with 18.8%residents and 8.3%nurses or nursing students. The majority of the participants (84%) correctly answered the question about pain treatment goals, while only a small percentage (5.3%) correctly answered the question about whether long-term opioid use was addictive. There were no statistically significant differences in the overall knowledge levels across demographic areas, genders, or specialties. Only 14 participants were considered knowledgeable about palliative care. Regarding attitudes toward palliative care, the three responses that received the greatest degree of agreement were "Pain relievers should be given as needed to terminally ill patients" (89.7%)and "Patients have the right to determine their own degree of psychosocial intervention" (81%). Residents in urban and rural areas scored markedly different in their attitudes. Students in their fifth year were 8.06 times more likely to have a positive attitude when compared to those in their first year. Our findings show that Syrian healthcare providers lack knowledge of palliative care. It is important to integrate palliative care into Syria's healthcare system to enhance the quality of life of patients who are approaching the end of their lives and to provide care for those who require it.

Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study

BackgroundFew studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents’ own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs.MethodsQualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis.ResultsThe three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents’ decision-making, and how the onset of their child’s serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one’s own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations).ConclusionsInflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents’ spirituality in an individualized way that responds to the uniqueness of their experiential process.

Whole Person Care in philanthropy - healing & giving

Static reimbursement, rising expenses and decreasing margins for hospice and palliative care programs in the US, limit funding for innovative and creative education, care-giver well-being and resilience efforts and workforce development. Whole Person Care in philanthropy can lead to healing not only of grateful patients, families and friends but can also be a source of healing, connectiveness and meaning for donors, board members, foundations and the community. 
 This presentation will share leadership practices which engage grateful patients, families, prospective donors, board members, foundations and the community to raise significant funds for innovative education and program development. Conversely, the presentation will share innovative education and program development which engages and excites patients, families, donors, board members, foundations and the community to give significant philanthropic gifts. A small but excellent hospice foundation staff (5 people) with the help and support of the clinical leadership team raised over 4 million dollars in 2022 for a community-based hospice serving over 300 patients/day and community-based palliative programs serving over 600 patients/day, both adults and children.

Cost and Utilization Implications of a Health Plan's Home-Based Palliative Care Program.

Background: A California-based health plan offered home-based palliative care (HBPC) to members who needed support at home but did not yet qualify for hospice. Objectives: This study compares hospital and emergency department (ED) utilization and costs and mortality for individuals receiving HBPC to a cohort not receiving palliative care services (Usual Care). Design: This is an observational retrospective study using claims data covering a prestudy period and a study period during which time half of the study population received HBPC services. Setting/Subjects: Seriously ill individuals who received HBPC were matched with those receiving Usual Care using a propensity-based matching algorithm. Intervention: Interdisciplinary teams from home health and hospice agencies provided HBPC services. Measurements: Outcome measures included hospital and ED utilization and cost before and during the study period and mortality during the study period. Results: For both groups, hospital and ED utilization and associated costs were higher during the prestudy period than during the study period. No differences were found in outcome measures between groups during the study period. Average time in the study period was longer for the HBPC group than that in the Usual Care group, indicating that they lived longer or transitioned to hospice later. Conclusion: Although individuals in both groups were living with serious illnesses for which worsening health and increased acute care utilization are expected over time, both groups had reduced acute care utilization and costs during the study period compared with the prestudy period. Reduced utilization and costs were equivalent for both groups.

Specialist Palliative Care Use and End-of-Life Care in Patients With Metastatic Cancer

ContextFor patients with advanced cancer, high intensity treatment at the end of life is measured as a reflection of the quality of care. Use of specialist palliative care has been promoted to improve care quality, but whether its use is associated with decreased treatment intensity on a population-level is unknown. ObjectivesTo determine whether receipt of specialist palliative care use is associated with differences in end-of-life quality metrics in patients with metastatic cancer. MethodsRetrospective propensity-matched cohort of patients age ≥ 65 who died with metastatic cancer in U.S. hospitals with palliative care programs that participated in the National Palliative Care Registry in 2018–2019. Cox proportional hazards regression was used to assess the impact of specialist palliative care on use of chemotherapy in the last 14 days of life, use of intensive care unit (ICU) in the last 30 days of life, use of hospice, and hospice enrollment ≥ three days. ResultsAfter 1:2 matching, our cohort consisted of 15,878 exposed and 31,756 unexposed patients. Receipt of specialist palliative care was associated with a decrease in use of chemotherapy (adjusted hazard ratio (aHR) 0.59 [0.50–0.70]) and ICU at the end of life (aHR 0.86 [0.80–0.92]), and an increase in hospice use (aHR 1.92 [1.85–1.99]) and hospice enrollment for ≥three days (aHR 2.00 [1.93–2.07]). ConclusionOn a population-level, use of specialist palliative care was associated with improved metrics for quality end-of-life care for patients dying with metastatic cancer, underscoring the importance of its integration into cancer care.

Grief Training in Palliative Care Fellowships

IntroductionNo prior study has assessed grief and bereavement curriculum in Hospice and Palliative Medicine (HPM) fellowship programs in the United States. MethodsA 14-item survey was created and distributed to Accreditation Council for Graduate Medical Education (ACGME)-accredited HPM fellowship Program Directors to assess program demographics, curriculum emphasis, grief and bereavement programming, and attitudes toward grief and bereavement training for HPM fellows. ResultsThe overall survey response rate was 63%. Most palliative care programs were academic (74%) and had four or fewer fellows (85%). 90% devoted a minority (0%–10%) of their curriculum to grief and bereavement training. Most programs reported at least some program-led grief and bereavement programming (69%); however, 53% endorsed that fellows are not very or not at all involved in this programming. Almost half of programs only have a small amount of programming related to supporting families after loss (49%). The majority endorsed having a great deal of programming for debriefing or supporting fellows through professional grief (55%), and the most common modalities were debriefing sessions (62%) and ensuring access to mental health resources (41%). The most common ways of teaching grief and bereavement were through bedside/anecdotal teaching and lectures/case conferences. Most program directors felt that palliative care fellowships should provide grief and bereavement training (81%) and consider it important or very important for fellows to learn how to process grief and bereavement (92%). DiscussionIt was widely reported by program directors that grief and bereavement training are important curricular components for HPM fellows. Acknowledging professional grief remains an underrecognized need in palliative care training and practice. Our study suggests that for grief and bereavement curricula in HPM fellowships, the time dedicated, specific types, and amount of fellow involvement was highly variable. It will be critical for programs to disseminate best practices to help move toward a more uniform approach for ensuring basic competency in grief and bereavement training in HPM fellowship programs in the United States.

“We're Onto Something Here!”: Clinician Perspectives of a Pilot Program to Increase Palliative Care Access in an Urban Skilled Nursing Facility

Many adults cycle between the hospital and skilled nursing facilities (SNFs) near the end of life. However, palliative care services, which can provide specialized support for patients with serious illness, are often limited at SNFs. The “3C's Palliative Care Program,” a 5-month pilot, aimed to improve palliative care access for patients admitted to subacute rehabilitation at an SNF affiliated with an urban academic medical center. This manuscript focuses on the pilot's feasibility, acceptability based on SNF clinician feedback from interviews, and lessons learned. The 3C's Program featured primary palliative care skill coaching, virtual palliative care consultations, and continuity via referrals to home-based palliative care at discharge. Ninety percent of SNF clinicians surveyed recommended the continuation of the pilot. SNF clinicians felt the program improved their ability to identify patients for PC consultation, to understand the role and value of palliative care, and to appreciate their patients' illness trajectories. Lessons learned from this pilot suggest SNF–Palliative Care clinician relationship building and simple patient identification mechanisms for palliative care are key to the success of palliative care at SNF integration.

Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children's Hospital.

Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative care evidence is limited. This study describes the development and implementation of a neonatal palliative care program within a neonatal intensive care unit (NICU) at a government hospital, describing the implementing an 8-month pilot palliative care program for neonates, including the patterns of care, and barriers and enablers of success. The hospital-based palliative care team included trained pediatric palliative care physicians, a nurse, and a counselor. There was a steady increase in monthly referrals. There were 110 referrals in total, including 89 (81%) deaths and 18 (16%) babies were alive at the time of final follow-up, 10 months after the pilot program was completed. The program addressed physical symptoms, including providing morphine, as well as psychosocial and spiritual concerns of families. A model of hospital-based palliative care for neonates can be implemented within NICUs in tertiary government hospitals in India. Neonatal palliative care programs should include partnerships with charitable organizations to support implementation costs and provide palliative care training, mentorship, and capacity-building support.

Parental factors affecting their participation in decision-making for neonates with life-threatening conditions: A qualitative study Parents' participation in decision-making.

Parents and healthcare professionals make decisions for neonates with life-threatening conditions (LTCs). Parents may be inadequately included. Limited studies have evaluated influential factors. We aimed to explore parental factors affecting parents' participation in decision-making (DM) for neonates with LTCs. A qualitative study was conducted in four level III neonatal intensive care units (NICUs) in Tehran, and twenty-two in-depth, semi-structured, face-to-face interviews were conducted in 2019. Interviews were transcribed and analyzed using a conventional content analysis approach. During the coding process, participants' words were condensed into meaning units, and 297 open-coded were extracted and then grouped into thirteen subcategories based on similarities and differences. This process was repeated until four main categories were identified. Main categories and subcategories include "parental capabilities" (level of health literacy, emotional state, paradoxical feelings, and perception of the situation), "a sense of parental self-efficacy" (perception of parental role, awareness of self-abilities, and willingness to accept the parental role), "convictions" (religious beliefs and cultural values), and "living conditions" (job balance, household management and caring for siblings, and commuting) were found. Although factors were parental, professionals who care for neonates with LTCs should be trained in family-centered care (FCC) principles to involve parents in DM. Nurses should be aware of parents' abilities and inform them of their rights. Parents' presentation at the bedside prevents their marginalization, reduces feelings of guilt, and helps them understand their baby's behavior and surrounding reality. A formal neonatal palliative care (NPC) program can encourage open communication between professionals and parents. A multidisciplinary team should consider parents' needs and values.

Where are the values in evaluating palliative care? Learning from community-based palliative care provision.

The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. An illuminative case study using a rapid evaluation methodology. Qualitative interviews, documentary analysis and observations of home care and community organising. We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values.

Describing the characteristics and symptom profile of a group of urban patients experiencing socioeconomic inequity and receiving palliative care: a descriptive exploratory analysis.

Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population. To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care. Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention. The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study. Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%). Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity.

The impact of breast surgeon information on women’s breast outcome: evidence from breast conserving therapy

Introduction: With the increase in life expectancy and the development of medical knowledge, the expectation that individuals will live a quality life till the very last days is becoming the norm. Palliative care is an approach that improves the quality of life of patients and their families facing the issues associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, comprehensive assessment and a management plan that considers, physical, psychosocial and spiritual needs. Despite this wholesome definition, the majority of palliative care interventions remain localized and siloed.
 Context: In 2019, the Ministry of Health in Ontario, Canada, announced the Ontario Health Teams (OHTs) as an innovative integrated care network model to deliver integrated person-centred care to Ontarians across their life trajectory (currently there are 54 teams covering 95% of the population). These teams utilize a population health management philosophy to integrate care in a person-centered manner. Integrating palliative care across care sectors and along the trajectory of the palliative care journey is a priority to many of these teams.
 Approach: In the Spring of 2022, Burlington OHT formed a working group to co-design an integrated palliative care model. This working group included patients, caregivers, palliative care physicians and nurses, primary care physicians and nurses, home and community care providers, hospice care providers, policy makers, researchers and evaluators. A participatory experience-based co-design approach was taken to identify the gaps, determine best practices, design a new care model, create an implementation plan, implement, evaluate and improve.
 The participatory experience-based co-design approach was guided by the 11-step methodology described by O'Cathain A, et al in 2019 when co-designing complex health interventions. We added some additional steps. The modified methodology included 1) planning the co-design process, 2) involving all stakeholders (including those who will implement, deliver, use and benefit from the intervention), 3) bring together a team and establish decision-making processes, 4) needs assessment via multiple engagement tools (surveys and virtual and in-person engagement sessions), 5) review published research evidence, 6) draw on existing theories/frameworks, 7) identify relevant change ideas, 8) articulate programme theory, 9) undertake primary data collection, 10) understand the local context, 11) pay attention to future implementation of the intervention in the real world, 12) design and refine the intervention and finally 13) implement and evaluate.
 The project is in its concluding stages and the final findings including the detailed integrated palliative care model description and the implementation plan will be available for the conference in May
 Implications for applicability/transferability: Designing integrated palliative care programs is a novice area of integrated care across the world. Describing the participatory experience-based co-design approach that we followed to plan our intervention has a great potential of guiding policymakers, planners, funders and implementers on how to plan and implement such interventions by facilitating a work together-plan together approach.

Working Together-Planning together. A participatory experience-based co-design approach to build an integrated palliative care model in Ontario, Canada.

Introduction: With the increase in life expectancy and the development of medical knowledge, the expectation that individuals will live a quality life till the very last days is becoming the norm. Palliative care is an approach that improves the quality of life of patients and their families facing the issues associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, comprehensive assessment and a management plan that considers, physical, psychosocial and spiritual needs. Despite this wholesome definition, the majority of palliative care interventions remain localized and siloed.
 Context: In 2019, the Ministry of Health in Ontario, Canada, announced the Ontario Health Teams (OHTs) as an innovative integrated care network model to deliver integrated person-centred care to Ontarians across their life trajectory (currently there are 54 teams covering 95% of the population). These teams utilize a population health management philosophy to integrate care in a person-centered manner. Integrating palliative care across care sectors and along the trajectory of the palliative care journey is a priority to many of these teams.
 Approach: In the Spring of 2022, Burlington OHT formed a working group to co-design an integrated palliative care model. This working group included patients, caregivers, palliative care physicians and nurses, primary care physicians and nurses, home and community care providers, hospice care providers, policy makers, researchers and evaluators. A participatory experience-based co-design approach was taken to identify the gaps, determine best practices, design a new care model, create an implementation plan, implement, evaluate and improve.
 The participatory experience-based co-design approach was guided by the 11-step methodology described by O'Cathain A, et al in 2019 when co-designing complex health interventions. We added some additional steps. The modified methodology included 1) planning the co-design process, 2) involving all stakeholders (including those who will implement, deliver, use and benefit from the intervention), 3) bring together a team and establish decision-making processes, 4) needs assessment via multiple engagement tools (surveys and virtual and in-person engagement sessions), 5) review published research evidence, 6) draw on existing theories/frameworks, 7) identify relevant change ideas, 8) articulate programme theory, 9) undertake primary data collection, 10) understand the local context, 11) pay attention to future implementation of the intervention in the real world, 12) design and refine the intervention and finally 13) implement and evaluate.
 The project is in its concluding stages and the final findings including the detailed integrated palliative care model description and the implementation plan will be available for the conference in May
 Implications for applicability/transferability: Designing integrated palliative care programs is a novice area of integrated care across the world. Describing the participatory experience-based co-design approach that we followed to plan our intervention has a great potential of guiding policymakers, planners, funders and implementers on how to plan and implement such interventions by facilitating a work together-plan together approach.

Realist Evaluation of Home-Based Palliative Care Programme for Non-Cancer Patients

Introduction: Disproportionately higher deaths attributed to non-cancer causes in Singapore highlight the need for palliative beyond those with cancers. The Violet Program (ViP) was developed to provide home-based palliative to non-cancer patients residing in the Eastern region of Singapore. VIP aims to (i) reduce unnecessary acute hospital utilization (ii) improve symptoms management (iii) reduce caregiver burden through caregiver support (iv) honour patient preferences better through integrated care while (v) keeping healthcare cost affordable. It is acknowledge that successful implementation and the long-term sustainability of ViP is contingent on its ability to effectively attract, grow and develop its manpower resources. However, identifying, attracting, developing, and retaining competent and engaged community-based palliative care workforce staff remains a major challenge. The aim of this study is to understand attributes of staff and contextual factors well suited for ViP and factors leading to sustainability of such a workforce
 Methods: This study was conducted in 2 phases according to realist evaluation principles. First, initial programme theories (IPT) related to sustainability of palliative care manpower were developed through a scoping review and semi-structured interviews with those who were involved in the conceptualization of ViP. IPTs were expressed in Context (C) Mechanism (M) and Outcome (O) configurations. Then, IPTs were tested using interviews with healthcare care workers (HCW) who were involved in ViP. Only CMO configurations supported by substantial evidence were elicited and refined. 
 Results: 36 HCW of varied roles were interviewed. At the HCW level, (i) familiarity with palliative care framework (ii) comfort in dealing with death (iii) passion for palliative care field (iv) exposure to palliative care during medical/nursing training and (iv) ability to self-care were found to be important attributes for ViP care team. At the institutional level, (continuous) training and provision of socio-emotional support to staff were found to contribute to retention of staff. Self-efficacy for the required tasks, empathy for affected patients/family, passion-driven motivation and dedication to go the extra mile and strong emotional resilience were found to be the key driving forces behind the sustainability of workforce for ViP for the longer term. 
 Implications: This study illustrated the applicability of using realist evaluation for assessment of context specific insights for the identification of suitable workforce and how to sustain them in the longer term. These insights can potentially be used as selection criteria for recruitment of staff for ViP and points to area for training of staff. 

PALLIATIVE CARE IN RESIDENTIAL CARE HOMES: IMPLEMENTATION CHALLENGES AND EARLY FINDINGS IN THREE CLINICAL TRIALS

Abstract This symposium will describe, compare and contrast three active clinical trials implementing palliative care models for people with dementia in residential care facilities and nursing homes. SPA-LTC is a pragmatic clinical trial in three Canadian provinces, providing training to palliative care teams and a process for triggered palliative care conferences. EMBED-Care, based in the United Kingdom, is testing a digital clinical support tool to improve integrated palliative care for people with dementia using holistic assessment and promoting shared decision-making. UPLIFT-AD is a multi-state U.S. based clinical trial, providing training for in-facility Palliative Care Leads and facilitating specialty palliative care clinician consults for people with moderate to advanced dementia. This symposium provides an opportunity to compare methodologic choices in study design, including intervention design, use of internal (care facility) based resources vs. external supports, and outcome assessment. Presenters will describe implications of these design choices for the implementation of the trial and for longer term sustainability. Implementation experience, including barriers and facilitators to palliative care programs for people with dementia, will be described.

The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities.

Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. The present study's first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.