Conference Agenda

BackgroundCOPD is the global third leading cause of death, with prolonged care needs over time posing a multifaceted public health (PH) challenge.Characterized by its widespread prevalence, significant morbidity and mortality, substantial healthcare costs, this disease significantly burdens patients,through a worsening symptom profile,diminishing quality of life(QoL)and impacting hope.Informal caregivers(ICs),who play a crucial role in supporting patients are equally impacted.This underscores the need to address both patients' and ICs needs for a comprehensive disease management approach.Hope and QoL are understudied in this population, especially among ICs, highlighting the importance of recognizing and addressing these aspects in a holistic COPD management strategy with concomitant implications for PH.ObjectivesThe dynamic experience of hope and the relationship between hope and QoL in dyads of people living with advanced COPD and their ICs are explored over time.DesignA longitudinal multicenter mixed-methods study with a convergent design.In this abstract we highlight the qualitative results.MethodsQualitative data was collected from dyads of advanced COPD patients and their ICs at three hospitals in French-speaking and Italian-speaking Switzerland,at two different time points.ResultsPreliminary findings highlight that deterioration in health status,physical decline and symptom burden are pivotal factors which shift the perception of hope and QoL over time in dyads of COPD patients and ICs.Emotional and practical support provided by family members,friends and healthcare professionals emerges as a key element in maintaining and enhancing hope.Additionally, resilient personality traits such as optimism and stoicism can help dyads with the ability to cope with the illness and maintain a positive outlook for the future.From a public health perspective,understanding the importance of these factors can inform the development of interventions and policies aimed at improving the well-being and strengthening communities to provide care and support and potentially reduce overall healthcare costs.ConclusionThis study provides an important perspective on the dynamics of hope in dyads of people living with COPD and their ICs over time.Understanding sources of hope may inform targeted interventions and support strategies to improve QoL.This knowledge emphasizes the crucial role of dyads relationships in care planning and social support.

Background – Brereton and Ravenhill is a village in Staffordshire. It has been recognised as a compassionate community for over two years, via Brereton Million (BM) (the organising group). During the COVID pandemic the community mobilised support from citizens in a variety of ways. This included residents sitting alongside people who were dying and another group of residents becoming ‘phone buddies’, often for people who were grieving, lonely and isolated.

Objectives – BM continue to have a busy community agenda including a wide range of activities to reduce loneliness and support families. One of its ongoing areas of activity focuses on public health palliative care. For 2023 there were two specific target areas, i) bereavement training for residents and ii) an event to support people ‘getting their affairs in order’. A number of people who supported individuals during COVID have struggled with the impact of deaths in the village and therefore some capacity building in this area was determined as a key priority.

Design – Each year, BM plan activities that relate to their compassionate community status. The aim is to increase the knowledge, skills and confidence of citizens. The team designed a week long programme to raise awareness of activities such as wills, care plans, funeral planning etc and in addition ran some bereavement training for residents.

Methods – The week long event included a range of activities including an information session followed by a series of workshops, local market place of supporting organisations and opportunities to write wills. The bereavement training was designed to provide an insight into grief theory but mostly focused on building confidence around how to support others.

Results – The events were broadly successful, more people got involved over the week, particularly around the opportunity to write a will. Those who attended reported that they were now more aware of the range of formal and informal documents needed to support their advanced care and loved ones after they’ve died. The bereavement training also evaluated well, and a new bereavement support group has been established for the citizens of the village.

Conclusion – The week long event had the right mix of inputs, however promoting the event needs a new approach. For 2024 there will be a ‘festival’ to encourage higher attendance. The bereavement group whilst early days is progressing well and will hopefully support residents in this post COVID era.

Libraries are an essential component of the compassionate communities model. Their role as community hubs, providing a range of cultural, health and social programs, supports the nurturing of community life, with the role of librarians often likened to ad hoc social workers. Despite this, little has been done to engage libraries across the South Western Sydney Local Health District (SWSLHD) in Sydney, Australia, in developing compassionate communities.

This project aimed to build compassionate libraries by first equipping librarians across the SWSLHD with the knowledge and tools to support community members accessing information and resources regarding palliative care, illness, dying, death and bereavement.

A quasi-experimental design was utilised based on a 2020 report by the SWSLHD Palliative Care Service, which found all (6) surveyed council librarians believing education and training about palliative care, life limiting illnesses, death, and bereavement to be beneficial. In response, a pilot 2-hour educational palliative care workshop, incorporating local palliative care services, relevant case studies and the role of libraries in compassionate communities, was delivered to librarians from the local government areas of Camden, Narellan and Oran Park. The workshop was evaluated for changes in knowledge and confidence in supporting community members around death and dying matters among participants through pre-and-post surveys.

Four librarians from the Camden Community Libraries participated in the workshop. Findings included: (1) 100% of librarians strongly agreeing to being able to define palliative care in comparison to 28.6% prior to the workshop, (2) 100% increase in awareness and confidence of accessing information about SWSLHD palliative care services and (3) 66.7% feeling much more confident in having conversations about palliative care and end of life.

This workshop has helped develop the knowledge and skills librarians possess to offer greater support to community members accessing information about palliative care services. The strong engagement observed among librarians in this intervention advocates for further work in this area. The SWSLHD Palliative Care Service aims to extend this intervention to neighbouring libraries across the district and further look at developing and/or tailoring existing library programs to enhance the compassionate communities model.

Background

Population studies indicate that people and communities develop death literacy through personal experience, arts and education programs. A nationally representative study of death literacy and death-related experiences was conducted in Australia in 2019 and 2023. Between 2019 and 2023 there were two significant social and medical events: the COVID-19 pandemic and the introduction of Voluntary Assisted Dying (VAD) laws. This study examines the impact of VAD and COVID-19 on death literacy.

Objectives

Using representative population data from Australia, this presentation examines the association between death literacy and personal experiences with both COVID-19 and the introduction of VAD in Australia.

Design

Quantitative research using a national representative sample.

Methods

The 72-item questionnaire was administered in an online format (via computer, iPad or mobile phone). A descriptive and regression analysis using SPSS 29.0 was carried out to examine the relationship of COVID-19 and VAD-related experiences with scaled mean scores on the death literacy index. Multivariate analysis is planned to control for potential confounding variables.

Results

A total of 1202 people completed the online survey. The 2023 population study revealed an increase in overall death literacy.

295 (24.5%) reported that they had learnt about end-of-life issues, including death, dying, and grief, because of the COVID-19 pandemic. One in twenty people (67) cared for someone dying with COVID-19, while one in ten (135) experienced the death of a close family member or friend due to COVID-19. Two in ten (219) knew someone who died from COVID-19. Around 28% (341) of the participants attended a funeral, while 10% (111) organised a funeral during the pandemic.

Similarly, 303 participants (25.2%) said that they learnt about end-of-life issues because of the introduction of VAD laws in Australia. Nearly 5% (59) reported having a caring role for someone approved for VAD. Ninety participants knew someone planning to use VAD, while 80 knew people who died using VAD.

Participants reporting any form of experience related to the COVID-19 pandemic and VAD had significantly higher death literacy scores (including scores on overall index, scales and subscales) than those who did not.

Conclusion

It has been previously reported that Death Literacy is a concept that develops through personal, work and education experiences. This study provides further insights into the development of death literacy.

Background: The Family Planning Association of Nepal (FPAN), member association of International Planned Parenthood Federation, is a national non-governmental organization specializing in provision of sexual reproductive health and rights (SRHR). FPAN responded to the 3^rd Nov. 2023 earthquake in Jajarkot and West Rukum districts of Nepal with SPRINT project support through provision of essential lifesaving SRH services, especially for the vulnerable and marginalized population residing in remote and hillside earthquake-affected areas. Limited access to family planning, safe-abortion, HIV/ STI, GBV and obstetric care can lead to increase in preventable morbidities and mortalities.

Objective: To assess the effectiveness of the comprehensive SRH services provided to the vulnerable groups, especially indigenous tribal population in the earthquake-affected areas of Jajarkot and West Rukum districts in Nepal.

Design: With the support from the SPRINT project, FPAN implemented the minimum initial service package (MISP) and organized 15 SRH mobile camps in coordination with the local government and stakeholders for a unified response.

Method: Using FPAN DHIS2 for collecting disaggregated service statistics the data was analyzed to identify proportion, trends, and pattern in SRH service utilization.

Results: Till December 2023, FPAN reached 2,300 individuals (1,944 females, 356 males) with a total of 18,820 SRH services. These include 25 persons with disabilities, 1,098 indigenous persons and 77 pregnant and lactating mothers. Major services include, gynecology-7,299 (39%), STI-6,683 (36%), family planning-1,409 (7%), HIV-904 (5%), and obstetrics-285 (2%) services. 10 to 19 years clients constituted 3%, while 20 to 24 years were 9% and above 25 years were 47%. Affected population were mobilized through the community healthcare workers.

Conclusion:

• Mobile camps were designed to prevent and address essential SRH needs including gender-based violence, which are exacerbated during disasters.
• Integrated psychosocial support within the comprehensive SRH services can have profound effects on the affected population.
• Reviewing the programmatic data helps in identifying the unmet needs and re-strategizing the response intervention and advocacy, contributing to improving the overall health outcomes.

Background: To enhance the quality of end-of-life experiences, fostering collaboration among key stakeholders is essential. The participatory art project could serve as a platform for such engagement. Our proposal aims for a relational engagement approach through art, complementing conventional research methodologies, gradually including the entire community and integrating scientific, professional, religious, and artistic perspectives.

Objectives: To examine the impact that art can contribute to society’s attitude toward dying and death, we explored reactions of different professionals after art-based activities as part of the pilot study.

Design: Our study employs participatory action research, following a cyclic process of planning, actions, and observations. The project's core team, comprised of professionals and creatives, collaborated closely. Initially focusing on the core team, we are gradually involving the broader community. A pivotal element for this study was a photographic diptych portraying dying persons before and after death, with the person alive in the first photo, and his post-mortem portrait in the second - both portraits are placed in the same mirror-like, profile pose.

Methods: We identified key stakeholders in end-of-life care, including hospice volunteers, healthcare professionals, and funeral service providers, using a snowball sampling technique. Ad-hoc open-ended questions were used to elicit their reactions to art-based activities. Thematic analysis of open-ended questions was conducted.

Results: A total of 63 participants actively engaged in three professional roundtables and two workshop discussions, consisting of art presentations and discussions on various end-of-life topics. Their feedback was mostly positive, with descriptors like "meaningful" and occasionally "provocative" and "edgy," reflecting the perceived impact of art. Participants found the art inclusive, accessible, and often non-threatening, facilitating introspection, emotional responses, and initiating open discussions. Reflecting on their roles in end-of-life care, they noted personal significance.

Conclusion: Professionals exhibited immediate enthusiasm for art-based activities, reporting mostly positive effects. The potential of art to integrate relationships within the realm of death and dying was shown by our results, indicating its important role in fostering meaningful connections and addressing taboo subjects in the context of end-of-life care.

Idea

“De Kolibrie”, established in 2016, is literally an open house where people facing a chronic illness - as patients or in their immediate environment - can walk in to share their stories with a trained volunteer. They can also take part in a diverse range of activities based on positive health. Our goals are:

- Increasing empowerment

- Improving quality of life

- Increasing their knowledge about their specific challenge

- Supporting people in the acceptance process, coping with grief and loss

- Improving health, grief and death literacy

- Preparing for and learning to cope with the last phase of life and its impact on day-to-day life

We believe it is important that everyone can enjoy “De Kolibrie” regardless of their financial means, so we provide our activities free of charge. Donations and free contributions are the only source of income to support our operation. We are therefore a purely volunteer organisation that receives no structural support. Our team dedicates itself voluntarily day after day for free. By partnering with other organisations we are expanding our impact and strengthening the network of support essential for the well-being of our community.

Implementation

We offer a wide range of activities including

- leif-sessions (leif is the abbreviation of End-of-Life Information Forum): intimate conversations in which individuals, couples or families - supported by leifcounsellors - can discuss, share and record their wishes and concerns around the end of life.

- Sessions around grief counselling that go beyond individual support. Here, on the one hand, we have the set of 6 pre-structured workshops where we provide methodologies and the free groups. By offering group sessions, we try to create a platform where participants can support each other and make connections with others going through similar experiences.

- Where appropriate, we involve family members, friends and neighbours in individual end-of-life support. In this way, we aim to strengthen the support network and try to create a warm environment where no one needs to be alone during this delicate stage of life.

Conclusions

• About 2,700 visits per year
• Approximately unique 310 visitors per year, with our guests being referred by doctors, other local health partners and word-of-mouth
• Positive results on satisfaction surveys

Our numbers prove that initiatives like ours are much needed and add value within local communities.

Background The high standard of care given to the seriously ill and their families has gained importance. Evaluation of the perceived quality of palliative care from the perspectives of care recipients, including patients and family members will lead to palliative care improvement. As far as we know, no previous research has investigated on this issue.

Objectives of this study were to describe the level of quality of end-of-life care as perceived by bereaved family caregivers and to describe needs and problems from the perspective of patients and family caregivers during the end-of-life period at home.

Design Mixed-methods research was employed.

Method For the quantitative method, the samples consisted of bereaved family caregivers, who had received services from palliative care consultative centers at tertiary-level hospitals. Convenience sampling was used to recruit 480 bereaved family caregivers. The informants for the qualitative method were patients at the terminal stage of life and their family caregivers, who were purposively selected from 4 regions of Thailand. There were 60 informants per group. The research instruments consisted of demographic data sheets, quality of end-of-life care questionnaires, and interview guides. Descriptive statistics and content analyses were applied.

Results The mean score of the perceived quality of end-of-life care was of a moderate level (M=4.01, SD=1.18). Among the 9 dimensions of the quality of end-of-life care, accessibility and use of analgesic medications (M=4.43, SD=1.27) had highest mean scores, while lowest mean scores were the dimensions of care during the loss and bereavement period (M=3.01, SD=1.62). Patients and caregivers reported several needs related to patient care at home. They mentioned difficulties in providing care for the dying at home, mainly due to a lack of knowledge and skills and financial problems.

Conclusion This study’s results highlighted that the continuity of care from hospital to home and bereavement care services need to be strengthened. In addition, programs that aim to support family caregivers’ capacities to provide care for end-of-life patients at home as well as social and economic support for patients’ families are strongly recommended.

Conflict of interest : No Conflict of interest

Funding: National Research Council of Thailand

Background

Tattoos are becoming increasingly common. Healing tattoos are defined as those that people obtain to celebrate, challenge, disrupt and/or (re)claim an aspect of themselves and/or of social phenomena. Memorial tattoos are those that honor someone who has died.

Objectives

Our research program has explored healing and memorial tattoos, asking why people get tattoos and the meaning in the process, their design, and bodily placement.

Design

This narrative inquiry with individuals with tattoos included semi-structured interviews and photographs.

Methods

Interviews were audio recorded, transcribed, and analyzed thematically using continuing bonds, posttraumatic growth, and grief literacy as theoretical frameworks.

Results

Sixty-six people participated in interviews. The act of getting a tattoo was experienced as therapeutic: memorial tattoos made people feel connected to the person who had died; healing tattoos assisted in posttraumatic growth by providing an intentional process by which an individual could process stressful events. Both kinds of tattoos challenged social stigmas.

Conclusions

This program of research on tattoos contributes to expanding upon our understanding of continuing bonds, grief literacy, and how to challenge social stigma. Tattoos provide opportunities for health care practitioners to open conversations about clients’ health and social history, and wellbeing.

Background: Post-bereavement surveys are a validated method for understanding care and support experienced by people approaching the end of life, especially if a nationally generalisable sampling frame is used.

Objectives: To describe the use, experiences, and outcomes of end-of-life care in the last three months of life among decedents in England and Wales.

Design: Cross-sectional post-bereavement survey (modified QUALY-Care) using a stratified nationally representative sample of decedents, excluding sudden deaths.

Methods: The survey was disseminated in 2023 by the Office for National Statistics to 3000 adults who had registered a family member’s death 6–10 months prior. Data were analysed using descriptive statistics.

Results: 1179 responded (response rate 39.3%). 61.9% of those who died spent most of their last 3 months at home. 54.7% used an ambulance and 59.0% attended the emergency department once or more. 12.4% spent more than 30 days of their final 90 in hospital. 86.3% had contact with community-based primary care professionals: but 19.3% had no contact with a GP. Specialist palliative care was received by 45.1%, more often by those who died from cancer (83.6%) and less often by those aged 85 or over (38.2%). Only 42.5% had a care coordinator, and 37.6% struggled with accessing care. 17.9% of respondents had been unaware that their relative was dying. For 37.8% of those who died, and 29.6% of the respondents, health care professionals had not discussed death and dying. In the final 3 months of life, 74.7% received care from the respondent and 53.3% from additional family members/friends. Caring often had a financial impact: 48.8% of the respondents in paid employment took paid or unpaid leave or changed their work hours. Disturbed grief was indicated for 15.6% of respondents, more commonly among those with poor care experiences.

Conclusions: Overall, we found that many experience difficulties accessing the care and support needed at the end of life. We found issues with access to and coordination of care and support at the end of life. Lack of resources, compounded by inadequate communication and poor coordination, results in high levels of unmet needs among those at the end of life and distress and increased care burden among their carers. To improve services, health and social care professionals must have sufficient time, skills, and resources to provide end-of-life care, across settings.

Background: Advanced cancer poses multifaceted challenges that extend beyond the physical realm, encompassing psychological, social, and spiritual dimensions. The Filipino culture is characterized by strong familial bonds and deep-rooted faith, which are integral to the coping mechanisms of individuals facing life-threatening illnesses. Understanding how these cultural values influence the acceptance of illness and worry about dying is crucial for providing culturally sensitive and effective palliative and end-of-life care.

Objective: The study aimed to determine the independent associations of acceptance of illness and worry about dying with various sociodemographic & psychological characteristics, family support, and faith factors among advanced cancer patients.

Method: This is a cross-sectional study among 195 advanced cancer patients seen at the Cancer Institute of a major hospital in Metro Manila, Philippines. Participants completed the Functional Assessment of Cancer Therapy (FACT) and Hospital Depression and Anxiety Scale (HADS) questionnaires. Separate univariate analyses using the Chi-square test were performed for acceptance of illness and worry about dying.

Results: The majority (87.2%) of the sample accepted their illness, and many (41.6%) were not worried about dying at all. Having a college education, good emotional support from family, finding strength in one’s faith/spiritual beliefs, and having one’s faith/spiritual beliefs strengthened by difficult times were significantly associated with acceptance of illness. Finding strength in one’s faith/spiritual beliefs and knowing that things will be okay even during difficult times were significantly associated with not worrying about dying.

Conclusion: To our knowledge, this is the first study that examined the association between faith, family support, acceptance of illness, and worry about dying among Filipino advanced cancer patients. The findings can inform healthcare professionals about the importance of incorporating spiritual and family-centered interventions into the care of advanced cancer patients. This may include integrating faith-based support or involving family members in the care process.

Background:

Bereavement support for families is an essential part of palliative care (PC) services. To provide services based on the best available evidence and guidance, an evidence-informed bereavement support pathway and a tailored implementation plan were developed in close collaboration with two Swiss PC services.

Objectives:

To assess PC staff’s (1) self-perceived skills in and quality of family care, (2) self-reported attitudes towards evidence-based practice, and (3) perceptions of the acceptability, appropriateness, and feasibility of an evidence-informed bereavement support pathway prior to its implementation.

Design:

Cross-sectional baseline survey that is part of a mixed-methods study with multiple time points (before, during and after implementation).

Methods:

Data were collected between September and December 2023 from nurses, physicians, chaplains, psychologists, and others working clinically in specialized PC services at two major urban teaching hospitals in German-speaking Switzerland. Of the 62 eligible PC staff, 39 participated (63%). The selection of study endpoints was guided by Proctor’s Conceptual Model of Implementation Research. Acceptability, appropriateness, feasibility, and self-reported attitudes towards evidence-based practice (implementation outcomes) as well as self-perceived skills in and quality of family care (service outcomes) were measured using psychometrically validated rating instruments, and analyzed using non-parametric inferential statistical tests.

Results:

Of the 39 participants, 28 (72%) were nurses and 6 (15%) were physicians. Skills in and quality of family care achieved a median score of at least 75% of their respective instrument range, and the pairwise correlations between them were moderate to strong (Spearman's rho > 0.48; p < 0.01 for all pairs). Acceptability, appropriateness, and feasibility reached a median of at least 69%, and acceptability and appropriateness were positively correlated (Spearman, p < 0.01). Attitudes towards evidence-based practice achieved a median score of 64%, with physicians reporting higher scores than nurses (p < 0.05, Dunn-Bonferroni, Kruskal-Wallis).

Conclusion:

Our findings suggest that PC staff are well prepared and open towards structured bereavement support to families, but potentially more critical of evidence-based care. The actual implementation of the pathway and its success will require careful evaluation.

Objective
Since Japan has the world's longest life expectancy, end-of-life care outside of hospitals is being promoted, and advance care planning (ACP) is becoming more important. However, many patients die in hospital regardless of their desire to die at home. The purpose of this study was to clarify the difficulties in implementing ACP and the factors that inhibit respecting the wishes of the patient, based on the practical experience of visiting nurses who provide home care support.
Design
A qualitative descriptive study
Methods
The participants were 12 visiting nurses who met the inclusion criteria: having at least 3 years of home care nursing experience, experience practicing ACP, nursing for end-of-life care at home, and high interest in ACP. The survey was conducted in October 2022. Data were analyzed by qualitative inductive analysis. The ethics committee of the first author's institution approved the study.
Results
The participants had a mean of 11 years of visiting nursing experience (range, 3-20 years). Two were male and 10 were female. Five categories were generated as challenges faced by home visiting nursing users and their family, and included resistance of users and their family to discussing the end of life. Three categories were generated as challenges faced by visiting nurses themselves, and included difficulties in building a good relationship with patients. Challenges in regional cooperation consisted of five categories, including disagreement in perceptions among stakeholders and difficulties in cooperation among multiple disciplines including hospital doctors. One of the five factors that prevented the realization of wishes for end-of-life care at home was inappropriate care by family members.

Conclusion
Community-wide efforts are needed to implement ACP, because challenging issues were related to users/family, nurses, and regional collaboration. If patients wish to remain at home until the end of their lives, it is important to provide the appropriate support to family caregivers.

There are no conflicts of interest to declare.

Background: Palliative care research is often challenged by a lack of standardised definition and classification of minority ethnic groups. This study encourages a critical examination of the meaningfulness and significance of these classifications in the context of cultural identities and the complexity of the term "minority ethnic group" and implications of its application in research.

Objective: To reflect on the multifaceted dimensions of ethnicity within the palliative care research framework, particularly how individuals self-identify and navigate cultural complexities within the context of life-limiting illnesses including their experiences related to death and dying.

Design: Qualitative study with interviews and observations.

Methods: We recruited 6 patients from minority ethnic groups out of our target sample of 20 from two sites delivering care for people with life-limiting conditions in London.

Results: Preliminary findings revealed challenges in categorising individuals within minority groups, emphasising the complex nature of cultural identities including views on death and end-of-life experiences. As standardised classifications were used, these categories may oversimply and homogenise diverse experiences, potentially overlooking the richness and variability within minority ethnic population. This could become a challenge when exploring dimensions of cultural, religious and spiritual experiences in palliative care particularly concerning perspectives related to death and dying, where self-identification may allow a more comprehensive representation.

Conclusion: This study suggests the need for an approach attuned to cultural considerations in palliative care research and recognises the challenges in recruitment associated with using official government definition and categories. It aims to encourage a reflective examination of the inherent assumptions and limitations associated with employing standardised categories, thereby, encouraging a revaluation of existing frameworks and the potential development of more contextually relevant categories. An absence of distinct boundaries between culture, ethnicity and nationality may hinder the development of effective policies. Recognising the limitations and fluidity of ethnic identity may foster a comprehensive understanding of the palliative care experiences and perspectives on death and dying within ethnic minority communities.

Background

Oficina da Compaixão - OC is a Portuguese, Non Profit Association, founded in 2021, which mission is to develop community care networks that, when sensitized, informed and trained, guarantee compassionate, collaborative, safe and effective care, in the physical, emotional, social and spiritual dimensions, for elderly people and/or with advanced chronic diseases and/or end-of-life condition - EPACDELC, and their families.

Objectives

Compassionate Cascais - CoCa, contributes to promote a culture of Compassionate Community - CoCo among community partners, focusing on Home Support Teams, Informal Caregivers and Volunteers who care for EPACDELC, in the territory of Cascais, 30 Kms from Lisbon.

Design

Cascais has only one community palliative care - PC support team to attend a population of 147.000 that have PC needs*. The players and decision-makers in the Municipality were consulted, to validate the relevance to invest in the area of ​​end-of-life care, preparing the community to complete the available support. From there, priority groups were defined to 2023.

Methods

Based on the New Health Foundation's All With You Method, three axes were defined:

1. Awareness session for people over 65 years

2. Trainning program for home support teams, informal caregivers, and volunteers

3. Care Circles implementation

Results

1. CoCa developed 6 awareness sessions, attended by 145 people over 65, in community and day centers;

2. CoCa provided training sessions about the practice of compassionate care to 32% of the social entities working in home support, reaching 60 professionals and 20 volunteers. There was a significant improvement in knowledge and attitudes, evaluated through a pre/post questionnaire;

3. Where was an increase of people who makes part of the care circles in EPACDELC;

4. Achieving Level I Certification by NHF;

5. Host an event on the theme of CoCo, with 70 presences.

Conclusion

It’s urgent to invest in the quality of support provided so that people live with the least possible suffering and quality of life until their last day. Mainly, because professionals in the social area do not have basic training in PC, there’s an increasing necessity to invest in training. However, the cultural resistance to the issue of death, implies greater investment to achieve attitude changes and behaviors.

On the other hand, despite Cascais having innumerous resources to support EPACDELC, CaCo's intervention is essential to establish contact networks and access to them.

Background: End-of-life care in the UK often takes place in hospitals, contrary to many people’s preference for home care. Hospital care at the end of life is associated with invasive, costly and sometimes futile interventions. Electronic Palliative Care Coordination Systems (EPaCCS) have been introduced to support advance care planning (ACP) and to digitally document and share patients’ end-of-life preferences across health services. Despite their widespread implementation their effectiveness and reach remain unclear.

Objectives: 1) examine EPaCCS utilization patterns; 2) examine the association between social determinants of health and EPaCCS creation and end of life care decision making; 3) compare EPaCCS outcomes and utilisation of health services for individuals with and without EPaCCS records.

Design: A retrospective observational cohort study will be conducted to analyse EPaCCS data from three regions in the UK. EPaCCs data will be linked with longitudinal primary/secondary and community care data in a quasi-experimental analysis to examine end of life care outcomes of those with and without EPaCCS records.

Methods: The data fields within EPaCCS systems will be described, examining their creation and content across three regions (London, Bradford, and Leeds). Social determinants of health (age, gender, ethnicity, and socioeconomic status) will be explored for their association with EPaCCS creation and the completion of ACP elements. Location of death and hospital utilization in the last 90 days of life as well as healthcare utilization costs for patients with and without EPaCCS records will be quantified.

Results: The findings will provide novel public health insights into the characteristics of individuals with an EPaCCS record, their impact on end-of-life decision-making and health service use. The study will present a comprehensive analysis of healthcare outcomes and costs associated with EPaCCS use, offering valuable information and insights for policymakers, health professionals and the public.

Conclusion: Whilst widely endorsed by the NHS, little evidence exists of EPaCCS benefits to patients, their families and society. This study will provide patients, clinicians, policymakers and health commissioners with valuable information into their continued use, where potential changes should be considered to enhance their delivery and implementation, and to what extent issues of inequity exist together with recommendations to ‘level up’ care.

Background: Providing end-of-life care at home is crucial to achieving a peaceful death for dying patients. Understanding the needs and barriers related to providing such care is essential toward improving the quality of care and facilitating care delivery at the home setting. Objectives: This study aimed to describe the needs and barriers of end-of-life care delivered at the home setting in the Thai context. Design: A qualitative descriptive study was conducted. Methods: 17 patient and 43 family caregiver informants were purposively selected from four regions of Thailand. The research instruments included a demographic data form and interview guides. In-depth interviews were used for data collection, and content analysis was applied. Results: The identified domains of end-of-life care delivered at the home setting were: 1) physical care, 2) medication care, 3) psychological care, 4) transferal to the emergency department due to uncontrollable symptoms at the home setting, and 5) comfort care based on cultural beliefs. The two main barriers to this type of care were, 1) a lack of self-confidence in delivering care to the dying loved one, and 2) financial constraints. Patients and their caregivers reported several needs related to home-based care, namely: 1) financial support, 2) ability to deliver the best quality of care, 3) convenient and fast-track services, 4) 24-hour consultation, 5) continuity of care, 6) information related to diseases and treatment plans, 7) caregiver support, and 8) support related to medical equipment and supplies. Conclusions: Our results emphasize the importance of consolidating the continuity of care from hospital to home and enhancing bereavement-care services. Additionally, the implementation of programs that aim to enhance the capacities of family caregivers to provide care for end-of-life patients at home is strongly recommended. Finally, the provision of essential social and economic support for the families of such patients is also a must.

Background: Community-based research conducted in Canada in partnership with Indigenous communities revealed that education for healthcare providers, family members, and community members is crucial for the development of sustainable palliative care services in Indigenous communities. However, there is a lack of culturally relevant education that reflects the physical, cultural, and social care needs of Indigenous communities. To address this gap in knowledge, our Centre partnered with Indigenous communities across Canada to develop educational resources to meet the needs of Indigenous peoples.

Objectives: This poster outlines an educational initiative that aims to enhance the capacity of Indigenous communities to provide palliative care through culturally safer palliative care training for family and community caregivers. This initiative is designed as one step in the larger process of developing comprehensive palliative care services for Indigenous peoples.

Design: The curriculum design process is centred around building authentic, respectful, and collaborative partnerships with Indigenous communities. We prioritize an Indigenous-led and driven approach that recognizes and honours Indigenous Knowledge, worldviews, and guiding principles. The curricula combine wholistic teaching concepts that focus on Indigenous health and balance with the palliative approach to care.

Results: This poster presents a suite of newly created resources developed in partnership with Elders, Knowledge Carriers and Indigenous organizations, scholars and health and social care providers. Four culturally relevant curricula will be presented which have been designed for all levels of community care, including training for registered and unregistered health and social care providers, as well as family and community caregivers. The curricula are grounded in the Indigenous Wellness Framework, which incorporates community’s experiences, culture, values, and beliefs into the education.

Conclusion: Through community-based initiatives, Indigenous communities are developing caregiving models and practices based on individual, family, and community worldviews. This poster presents the process undertaken by our education team to develop culturally safe-r palliative care training for health and social care providers serving Indigenous communities. The training increases Indigenous communities' capacity to provide palliative care.

Background

Rural communities negotiate embedded socio-economic challenges for equitable access to health and palliative care services. These experiences are commonly expressed through ‘deficit discourse’ that can apportion blame and imply a deficiency in individuals or groups. In the last decade there has been increasing interest in utilising strengths-based approaches (SBAs) in research and practice. SBAs, like assets-based and community development approaches, are a fundamental shift toward working “with” communities and encourage a focus beyond simply identifying the problems to uncovering the potential of what can be.

Objectives

This scoping review explores the purpose and contexts in which SBAs have been applied in rural health research. The scoping review further explores the key components, benefits, limitations, and recommendations for future use of SBAs in rural health research to improve the provision of rural palliative care.

Design

Scoping review following the Joanna Briggs Institute methodology and relevant reporting guidelines. Data is presented in a tabular form and narrative summary.

Methods

A comprehensive search of academic databases and grey literature including published and unpublished studies, quality improvement projects, government documents and web pages. Articles were sourced using CINAHL; Medline; PsychINFO; Embase; Emcare; ProQuest Social Science; Rural; Scopus, ProQuest Dissertations and Theses Global; and Google (Australia).

Results

Reviewed articles described the use of SBAs to understand a rural health problem, or to implement a particular intervention or approach in a rural setting. This presentation provides a descriptive analysis of the SBA paradigm including the key components referencing particular methods; models or theories, the reported benefits and limitations, and recommendations for future use in rural palliative care.

Conclusion

Results from this scoping review provide valuable insights to how SBAs have been employed in rural health research and their application to improving palliative care. The review renders the opportunity to learn from the current application of SBAs, where it has succeeded to improve outcomes for rural people, and the gaps that persist in the literature. Given the well-established inequity in rural access to palliative care services, employing SBAs in research is a unique approach to identifying positive aspects of existing palliative care provision that could be strengthened and further developed.

Background

Sexual and gender minority populations (LGBTQ+) may have specific experiences and concerns regarding aging, dying, death, and loss. For example, in Sweden, older LGBTQ+ people have lived in times when their identities were criminalized and pathologized, and experiences from the HIV/AIDS pandemic may influence their concerns about end-of-life (EoL) care. Furthermore, there are few intergenerational LGBTQ+ spaces to exchange experiences and build community. Therefore, researchers and community organizations partnered to develop “DöBra Rainbow Cafés” by and for LGBTQ+ people to engage with EoL-issues. DöBra is a Swedish pun, literally meaning dying well, figuratively meaning awesome.

Objectives

To investigate the development process of the DöBra Rainbow Cafés and experiences of participating in them.

Design

Qualitative action research.

Methods

Six cafés were held in 2022–23 (with 5 community partners and 81 café-attendees). Cafés were developed iteratively. Conversations were facilitated by open-ended questions and arts-based activities. Qualitative data consists of notes from reflective meetings held after each café and follow-up interviews with 26 participants (5 partners, 21 attendees, age 25-87) to date, subject to inductive analysis.

Results

Participants described the cafés as a space to discuss issues related to aging, dying, death, and loss without a need to consider the dominant heteronormative societal discourse. While participants raised some EoL-care related concerns that may be relevant regardless of sexuality or gender identity, they also expressed concerns about not being able to live authentically at the EoL. While older people drew on past experiences to explain this (e.g., being discriminated), younger people referred to increasing negative LGBTQ+ sentiments globally. The iterative café development illustrated the disparate needs of this diverse group. E.g., while the first café was intergenerational and invited anyone across the LGBTQ+ spectrum, community partners noted that lesbian women and transgender people were underrepresented. Therefore, 2 specifically trans-cafés were held and 1 café for older lesbians.

Conclusion

Findings indicate a need for safer spaces where LGBTQ+ people can discuss EoL-related concerns and find social support. Findings may help sensitize EoL-care staff to LGBTQ+ perspectives.

Conflict of interest

The authors report no conflict of interest.

Funding

FORTE: Grant number 2021-01956

Background Thai community culture supports the palliative care service, particularly the Northeastern,strong kinship,respect and grateful for the senior,caring for their well-being. The senior’s health care is supported by family and community, found many Thai blessing ceremonies. Kalasin’s palliative care service(PCS) is a successful case,mutual collaboration for health reliability,relevant to the compassionate communities(CC). Objectives To comparative study PCS for the elderly and their families of Kalasin Municipality(KM)’s CC,with Kerala’s care model. To develop Thailand’s the upper Northeastern’s CC model. To recommend CC development model guideline. Methods Review on public health approach to palliative care,CC,Kerala’s palliative care model and Thailand’s PCS policy. Survey and study KM’s PCS upon 9 CC characteristics;1local health policies 2the vulnerable’s needs 3diversity 4PCS action policy 5various communications 6reconciliation and loss promotion 7easy assessment 8inclusive plan 9spiritual care,and 5 functions of CC charter(CCC);1awareness 2innovations and collectiveness 3action plan 4new alliances 5social change,during 2020-2022. In-depth interview 30 key informants,2 focus group meetings and 3 site visits;KM’s managements and operations, Muang Nam Dum volunteer group,local networks and experts. Synthesis CC model and conclude guideline recommendations. Results KM Volunteer Network(KVN),starting 2018,aligned with 9 characteristics and 5 functions,evident from KM’s Constitution for Healthy(2016),Healthy City policy and annual budget. KVN(KM,health care workers(HCWs) and community) as social service with care and support,funded by community’s resources,communicating via social media,raising awareness of mutual trust,collaboration and reciprocity. Kalasin Compassionate Community Learning Center(KCCLC),the found CC model,managed by steering committee of 3 parties(KM,HCWs and community),controlling safety and quality standard. KCCLC role was as center of knowledge,resource supporting and CC promoting,funded by public and private. The recommendations for transparency and SMART principle governance,cultural-based curriculums and its ecosystem. Conclusion KVN aligned with 9 CC characteristics and 5 CCC functions,enhancing community engagement and awareness about relationship of death and living,relied on mutual trust,collaboration and reciprocity. KCCLC and its governance model should be expanded to Thai upper Northeastern administrations.

Background

As a result of demographic change, chronic and oncological diseases are becoming increasingly important in the context of public health. Palliative care plays a crucial role in maintaining the quality of life of those affected. International guidelines call for access to palliative care not only for the elderly but also for younger people facing severe illness. It is likely that palliative care will become increasingly important for them. Little is known about young adults’ knowledge and perceptions of palliative care.

Objectives and design

This work aims at assessing the knowledge and perceptions of palliative care among young adults’ (age 18-24), with the results serving as a basis for the theoretical development of interventions and campaigns promoting and destigmatising palliative care within this age group. We conducted a systematic review and made use of the “Intervention Mapping” protocol.

Methods

Exclusion and inclusion criteria were developed using the PICOS progress. Literature was researched within Medline (via Pubmed), google scholar and Web of Science. A search string was developed and refined for all three databases. Duplicates were excluded using Mendeley. The literature was independently screened by two researchers. Narrative synthesis was used to answer the main research question. The six steps of the Intervention Mapping Protocol were followed to theoretically develop interventions and campaigns.

Results

Initially, 1,766 papers were found. After the removal of duplicates and screening 60 studies were included. Their study design was mainly cross-sectional (68%). Young adults know of the term palliative care, however, they do not have a nuanced knowledge. They associate palliative care with death and dying and see its relevance at the end of life. They perceive palliative care to be a medical discipline primarily for the elderly. Young adults demand participation within the planning of interventions to destigmatise palliative care. They demand to receive information on digital devices via the internet. Interventions should entail evidence-based methods of behavioral change such as “cooperative learning” or “interpersonal contact”.

Conclusion

Young adults are a crucial peer group in order to destigmatise palliative care and facilitate access to palliative care in the future. Interventions should entail multiple components: Transfer of knowledge, interaction with affected peers and dissemination of information within the digital space.

Background: Every child with a life-threatening or life-limiting illness, along with their families, has the right to receive palliative care. In Sweden, the integration of palliative care into the welfare system is influenced by decentralized healthcare structures, resulting in regional variations in the organization, expertise, and resources of palliative care.

Design: Data were obtained from national register holders. Underlying causes of death were categorized based on diagnosis codes according to ICD-10 for perinatal conditions, cancer and neuromuscular conditions.

Objectives: To contribute to the development of paediatric palliative care by examining its prerequisites at the population level concerning the location of children’s (0–17 years) deaths.

Methods: The research spanned 2013–19, employing descriptive statistics to assess the distribution and variations in the location of death. Multivariable binary logistic regression analyses were conducted to ascertain the impact of associated factors.

Results: Most children died in hospitals (74.7%). Sex and birthplace showed no significant differences in home deaths. There were regional variations in home deaths, with the highest percentage in the Northern region (23.3%). Deaths due to malignancies (39.0%) had a likelihood of occurring at home, for perinatal diagnoses— the incidence of home deaths was relatively low (1.5%).

Conclusion: The scarcity of paediatric deaths has earlier been shown to result in limited home care for children and potential deficiencies in paediatric palliative care infrastructure. Given Sweden’s vast geography, sparse population, and the growing role of eHealth, the study discusses the potential of establishing national or regional consulting teams to ensure equitable access to specialised palliative care for all children, irrespective of their residence. Most children die in hospitals, this does not necessarily reflect the preferences of the child or family.

As the need for increased death literacy (Noonan 2016) increases globally, in tandem with an ageing population in much of the world, both assisted and unassisted deaths are being held to standards of transparency and accountability in terms of quality of life at end of life. The Lancet Commistion report on the Value of Death (2022) offers a framework for considerations that point way forward for discussing and considering the notion of a 'good death', not only for the person at end of life, but also for their familes and friends. End of life doulas, non-medical support workers to the dying and their close, caring networks are uniquely positioned to enhance and improve both individual and community death literacy standards. As educators, advocates and witnesses to the preparations for end of life, active dying and (often) the immediate work of after-death body care, end of life doulas offer a compassionate presence and a well-informed, evidence-based approach to information transfer when discussing rights, options and choices at end of life. Obviously the concept of a 'good' death is highly individualised and deeply personal, and the better-informed and prepared an individual is, the higher the probability that a death that is as close to an individual's wishes as possible will take place. Good planning, which is another aspect of end of life doula work in general terms, is also highly beneficial in ensuring that options for alternate decisions are well in hand, keeping stress and unnecessary anxiety at bay during a time that may otherwise be quite challenging for both the dying and their caregivers. A well-planned end of life, coupled with thorough conversations and time spent with the person both during their end of life and immediately following death, helps avoid complex and traumatic grief for those left after their person's death, and end of life doulas are playing an increasing role in facitliating conversations with families and with communities. Based on original qualitative research with end of life doulas in four countries, the role of end of life doula, the position of death literacy for practitioners, and future directions for the field are considered with a focus on increasing both death and grief literacy in a variety of settings, including hospitals, hospices, and homes. Quotes from semi-structured interviews will be shared, casting an essential light on the work and future potential of this robust and growing international field.

Background

Navigation helps persons get connected to resources they may not know about or have difficulty accessing. Nav-CARE, a navigation program in Canada, has illustrated that navigators can have a positive impact on the well-being of older persons living at home with chronic illness. EU Navigate is a European adaptation of this navigation program, in which both professional and volunteer navigators support persons of older age (>70) who have cancer.

Aim

The aim of this study is to explore motivations for becoming EU navigators and to evaluate the level of preparedness navigators experience after having participated in the EU Navigate training.

Design

Navigators were trained across five key competencies: (1) addressing quality of life concerns, (2) advocating for clients and families, (3) facilitating community connections, (4) promoting active engagement, and (5) supporting using technology. The first navigator trainings have been conducted in Belgium, Ireland, Italy, the Netherlands, Poland and Portugal.

Methods

After completion of training, a survey was conducted about motivations for becoming navigators and preparedness for the role of navigator on the key competencies. Descriptive statistics were conducted.

Results

The survey was completed by 79 navigators in total from all six participating countries. Most often, people were motivated to become navigators because of a desire to help another (48.1%), a wish to develop personal and/or professional skills (16.5%), or because they found the project interesting or important (15.2%). Overall, navigators indicated that they understood what was expected of them regarding each competency (87.0%-96.1%). Moreover, they reported to be confident in their ability to successfully execute each competency as navigators (75.6%-86.7%).

Conclusions

People who have participated in the adapted EU Navigate trainings feel prepared to start working as a navigator. The navigators’ confidence in their role serves as a favorable foundation from which to start navigation.

Funding

EU HORIZON-HLTH-2021-DISEASE-04: 101057361 — EU NAVIGATE

BACKGROUND AND PURPOSE: This study investigated the impact of a national palliative care policy introduced in 2013. The aim was to identify longitudinal trends in place of death for people with cancer in Sweden.

PATIENTS/MATERIAL AND METHODS: A population-level longitudinal trend in place of death study was performed, based on register data of all adults aged 18 or above with a cancer diagnosis as underlying cause of death, in Sweden between 2013-2019. Data were retrieved from registers at the Swedish National Board of Health and Welfare and Statistics Sweden. In addition to a more descriptive overview of place of death (hospital, home, nursing home, and other places), multivariable linear regression analyses were used to analyse trends in place of death and associated soci-demographic factors, and healthcare services and utilisation.

RESULTS AND INTERPRETATION: Dying in hospital was most common (48.7%), followed by nursing home (25.6%) and own home (23.5%), and varied as related to sex, age, marital status, type of cancer, healthcare regions, and care at death in specialised palliative services or not. From 2013 to 2019, the total number of home deaths increased from 21.8% to 24.7%, whereas hospital deaths decreased from 49.2% to 47.1%. For people residing in their own home, there was a downward trend for dying in hospital, while no trend was detected for people residing in nursing homes. The identified trend had cross-regional variations and inconsistencies. The results point to inequity in palliative cancer care, and the need for national governance strategies.

Background

Given their role in community engagement and wellbeing, local government is well positioned to be an active player in supporting Compassionate Communities. This presentation focuses on the development of the Compassionate Bunbury Charter and Toolkit which built on previous work undertaken with this City of Bunbury (in Western Australia) over a number of years. The Compassionate Bunbury Charter is a whole of community responsibility; it contains aspirations that relate to community members, service providers, businesses, organisations, groups and clubs to pursue. It provides a pathway for Bunbury becoming a Compassionate City.

Objectives

Explore how Compassionate City Charters and Toolkits can foster community conversations and civic actions.

Design

Discuss how the Compassionate Bunbury Charter and Toolkit was developed, how it actions the principles of the Ottawa Charter and describe challenges experienced along the way.

Methods

The Charter was informed by community consultations with City of Bunbury Councillors and employees, chaplains, monks, new migrants, carers, retirees, people with life-limiting illnesses and Aboriginal members of the community. We also sought input from the wider community online via the City of Bunbury Community engagement hub and social media. Interviews with subsequently undertaken with community leaders and presentations made at community forums.

Results

The Compassionate Bunbury Charter recognises the role we all can play in fostering community conversations and actions around caring, dying and grieving. Ten themes were identified during community consultations. The Charter is accompanied by a Toolkit which outlines practical actions people can undertake individually and collectively. The Charter has led to a number of people and organisations pledging to take action. Examples of pledges and actions will be shared including the development of the Compassionate Bunbury Mayor award.

Background: Play is every child’s right and important in goal setting for their well-being. Living with palliative care needs challenges the children’s play and leads to play disruption.

Objectives: This study investigated the surrounded environmental factors related to play of children with palliative care needs at inpatient healthcare facilities.

Design: A mixed-methods approach was adopted in this study using Q methodology.

Methods: Q methodology data were collected from children living with palliative care needs (n=27) between the ages of 5 and 11 and from their caregivers (n=39) in two countries, Kuwait and the United Kingdom.

Results: The findings indicated that children preferred being with others to play; though, due to their conditions’ precautions, this was very limited often. Children had relatively little concern for outdoor, videogames and the type of play to engage in. However, arts and crafts play activities were an exception of as they were important. The findings of the study did not indicate significant cultural differences in the collected data.

Conclusion: This research enables understanding some of the children’s play needs that is important to be considered in play goal setting to be incorporated within the inpatient healthcare environments to support children’s participation in play. Suggestions are made to create opportunities for social play and opportunities that match children's play preferences.

Background: Dhaka city's rapid and unplanned urbanization has exacerbated public health challenges, particularly for COPD (Chronic Obstructive Pulmonary Disease) patients in urban slums. Providing palliative care in this context requires specialized skills, community engagement, and an understanding of local resources to alleviate suffering and improve quality of life. Thus, for patients with COPD and their families, there is a crucial need for home-based palliative care as it means the difference between receiving treatment and not receiving it.

Objectives: This study aimed to enhance the quality of life and alleviate suffering among COPD patients in urban slums through tailored palliative care interventions.

Design: Conducted a comprehensive cross-sectional study within Uttara's urban slums under Dhaka North City Corporation (DNCC), targeting COPD patients. Home-based palliative care services were extended to these individuals, employing spirometry to identify and diagnose COPD.

Methods: COPD assessment tool (CAT questionnaire) was used to gather data via oral responses from respondents belonging to 10 urban slums around the capital city Dhaka.

Results: In the study, 130 patients exhibiting chronic respiratory symptoms were primarily selected. Of those 57 were diagnosed with COPD and needed intensive palliative care services. From there, 37 patients were enrolled into the program based on spirometry assessments, identifying them with COPD or Bronchial Asthma.

From the original group a cohort of 7 semi-educated respondents were selected, belonging to 7 different slums, for follow-up interviews with a WHOQOL-BREF questionnaire. It was typical for patients to have several comorbidities. Anxiety, sadness, and depression were the most commonly reported psychological symptoms. Among the intensive intervention group, home-based palliative care had a significant impact on psycho-social and spiritual care, especially for family caregivers and neighbors.

Conclusion: Palliative care delivery by trained professionals at home significantly enhances the quality of life for COPD patients in urban slums. This underscores the need for tailored interventions addressing unique challenges in resource-limited settings. Collaborations with local NGOs and community leaders are vital for sustainable palliative care provision in urban slums. Future efforts should focus on increasing awareness, improving resource allocation, and enhancing community-based support systems.

Introduction

Cancer has been a prevalent cause of death in the world and is considered the second leading cause of deathworldwide, just second to cardiovascular disease (Sudhakar, 2010). In the Philippines, malignant neoplasms, or cancer with approximately 60,000 cases or 10 % from the total of 582, 183 cases of deaths (Philippine Statistics Authority, 2018). Cancer is also considered a national health priority due to its significant implications to individuals, families, communities, and health systems.

Objectives

This study aims to explain the relationship of caregiver burden, anxiety, and depression on the level of quality of life among primary caregivers by their lived experiences.

Design

This research study will utilize an explanatory sequential mixed methods design.

Methods

This is composed of two phases involving quantitative data followed by a subsequent qualitative phase to expand and connect the findings of the quantitative phase. In quantitative phase, the primary caregiver's burden, anxiety, depression, and level of quality of life will be collected through a survey form. While for Qualitative Phase, their lived experiences will also be collected through a semi-structured interview.

In analyzing the data, Statistical Analysis will be employed using Pearson R vs. Spearman rank correlation coefficient which is still subject for assumptions testing for the quantitative phase. Whereas, thematic analysis will be used to analyze the narrations of the primary caregivers' lived experiences.

Finally, integration technique of connecting and developing joint analysis will also be employed prior to the second phase of data collection. This integration technique will be used from the quantitative phase to inform and link to subsequent data collection for the qualitative phase. Mixed-method meta-inferences will also be drawn to show if the results from the quantitative phase are confirmed, discordant, or expanded from the themes created from the qualitative phase.

Background: Home-based palliative care nursing has been critiqued for its focus on biomedical parameters, such as pain or end-of-life symptom management. This focus tends to maintain nursing practice at odds with patient aspirations, thus limiting their ability to live life to the fullest until death. Despite this clinical focus, the aim of nursing discipline and practice revolves around health throughout all stages of life. Thus, the connection between palliative care nursing and health-oriented practices needs to be contemplated to support its development from a nursing perspective.

Objectives: The purpose of this presentation is to describe mechanisms of health-oriented nursing practice in home-based palliative care so that dying people can live the life they value until death.

Design: An iterative methodology combining theoretical and empirical work was conducted, in coherence with a pragmatic constructivist epistemology and a systemic model of nursing practice. The theoretical component is based on Amartya Sen's capability approach. Capabilities are defined by Sen as the set of effective freedoms people possess to live the life they have reason to value. Based on Sen's ideas, we proposed that health-oriented nursing practice in home-based palliative care can be conceptualized as the conversion process of resources into health capabilities. This idea was explored with the empirical component of this project. A descriptive-interpretive qualitative design was conducted. First, three stories were co-constructed with nurses working in home-based palliative care. A fourth story recounted the author’s emerging reflections in relation to his own clinical and research practice. Those four stories were analyzed with an analytical questioning process to describe mechanisms of health-oriented nursing practice.

Results: Four nursing mechanisms that tend to create capabilities for dying people to live the life they value until death were described: 1) navigating between a life valued and norms, 2) seeing a dying person as both capable and vulnerable; 3) reflexively engaging with one’s practice, and 4) being creatively present.

Conclusion: These findings suggest that home-based palliative care nursing engages reflexivity, reciprocity, and creativity in relation to the dying person. For the discipline of nursing, a capability lens reveals how nursing practice can engage with the lives valued by dying people, until their death.

Background: Kidney Supportive Care (KSC) is an important part of healthcare for patients living with chronic kidney disease. International studies show a benefit in symptom management, Advance Care Planning, family support and death preparation. KSC is well established in Australia. Most palliative care clinics operate as an extra layer of care rather than an alternative to nephrology services. They provide multidisciplinary support to patients on kidney replacement pathways, including those awaiting transplantation as well as patients for whom conservative kidney care is most appropriate. In Australia, specialist KSC services have operated for around two decades, and patient related outcomes including improved quality of life and increased survival have been demonstrated. By avoiding dialysis that may not have been delivering better patient outcomes, healthcare costs can be reduced to a large extent. Such a standardized program does not yet exist in Switzerland.

Objectives: To show the different stages of integration of palliative care in a medical speciality such as Nephrology by comparing one Australian model of care and the situation in Switzerland.

Design: Descriptive study

Methods: Case-oriented, mainly qualitative comparative method between the KSC care model of an Australian institution and the situation in Switzerland.

Results: In Australia, palliative care is already successfully involved as an accompanying discipline within the KSC. The latest data of how KSC can influence symptom management, Advance Care Planning, Family Support, Patient and Family Education, Lifestyle and Bereavement Support and above all how economically successful it can be will be presented at the congress.

Conclusion: Internationally, the integration of palliative care in specialist medical disciplines is already much further advanced than in Switzerland. KSC is not only a success on a personal level but also economically and should therefore be introduced here in Switzerland.

Background: In the aftermath of stroke, survivors experience multiple non-death losses that alter numerous aspects of their lives not limited to decreased functional capacity, restricted mobility, identity uncertainty and relational discord. During rehabilitation, they navigate through these losses and endeavour to move forward with life despite their debilitating impacts. However, the psychosocial processes that survivors adopt for coming to terms with and rising above their losses during this challenging period are yet to be understood.

Objectives: This overview of systematic review critically consolidates and appraise the psychosocial recovery needs of stroke survivors and proposes the development of a trajectory that encapsulates their journey from illness to rehabilitation.

Design: This overview adhered to the PRISMA guideline and employed the PICo (population, phenomena of interest, context) framework to screen for relevant systematic reviews for analysis.

Methods: Six major databases were searched, including Academic Search Premier, CINAHL, Global Health, Medline, PsychArticles, and PsychINFO between 2010 and 2020. The literature search identified 1302 articles. Of these, 52 articles were selected for full-text screening and reviewed for methodological quality leaving a total of 18 SRs for data analyses using thematic synthesis.

Results: Data synthesis revealed 18 themes that were further organized into six conceptual categories: (1) The unfamiliar body (2) Compassionate healthcare system, (3) Holistic rehabilitation, (4) Intrapersonal strength, (5) Interpersonal relations, and (6) Thriving forward. The research process allowed for the development of the Psychosocial Rehabilitation Trajectory of Stroke Survivors (PReTS) model that recognizes the multiple stroke-related losses and emphasizes the essentiality of addressing psycho-socio-emotional and spiritual needs alongside physical impairments.

Conclusion: Aside from physical recovery, current rehabilitation practices have yet to address the psychosocial impact of stroke. The PReTS model highlights survivors’ losses, recovery journeys and most specifically, their psychosocial needs, and serves to inform and advance holistic and wellness recovery research.

Background: Advance care planning (ACP) is the process of helping adults understand and share their personal values, life goals, and preferences for medical care, anticipating future decisional incapacity and documenting their preferences in advance directive (AD). While much research has been done on AD holders' medical preferences, few studies have considered non-medical preferences or have examined the preferences related to other engagement levels in the ACP process (e.g., discussing preferences without making an AD).

Objective: To examine the relationship between individuals’ engagement in the ACP process and the importance attached to different medical and non-medical end-of-life (EOL) aspects in a representative sample of the Swiss population aged 55+.

Method: Swiss respondents (n=2063) to the Survey on Health, Aging, and Retirement in Europe (SHARE) rated in 2016 the importance of 23 EOL aspects (0=‘not important’ or ‘not so important’ and 1=‘important’ or ‘very important’). Respondents were also asked whether they discussed their EOL wishes (0=‘no’ and 1=‘yes’) and had an AD (0=‘no’ and 1=‘yes’). Engagement in the ACP process was derived from these two last variables (1=neither discussed nor made an AD, 2=only discussed, 3=only made an AD, 4=discussed and made an AD). Associations were examined using multivariable logistic regression models, controlling for sociodemographic, regional and health covariates.

Results: Overall, 44% of participants have neither discussed their EOL wishes nor written an AD, while 32% have only discussed their EOL wishes without writing an AD, and 6% have only written an AD but not discussed their EOL wishes. Only 18% discussed their EOL wishes and wrote an AD. Most participants consider many different EOL aspects important, with significant variations across their engagement in the ACP process. Specifically, participants who discussed their EOL wishes and/or have an AD were more likely to find it important to prepare for the EOL and decide on related aspects. Further, among respondents who discussed their EOL wishes, those without an AD were more likely to find psychosocial aspects important than those with an AD.

Conclusion: Engagement in the ACP process correlates with the importance attached to some EOL aspects. Our results further suggest that better highlighting the non-medical aspects included in ACP could motivate a greater number of individuals to actively prepare for their EOL.

Background: Many regions of the world suffer from insufficient access to essential opioid medicines for pain relief and palliative care. Concurrently, however, opioid-related harms contribute to significant global morbidity and mortality. To address these parallel issues, there is a need for a theory-informed synthesis of opioid policy evidence that explores the mechanisms through which policies impact both opioid access and safe use.

Objectives: To delineate the range of policies that influence access to and/or safe use of opioid medicines; to map the components and characteristics of these opioid policies and categorize them according to their mechanisms of action; to produce a conceptual framework that outlines the various policy mechanisms available for governing access to and safe use of opioids.

Design: We will conduct a scoping review of the academic and grey literature based on guidance from the Joanna Briggs Institute. The guiding question for this review is, “What are the policy mechanisms that are used by policymakers to govern access to and safe use of opioid medicines at an international, national, and regional level?”

Methods: We will develop a logic model to guide the review by adapting a published template with relevant concepts and frameworks from the fields of public policy and program evaluation. We will conduct a single search using terms related to ‘opioid medicines’ and ‘policy’. Eligible records will describe one or more policies that govern the selection, procurement, distribution, or use of opioid medicines. We will code all eligible records to develop a typology of opioid policy components and characteristics using a “best fit” framework synthesis, with our logic model serving as the initial coding framework.

Results: Outputs from this review will include a categorized list of opioid policy evidence, as well as themes relating to the main components and characteristics of opioid policies. These themes will be used to create a framework of opioid policies based on mechanisms of action, components and resources of associated programs, policy aims, target populations, and relevant pharmaceutical system dimensions.

Conclusion: This review will provide a summary of opioid policy evidence across various settings and will highlight current gaps in research. It also will produce a conceptual framework of opioid policies that can be used for guiding subsequent systematic reviews and qualitative evidence syntheses of opioid policy research.

Background

Advance care planning (ACP) is a term introduced in the literature in the 1990s describing a range of interventions involving discussions between patients, families and health care providers about future medical care. The process often leads to decisions about life-sustaining therapies, resuscitation and nomination of a medical proxy. ACP has improved end of life care due to the shared decision making process and patient-centred care. The aim of this study was to determine factors that influence patients to engage in advance care planning.

Methods

A literature review was conducted in a systematic manner over a 12 month period. A literature search was conducted on three databases: PubMED, CINAHL and EBSCO using key words “advance directives”, “advance planning”, “living will”, “medical proxy”, “durable power of attorney”, “terminal illness”, “life limiting illness”, “palliative care”, “end of life”. The search yielded 2,005,965 papers. The search was limited to English language, adult subjects (18 years and above) and years of publication from 1975 to 2018. 437 abstracts were reviewed. 19 met the inclusion criteria for this review. 15 had used qualitative methods and 4 quantitative methods. After critical appraisal 14 studies were selected for review.

Results

Data was analysed using a thematic approach. Emerging themes were family involvement, attitudes towards death, spirituality, age, race, gender, past experiences of illness ,prognosis , personal dignity and level of education. Patients who were likely to engage in ACP were those with strong family involvement, those who were ready to face their mortality, were religious, female and older adults.

Conclusion

ACP is a useful tool in end of life planning though it is not widely used. Research in this area also remains limited. Some areas of future research include primary studies on the influence of culture on ACP, existing policies on ACP as well as knowledge and attitudes of healthcare providers.

Lessons learnt

Many cultures are family oriented, therefore patients prefer to have discussions about their wishes as opposed to having written advance directives. ACP should therefore focus on the process of discussion and understanding wishes rather than documentation of wishes.

Background:

In 1991 a Hospice Movement was founded as a charity in a German University City. The aim of this charity is to promote the hospice movement in the public. With the support of volunteers it helps to accompany very sick and dying people and to support families in their care and bereavement.

Over the years different projects and changes to services (individual counselling, walking group, dancing group, gatherings at death cafes, discussion group for young widowed women and men, etc.) have been developed. Co-operations with different institutions and services have been built. A special service has been established to support grieving children, adolescents and young adults.

Objectives:

The obligations of a hospice movement are to accompany all people in their dying and bereavement. A new challenge is how to include our migrant population as society rapidly changes. The existing volunteers need to be trained about diversity and discrimination. A further step is to involve those who have a migration experience themselves as volunteers.

Design:

This project ‘At the End Diversity’ financed since 2022, helps to support diversity in the hospice movement. It aims to establish a network of care and accompaniment for people by volunteers including those with migration experience. This results in establishing connections between all involved to facilitate more access to hospice care.

Methods:

To evaluate how people with migration experience can participate as volunteers and engage in the hospice movement to enhance diversity.

Results:

Advice centres, neighbourhood offices, language mediation centres, migrant self-organizations and hospice/palliative care services have been established.

This requires openness to face an unfamiliar reality. This open mind approach of care helps to meet the new and greater needs of our more diverse everchanging society. It needs flexibility of all people involved. It enhances resilience and seeks to discover underused or not all used human resources.

Conclusion:

It is a challenging experience to gain insight how suffering is integrated, faced and responded to by migrant people with different ethnic, linguistic and spiritual cultures. If it is respectfully done in an openminded non-judgemental way, it enriches all involved in the hospice movement. If this project is successful it will be established as a new regular hospice service.

Background: Since 2019, a dedicated collaboration involving colleagues from a Queensland tertiary paediatric hospital, clinicans from a state-wide, specialist paediatric palliative care service, educators from a nationally-funded palliative care education program, children's hospital charity partners, community servics from across health, education and social services, families and communities with lived experience of grieving the death of a loved one as well as the inclusion of young peoples' voices, who are supported to share their perspectives, have all worked together, whilst drawing upon their respective creative and practical energies to deliver an annual education event. This yearly educational opportunity has delivered an enduring and robust conversation about young people's grief.

Objectives: This free virtual event is intended to build community capacity and practical awareness of what to do when a young person experiences the death of a significant person in their life. The educational forum invites all to participate in the conversation, thereby encouraging a broad community response now, and into the future. 

Design: The forum asserts that through an alliance of head, heart and hand, the community can be equipped to engage in conversationa about grief, and especially, when considering the needs of young people. Participants are behoved to embrace the trilogy of feelings, knowledge and actions when responding to the needs of bereaved young people. Featuring contemporary theories of grief and loss related specifically to young people, coupled with showcasing community supports, and then delivered alongside those with lived experience, a robust and comprehensive conversation about young people’s grief has endured.

Methods: The yearly educational offering, delivered as a webinar, have focused upon wide-ranging topics, driven by the feedback of previous year's event attendees.  Registrants are encouraged to complete pre- and post- webinar feedback via SurveyMonkey. Coupled with learnings derived from hosting educational events, and with the continued support of a committed funding body, the session has been virtually delivered with support from a professional webinar provider.

Results: Attendence grows, as well as reported positive impacts, and greater capacity and preparedness to support grieving young people.  

Conclusion: This presentation will share what has been learned by event organisers in ensuring grieving young people are supported by community.

Background: Cancer is a chronic illness needing long treatment. This includes late toxicity management in case of cure and palliative care if cure is a distant possibility. Northeast part of India shares international border with Bangladesh and both sides had witnessed geopolitical uncertainty since India’s independence in 1947. Unrest and military rule in East Pakistan made the citizens to flee to India which continued even after the creation of the new country Bangladesh in 1971. However, the poor migrants are not eligible under the public health scheme due to lack of proof of citizenship.

Objective: The study objective is to bring out the cause and issue of missing cancer care in displaced community and find possible mitigation strategies.

Design: This is a prospective analytical study evaluating health schemes and law of the land.

Methods: We have analyzed the public health scheme and issues of migrants in Northeast India after observing discontinuity in care. Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB PM-JAY) is a national public health insurance scheme of the Government of India that aims to provide free access to health insurance coverage for low-income earners in the country. The scheme is applicable to Indian citizens. In 2019 Government of India passed the Citizenship Amendment Act (CAA) to provide Indian citizenship to the illegal migrants who entered India on or before 31st December 2014. However, the exercise to identify migrants as per the Act is a tedious process and not yet over.

Results: Until the exercise of granting citizenship under the Citizenship Amendment Act is done, the poor migrants who have no proof of citizenship cannot take benefit under AB PM-JAY scheme. Unfortunately, some internally displaced Indian citizens are lacking proof of citizenship and many of them are suffering from chronic illnesses and cancer, however neither afford to pay for treatment nor eligible to get free treatment under AB PM-JAY scheme.

Conclusions: Northeast India migrant issue is a special situation where poor migrants from other country and some displaced poor Indians are not eligible to get cancer care under public health insurance scheme. The Citizenship Amendment Act provides a solution by granting citizenship. However, the tedious process is taking long time and no solution being offered in the interim period.

Background: In the United States (U.S.), the rising use of home health care (HHC) services among people with multiple chronic conditions highlights a need for home-based palliative care (PC). However, only 7% of such programs in the U.S. are operated by HHC agencies. Integrating PC into the HHC setting could improve patient outcomes. Prior to integration, better understanding of clinician readiness for and patient/caregiver receptiveness of PC are needed.

Objectives: Develop 2 questionnaires to assess readiness for and receptiveness of PC among U.S. HHC clinicians’ and patients/caregivers, focusing on knowledge, attitudes, and confidence (KAC).

Design: A cross-sectional pilot study guided by the 2018 National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care.

Methods: We adapted existing PC-related KAC scales and added new items to cover all eight NCP Guideline domains. Following expert review and 20 cognitive interviews, we refined the questionnaires. The final versions have 3 sections assessing KAC with 56 items for patients/caregivers and 95 for clinicians, including core and role-specific items. After IRB approval, pilot testing was conducted at a large, urban U.S. HHC agency. Descriptive statistics were calculated using Stata 17.

Results: 28 patients/caregivers and 30 clinicians (nurses, physical therapists, social workers) participated. Overall, 48.4% of patients/caregivers were unaware of PC. However, 31.3% of caregivers indicated they had some knowledge. Among patients/caregivers, knowledge gaps existed regarding pain management/opioid use, spiritual/cultural aspects of PC, and end-of-life (EOL) decision-making. Attitudes on pain management/opioid use varied. Caregivers were less confident in managing difficulty breathing and agitation, engaging in EOL discussions or providing EOL care. But 93.6% would consider PC for themselves or a loved one.

Overall, clinicians demonstrated adequate knowledge; however, several questions about pain management/opioid use and ethical/legal aspects of PC were answered incorrectly by >40% of clinicians. Clinicians held positive attitudes towards PC but had varying levels of confidence in PC provision.

Conclusion: We developed 2 PC-related KAC questionnaires for the U.S. HHC setting, laying the groundwork for PC integration. Broader questionnaire distribution will identify training needs and findings will enable tailored interventions for HHC patients, caregivers and clinicians.

Introduction:Distress is very common in patients with cancer but it often goes unidentified. Sociodemographic, clinical, and psychosocial variables have been identified as major risk factors for distress and it extends along a continuum, ranging from common feelings of vulnerability, sadness, and alarming to problems that can become disabling.Objectives:To determine the level of distress among cancer patients and sociodemographic factors affecting distress among the cancer patients. Materials & Methods: The study was a cross sectional study using purposive sampling technique. All the patients above 18 years who were admitted from 1^st March 2021 to 31^st August 2021 were included in the study.The information was collected from patients using NCCN Distress Thermometer (DT) and problem checklist, a validated tool to assess the distress levels and their association of distress with problems. The data was compiled and statistically analysed using Statistical package for social sciences (SPSS Software 23.0 version) IBM Chicago. Results: out of 567 participants, 64.6% study subjects were above 50 years. This shows that the number of patients were increasing with increasing age. In all, 60.5 % were females and 39.5% were males. Majority of patients were having moderate to severe distress (50.6%) followed by 37.9% who had mild stress and 11.5% had no stress.It was observed that education, occupation and socio-economic status were significantly associated with the level of distress while age, sex and marital status had no association. Conclusion:Holistic approach in cancer treatment including psychological, spiritual and emotional evaluation and its solution for the same at appropriate time enhances the quality of life of the patients. It is recommended that all health care providers should address these as a part of their routine practice.

Background Australia has an aging population. Of approximately 160,000 deaths annually, 82% occur in people aged ≥65 years. In the last year of life, South Australians have many hospital admissions. Most die there, often having costly, difficult medical treatments that do not improve their lives. Palliative care can reduce admissions, interventions, costs, and improve quality of living and dying for patients and families facing life-threatening illnesses. However, despite inequities in access to high-quality palliative care (e.g., rural, disadvantaged, or from non-English speaking backgrounds), we know little about what healthcare these groups of people need or get as they approach death, and whether this differs from mainstream, dominant populations.

Objectives To identify a) the unmet needs and care received for acute care populations ≥55 years in South Australia assessed as being in, or close to, the last 12 months of life; b) differences in needs and care according to sociodemographic and disease-related factors.

Design Cross-sectional case-note audit/survey.

Methods Data were collected via an online portal in March-June 2024, within 6 urban and 4 rural public hospitals over 2 consecutive days each. With consent we audited hospital case-notes for the preceding 12-months for in-patients aged ≥55 years. For those identified with deteriorating health and increasing healthcare needs, we documented why they attended hospital, treatment limitations, number of admissions, and any medication review. Using a modified Distress Thermometer, we surveyed participants about their current psychosocial concerns, level of distress, unmet needs, and their awareness of palliative care services. We will review records in 12 months to determine subsequent hospital admissions and mortality status.

Results We report on 1. the current care, treatment limitations, and hospital admissions; 2. distress levels, psychosocial concerns, unmet need, and awareness of palliative care; and, 3. variation associated with socio-demographic, geographic, or clinical (excluding mortality) factors.

Conclusion We present preliminary recommendations for healthcare clinicians, managers, and policy-makers about participant needs and concerns, and, by identifying variation across population groups, facilitate future planning for the healthcare workforce needed to meet the needs of an aging population and deliver care people want and need, regardless of diagnosis, who they are, and where they live.

Background

Holistic care requires medical teams who can address the human spirit. Medical training overlooks physicians’ care for their own human spirit, making it challenging to be present to patients’ spiritual distress or make appropriate chaplaincy referrals. Chaplains often work on the margins, not emboldened to share humanist or spiritual insights in such a medicalized world, even when such insights are crucial to the care plan. The result is that many patients in need of spiritual care never receive it, and many key insights are not shared between these disciplines, to the detriment of patient care.

Methods

Authors designed a 12-hour curriculum in 4 sessions between physicians & chaplains:(1) spirituality and the chaplain-doctor partnership;(2) the chaplain’s role on the interdisciplinary team;(3) spiritual & emotional issues related to pain and suffering;(4) death and dying.

Aims were:(1)provide spiritual care training to physicians;(2)equip chaplains to step into role as integral members of the team;(3)strengthen the partnership between chaplains and doctors;(4) provide clinicians with space for reflection, creative expression, connection to self and meaning.

Sessions consisted of a case study, large group didactic, small group discussion, creative expression, and cross-discipline partnered reflections.

Authors conducted post-session interviews. A thematic analysis was conducted.

Results

Physicians reported increases in: awareness of chaplain’s role; frequency of collaboration with chaplaincy; understanding the importance of a patient’s spirit in their care plan; skill in conducting spiritual screenings / histories; ability to traverse difficult existential terrain with patients; awareness of how spiritual distress manifests; recognizing importance of caring for their own spirit in their work; connection to self and work. Chaplains reported an increase in: understanding value of role and voice to the care plan and IDT; confidence engaging the IDT; partnership with physicians in clinical work; understanding of physicians' stressors and distress factors and where chaplains could be helpful.

Conclusions:

This curriculum enhanced attitudes and competence of participants in navigating spiritual distress & understanding chaplains and physicians as partners in healing. It suggests that cross-discipline, reflective learning allows for integration of the human spirit in medicine, strengthening comprehensive patient-centered care and mitigating clinician burnout.

Background:

Dementia grief can be defined as caregivers’ emotional responses to the losses associated with dementia. Experiencing dementia grief is associated with different mental and physical health problems. Little is known about mental health providers’ knowledge about dementia grief.

Objectives:

In this study, a psychoeducation sheet was co-designed with dementia experts, informal caregivers, and healthcare professionals to raise awareness for the concept dementia grief.

Design:

The psychoeducation sheet was presented to German mental health providers in an online survey. The 381 participants were psychological or medical psychotherapists, and medical doctors in the field of psychiatry, psychosomatics, psychotherapy, and neurology. Information about participating mental health professionals’ demographics included their age, gender, profession, special expertise, work setting, years of experience, having a relative with dementia, caring for a relative with dementia, experience treating people of the age of 65 or older, experience treating caregivers of PwD, continued education on grief and loss, subjective competence in assessing and treating grief.

Methods:

The psychoeducation sheet’s acceptability, appropriateness, and feasibility were rated. Furthermore, the providers’ need for the psychoeducation tool, as well as their opportunity, capability, and motivation to use it was assessed.

Results:

Most participating mental health professionals accepted the tool (55.4% agreement, 33.9% full agreement), found it appropriate (64.6 % agree, 25.5 % fully agree) and feasible (55.9 % agree, 25.2 % fully agree). Similar results were obtained for the providers' assessment of need (46.5% agree, 15.7% totally agree), opportunity (57% agree, 28.9% totally agree), capability (50.9% agree, 44.1% totally agree), and motivation (48.8% agree, 23.4% totally agree) to use the sheet. Furthermore, motivation was the most important positive determinant of all three implementation outcomes.

Conclusion:

The psychoeducation sheet about dementia grief might be a new helpful, additional tool used by mental health care providers to educate patients in dementia caregiving life circumstances.

Background: Conversations about serious illness frequently cause discomfort among patients nearing the end of life. This unease can hinder their comprehension of prognosis and treatment choices, potentially affecting the decisions they make and their overall well-being. Identifying how physicians might reduce that discomfort could improve care.

Objective: This study investigated which physician communication styles and characteristics are perceived as comforting in physician-patient serious illness conversations.

Design: Nationwide online factorial survey study.

Methods: The online survey was provided in German, French, and Italian. A total of 1572 individuals from the Swiss public (51.4% women) whose ages ranged from 16 to 94 years participated. Each participant evaluated 5 out of 1000 distinct vignettes depicting interactions between physicians and cancer patients receiving terminal prognoses. In these interactions, we systematically manipulated 11 attributes: experience of the physician, sex of physician, sex of the patient, age of the patient, prior relationship to physician, clarity of information, self-disclosure, physician taking time, recommendation, expression of sadness, and continuity of care. Participants evaluated their comfort level with the physician described in the five vignettes.

Results: Clarity of information delivery (β=2.13, p<.01), taking enough time (β=2.00, p<.01), and mentioning continuity of care (β=1.27, p<.01) were the strongest predictors of comfort. Prior physician-patient relationship significantly increased comfort, with a more prolonged relationship being even more comforting (p<.01). Physician self-disclosure (β=0.41, p<.01) and physician expression of sadness, including tearing up (β=0.46, p<.01; β=0.58, p<.01) were also found to increase comfort. Failing to provide reasons for recommendations decreased comfort (β=-0.24, p<.01). Recommendations based on experience did not influence comfort, but if based on patient preference, increased it (β=0.30, p<.01).

Conclusion Taking time, providing clear information, and ensuring continuity of care are crucial for improving comfort during serious illness conversations. Also relevant for increasing comfort levels are the expression of sadness, the physician's self-disclosure of personal information, and establishing a prior short or long relationship with the patient.

Background:

Despite most people in the UK reporting a preferred place of care and death as home, in 2021 nearly three quarters of those who died spent some time in hospital during the last 6 months of life. In increasingly busy and stretched acute hospital services, it can be challenging to recognise, adequately support and discharge patients approaching the end of life.

Objectives

To trial the integration of palliative care into the acute medical setting. Our hypothesis was that proactive and early palliative care input could promote patient centered care, promote early discharge and advanced care planning (ACP) and improve complex symptom management.

Design

A pilot study was completed at a London hospital with members of the palliative care team (PCT) proactively seeing patients within the acute medical and emergency departments (ED). Inclusion criteria for review was deliberately broad, but included a prognosis of less than one year, symptom concerns or a request for ACP.

Methods

A scoping exercise was done through spending time with the acute medical and ED teams, attending handovers and discussions with key stake holders. We retrospectively audited patient admissions, who had subsequently died, and proactively audited the patients we saw for a quantitative comparator. We led peer-to-peer teaching with the acute medical and ED teams.

Results:
The service prompted direct ED discharge of 3 patients, and a further two were referred to a hospice within one working day of admission. The length of stay was 11 days in the retrospective audit and 5 days for those seen by the service. ACP and community palliative care referrals additionally increased. This enabled patients to be in their preferred place of care. We promoted service integration between community, primary and secondary care services. We hypothesise our service would reduce admissions and bed day costs if upscaled.

Our ability to effect change was limited by internal and external factors including hospice waiting times, availability of community social care, and the uncertainty that acute medical illness poses. Our comparative data has self-selection bias as we proactively sought patients for palliative care input.

Conclusion:

As acute medical services continue to face increasing pressures, palliative care in acute settings can help through supporting the recognition and management of patients approaching the end of life, encouraging proactive discharge decisions, early ACP and supporting staff.

Background
The risk of venous thromboembolism (VTE) and lung embolism (LE) is particularly high in palliative care (PC) patients, who often have multiple conditions with an elevated risk. While VTE/LE is associated with distressing symptoms such as pain and dyspnea, thromboprophylaxis can also increase the risk of bleeding.

In current clinical practice, direct oral anticoagulants (DOAKs) have gained importance as both therapy and prophylaxis.

Objectives
To provide a literature overview of DOAKs in PC, in the context of secondary prophylaxis of DVT and/or pulmonary LE and of the current practice in PC institutions in German-speaking Switzerland, Germany, and Austria.

Design
Qualitative expert survey with case vignettes

Methods
1) Scoping review in Medline and Embase in order to identify recommendations for,
and
2) an online survey among PC physicians and pharmacists to explore current practice regarding the use and deprescribing of DOAKs, in the context of secondary prophylaxis of DVT/LE in PC patients.

Results
We included 13 publications, with 10 reviews from Europe. Most recommendations were based on cancer-associated thrombosis. The decision to discontinue or avoid anticoagulation in PC should be based on shared decision making (11 publications), renal (11) and liver (9) function, life expectancy (8), bleeding risk (8), cancer type (7), thrombocytopenia (4), and nutritional status (3).
46% of publications consider the evidence base for DOAKs questionable, while 54% discouraged anticoagulant use at end-of-life altogether.

The survey was answered by 41 of 62 (66%) of experts.
The majority (36/39, 92%), would generally consider secondary prophylaxis with a DOAK in the case of a previous DVT and LE in a cancer patient, and a life-expectancy of 3-6 months, provided there is no contraindication. Main reasons were the high risk of VTE recurrence and the benefit to the patient’s quality of life. Substance of choice was apixaban (27/32, 84%). Discontinuation was considered with a life expectancy of ≤ 2 weeks (13/33, 39%) or a few days (12/33, 36%).
Twentysix experts reported difficulties in decision making in case of TVT/LE in end-of-life care.

Conclusions
Experts showed a high readiness for the use of secondary prophylaxis of VTE/LE in PC patients and were open to consider DOAK, mainly due to a perceived high recurrence rate and symptom burden.
The use as well as deprescribing of DOAKs in PC for primary and secondary prophylaxis as well as therapy still lacks evidence.

Background Under-served and under-studied population groups disproportionately affected by social inequalities do not habitually access palliative care services. This suggests that those in these groups do not have access to palliative information and services that meet their needs, contributing to and reflecting low levels of health and death literacy (i.e., the language, knowledge, and practical skills needed to make active end-of-life choices).

Objectives To evaluate a) if working with community leaders with four targeted culturally and linguistically diverse (ethnic minority) communities to design and deliver materials via culturally appropriate, accessible language and modes of delivery is associated with an increase in death literacy within their communities; and, b) the experiences and observations of community leaders regarding their involvement and study processes/outcomes.

Design Mixed methods: quantitative—pre-post evaluation, qualitative—focus groups.

Methods Collaborating with local peak-bodies advocating for palliative care and minority ethnic communities, we provided training and support for community leaders within four language-groups/communities (i.e., German, Italian, Tagalog (Filipino), and Vietnamese) to undertake various activities sharing information about death, dying, and grief within their community.

Results We report on the processes and outcomes of this study specifically regarding a) a pre-post (at 0 and 6m) intervention study, to quantitatively assess the effectiveness of community-led activities in promoting discussion and knowledge regarding death, dying, and palliative care, accounting for local conditions and cultural factors; and b) focus groups during and after the intervention, drawing on community leader views on the process and outcomes of their engagement with researchers, palliative care advocates, and other community leaders; their community-based activities' the processes of translation for consent and administration of the Death Literacy Index within their community; and the nature of activities undertaken to capture and strengthen community resources regarding accessing and providing care for those at the end of life.

Conclusion We highlight the differences and similarities within communities and outline provisional recommendations for future collaborative engagement with other under-served populations regarding discussions about, promotion of, and conduct of research about death literacy.

End-of-life and palliative care often revolve around planning and transitioning to death for individuals. Simultaneously, the emotional landscape involves navigating palliative care and pursuing one's life purpose and goals. It is crucial to recognise that palliative care is not solely relevant to older individuals; early awareness benefits all, fostering understanding of life, acceptance, and making the most of our time. Advanced dementia necessitates palliative care to ensure a dignified death, presenting challenges such as diminished decisional capacity and reliance on proxy decision-making. Stigmatisation exacerbates these difficulties, leading to rejection, discrimination, and social exclusion, necessitating concerted efforts to raise social awareness. In Thailand, fostering such awareness is crucial, and adopting an art-based approach can profoundly reshape perceptions of ageing and dementia, transcending perception barriers.

The "Healing Light Exhibition," held at the Palette Art Space in Bangkok from December 7th to December 18th, 2023, provided a platform for meaningful dialogue among diverse participants, including medical professionals, informal caregivers, artists, and students. This exhibition served as a focal point for an exploratory study aiming to examine the role of art and awareness by using cyanotype to explore Thai content. Employing autoethnography as a research approach, this study explored personal experiences to gain insights into broader cultural phenomena. Field notes and sketches were analysed thematically to uncover novel perspectives on dementia and palliative care.

The healing light exhibition centred on discussions about dementia and palliative care, highlighting individual perspectives and societal constructs of self-identity. Often overlooked in dementia care design are art's emotional and therapeutic dimensions, as designers and architects tend to prioritise physical aspects. Consequently, a gap exists between the needs of people with dementia and existing norms. Recommendations should explore various art mediums, contents, and environments to conduct therapeutic engagement, which can increase public awareness. Additionally, future research should gauge and measure the long-term impact and efficacy of innovative arts-based approaches in palliative care in Thailand.

Background: In 2014, the World Health Assembly (WHA) approved the Resolution urging national governments to carry out actions to develop palliative and end-of-life care.

Objectives: To advocate for and develop policies and actions toward advancing palliative and end-of-life care in the Philippines.

Methods: The national movement to promote palliative and hospice care started in the early 2000s. In 2012, the Palcare Hospice Foundation organized the First Regional Conference on Palliative and Hospice Care. In July 2013, a House Bill entitled “Hospice and Palliative Care Act: Integrating Palliative and Hospice Care into the Philippine Health Care System” was filed in Congress. The bill passed the lower house in January 2015.

The 2015 Quality of Death Index has listed the Philippines, out of 80 countries, as one of the worst places to die. The country scored poorly regarding the quality of end-of-life care available.

In December 2015, the Department of Health (DOH) issued an Administrative Order, the “National Policy for Palliative and Hospice Care in the Philippines.”

Results: In 2019, two landmark bills were enacted: the National Integrated Cancer Control Act (NICCA) and the Universal Health Care (UHC) Law. In 2021, The Department of Health-Manual of Operations, Procedures, and Standards (DOH-MOPS) for the National Palliative and Hospice Care Program was launched. As a result of these efforts, in 2021, the global ranking of the Philippines in the Cross Country Comparison of Expert Assessment of the Quality of Death and Dying rose to 38th.

In November 2023, the Department of Health (DOH), in partnership with Jose B. Lingad Memorial General Hospital (JBLMGH), led the development of the first Philippine Clinical Practice Guideline (CPG) on palliative and end-of-life care (PEOL) for adult patients with cancer. This local CPG will be used for policy and benefit package development and disseminated widely through various channels.

Conclusion: This year, 2024, will see the roll-out of primary care physicians nationwide training on palliative and end-of-life care using the DOH-MOPS and the Philippine CPG. The DOH’s vision is to provide comprehensive cancer care and optimized cancer survival by 2025. For those who will not be able to survive cancer, it is hoped that the trained primary care physicians will still be able to render quality end-of-life so that most seriously ill Filipinos will die in comfort and with dignity.

Background: Patients approaching end of life often express a desire to spend their last months – and even die – at home, if given appropriate support. Thus they may benefit from palliative care at home. To support patients to live as well as possible in end of life, the 6S model for person-centred palliative care has been developed in Sweden.

Aim: To summarize and synthesize the literature regarding patients’ and carers’ perspectives of palliative care at home through the analytic lens of the 6S‐model for person‐centred palliative care.

Design and method: A scoping review was performed with PubMed, CINAHL, and Scopus (2008- June 2019) including twenty-four studies illustrating the perspectives of the patient (1), patients and carers (4) and solely carers (19). A qualitative deductive analysis was applied using the 6S model: Self-image, Self-determination, Symptom relief, Social relationships, Synthesis and Strategies.

Results: Palliative home care enabled patients and carers to maintain daily life, which strengthened their self-image. However, if carers’ expectations of the healthcare system were unmet, it could be perceived as a threat. Adequate symptom relief was sometimes described as a prerequisite for palliative home care, as severe symptoms caused uncertainty and distress. Fulfilling the patient’s wish to be cared for at home contributed to the experience of maintaining control: self- determination. Continuity and familiarity (including having family and friends around) was preferred when establishing relations with professionals. Social relationships were thus crucial to the patients and contributed to their wellbeing. Synthesis and strategies involved finding meaning in their situation and being able to share life stories. For carers, support from healthcare professionals was crucial, as they provided information about the patient’s condition and the unfolding of the dying process.

Conclusion: Our results demonstrate that the dimensions in the 6S model are relevant for both patients and family caregivers when palliative care occurs at home. Database searches from more recent years are ongoing, which might modify the results.

Background: Palliative care (PC) professionals should be aware of spirituality as a human being's essence. We must overcome the biopsychosocial paradigm to a more fully lived experience approach in spiritual care (SC). Advanced training in SC is common in Anglo-Saxon countries, but in the Spanish-speaking, the initiatives have been few and out of the higher education settings.

Aim: To develop an innovative SC education program based on five SC competencies of the European Association for Palliative Care (EAPC).

Design: This Ibero-American advanced educational program was conceptualized in two phases: 1) operationalization of the EAPC competencies in indicators made by a transnational team of experts composed of pedagogues, physicians, psychologists, and nurses with large experience in PC; and 2) design of specific content and activities for those SC competencies development-based on Kolb cycle of experiential learning, “Harvard Project Zero” learning methodology and narrative pedagogy using “Action Learning System”.

Results:

We have structured an online course with weekly synchronous sessions and scheduled asynchronous student work. It is structured into 45 sessions (lasting 120 minutes, each). All the content has been structured in six subjects: 1) core concepts in spirituality and SC; 2) self-awareness and spirituality; 3) basis of spiritual accompaniment; 4) spiritual accompaniment in the clinical practice; spiritual care in special conditions and vulnerable groups; and 6) knowledge translation into practice. The synchronous part consists of 3 types of sessions: “general sessions” (meet the experts and lectures); “nuclear sessions”: tutorial small groups work; “integration sessions”: reflective practice to foster decision making and critical thinking. Asynchronous sessions include discussion forums, self-made narratives, suggested readings, and reflective writings. For course evaluation, we use a mixed-method approach: written assignments, e-portfolios, reflective diaries, and a final project on SC in practice.

Conclusion

This course is ongoing on the 3rd edition with a high demand of participants from several geographical areas and backgrounds. The expected learning outcomes include intra-, inter-, and transpersonal development in suffering attendance and deepening compassion in professional settings. Further research should address the different expertise levels of spiritual care competence.

According to two Swiss surveys, many elderly people would like to die at home. Reality is different and most die in hospital. There are numerous reasons for this discrepancy, notably the lack of end-of-life drugs available at home. General practitioners may be unfamiliar with prescribing and administering the "Four Essential Drugs Needed for Quality Care of the Dying," which include analgesics, anti-secretory and/or sedatives. Trained and available home care teams are needed to support patients and provide active palliative care. General practitioners may not have palliative training, and palliative care team intervention may not always be possible/necessary. To assist these physicians, a comfort care order set was developed in conjunction with palliative care training. Order sets have proven to reassure, guide clinicians and prevent prescribing errors, thereby improving patient safety.

Project: Computerized comfort care order sets for common end-of-life symptoms such as pain, anxiety, agitation, shortness of breath, and death rattle were created by an interdisciplinary group of geriatricians and palliative care specialists. Goals include preventing medication errors, promoting patient safety, and facilitating accurate end-of-life prescribing. Order sets include established protocols, doses, and non-drug interventions. Physicians can select the appropriate medication from a recommended list based on symptoms and efficiently change the dose/frequency. Once signed, medications appear in the patient's record, also visible when the patient is admitted. It can also automatically generate a prescription for the pharmacy.

Evaluation: A questionnaire will be sent to physicians using these comfort care order sets to assess their experience in prescribing end-of-life medications before and 3 months after implementation. A short training course in palliative care will be offered. Results will be analyzed based on improvement in physician comfort with prescribing and ease of prescribing the system's integrated order sets. Comparison of opioid prescribing and documentation errors pre and post.

Our hypothesis is that comfort care order sets will increase primary care physicians' comfort level with prescribing of essential medications for end-of-life care at home and improve anticipation of emergency situations. These comfort care order sets may contribute to patient safety in general and may be extended to other settings, such as general internal medicine wards.

Background:

Health Canada has a public education campaign to support early palliative care. They partnered with The Waiting Room Revolution, which is a social movement designed to activate patients and families to leech out an early palliative care approach without the labels. It focuses on teaching patients and families 7 keys to apply early in a life-changing diagnosis to increase hope, preparedness, choice and control.

Objectives:

To describe, evaluate, and synthesize learnings from a public campaign of the Waiting Room Revolution, in partnership with Health Canada. This includes multiple public-facing events, in partnership with diverse organizations, to the public.

Design:

During January 2024 - September 2024, we will embark on dozens of public-facing events to describe the 7 keys of the Waiting Room Revolution. They are targeted to the public, patients, families, and community organizations and providers. During that time, we will also be co-designing several disease-specific roadmaps with patients, families, and providers to encourage seeking information early in an illness.

Methods:

To evaluate the impact on the understanding of palliative care due to the events, we will collect evaluation data about perceptions of palliative care, advance care planning, and the need for patient and family activations. We will collect audience questions and reactions. For the co-designed disease-specific roadmaps, we will develop prototypes and conduct qualitative interviews with patients, families, and providers, to arrive at a final version of the tools.

Results:

We will share organizations we partnered with, # of attendees, the main questions and reactions, and our key learnings. We will also share the results of the evaluation questions. For the patient-facing tools we co-designed, we will describe the changes made from the prototypes due to feedback from patients, families, and providers, and share the final version of the tool(s), their key features and the rationale behind them.

Conclusions:

So far, the public reaction to The Waiting Room Revolution has been incredible. It is a complement to public health palliative care strategies, such as Death Cafes, as this targets patients and families facing a life-changing diagnosis presently. Understanding the messages that the public successfully respond to and are motivated to implement is an important part of achieving PHPCI mission.