Conference Agenda

Background: Compassionate Communities are practical examples of public health palliative care that aim to bridge the gaps in access, quality, and continuity of care in the context of serious illness, end-of-life, loss, and grief. There has been research on Compassionate Communities for over 20 years, but community engagement, as a core principle of public health palliative care, has received little attention in empirical studies.

Objectives: The objectives of the presentation are to describe the evolution of community engagement processes in different contexts, its influence on the implementation trajectories, and the outcomes of two distinct Compassionate Communities in Canada.

Design & Methods: Anchored in a community-based participatory research approach, we developed a longitudinal comparative design using ethnographic methods to study how community engagement evolves in different Compassionate Community contexts. The multi-site ethnographic data set covers 337 hours of fieldwork, including participant observation (236 hours); interviews with key informants (n=26); and project logbooks (over 1500 detailed entries).

Results: Findings show that professionally-led initiatives focused on the implementation of existing programs "in" the community tended to create less community engagement and buy-in. Conversely, community facilitation focused on relationship-building among actors and strength-based asset development yielded intersectoral collaboration that fostered a stronger sense of community engagement and ownership. These trajectories, with their strengths and weaknesses, also appear to influence short-term outcomes and project sustainability in different ways. Results and outcomes from both implementation trajectories will be presented in relation to community engagement processes and initiatives’ sustainability.

Conclusion: These results highlight that the attitudes and behaviors adopted by compassionate community developers can promote or hinder community engagement. As such, these findings can be leveraged to engage communities in more meaningful ways. Thus, ensuring greater success, stronger impacts, and fostering more sustainable Compassionate Communities.

Background

What are the policy considerations for integrating medical and social care to transform the way we care for older Australians at the end of life? The Churchill Trust provided fellows an opportunity to present new policy ideas to the Australian parliament. My 2022 policy paper was launched at Parliament House and it identified that there was no public policy in Australia that integrated medical and non-medical services at end of life.

Objectives

This presentation explores the development of a policy framework to support the integration of medical and non-medical services and supports at end of life, taking a holistic and community-based approach to supporting people at the end of their lives.

Design

There are several ways in which formal and informal services can be integrated to the benefit of the community. This can include the engagement with compassionate communities, mobilising volunteer and wider community networks, collaboration with other charities and organisations – often it is about listening and then taking steps to rewrite policy, reconsider direction and rethink service provision.

Methods

My paper proposes bringing together both medical and non-medical stakeholders to co-design a holistic client-centred policy approach which includes:

• investigating the infrastructure needs to adequately support people to die at home;
• developing the resources/education required to support families and communities who choose community and family led home funeral and after death care;
• formulating strategies to promote the inclusion of end of life doula services as part of aged care and Care packages; and
• expanding the scope of existing death literacy and advance care planning programs and services to include the non-medical supports for end of life care.

Results

This project has received bipartisan support from politicians on both sides of politics in State Government within Australia; discussions are now being had as to how this can be trialled. Additionally, there is an aged care provider considering the re-write of their policies to include an integrated, holistic approach to living and dying in aged care.

Conclusion

This policy initiative of integrated end of life care is an Australian first. Already, governments and industry have acknowledged the need to include both medical and non-medical approaches in order to provide the best care possible to clients. It is now time to consider how exactly, we do this.

Background

Death literacy includes a set of activities that aim to promote reflection and understanding related to the topic of death, dying, and bereavement. We report on the development of an international train-the-trainer course for the promotion of death literacy in three European countries (Romania, Portugal, and Austria). The aim of the course – which is part of a larger project cooperation - is to develop and implement creative educational formats to make palliative culture tangible and promote it in different contexts of society and aligned with the "Compassionate Cities" movement.

Design

The curriculum development is oriented towards the core dimensions of death literacy and teaches skills in the areas of "working with groups", "project management", "theory", and "best practices". Developing this specific train-the-trainer course curriculum, together with the participants, will enable them to create learning communities to develop palliative culture according to the dimensions of "death literacy". The course curriculum allows participants to learn from each other by sharing their different cultural heritages. The intercultural learning process between the three countries is important both at the level of the participants and at the level of the organisers/ cooperating institutions.

Methods

The course consists of five transnational modules developed in-person and videoconference sessions. Each module includes different training tools, such as meet the experts, case-based learning, team-based learning, and institutional visits. Participants are professionals with experience in the field of palliative care, with (basic) training experience. A formative evaluation accompanies the process of developing the curriculum and the course in order to gain relevant insights for further research and practice.

Results

The project is ongoing, and final results will be available at the conference. It has already become clear that specific knowledge content on palliative care has become less and less important over time. The focus shifted to intervention ideas and project management in order to empower people in different contexts in the sense of death literacy.

Practical conclusions

The project is still ongoing, but one relevant aspect could be to understand curriculum development (train-the-trainer) for promoting death literacy as an ongoing process in dialogue with the needs of different contexts and participants.

The dementia-friendly 3rd District was established in 2014 with the goal of developing and promoting awareness and civic engagement. Various offerings are intended to reach people with dementia and forgetfulness, as well as their relatives and companions, in a low-threshold manner. The dementia-friendly 3rd District is a growing care network centered on individuals who need guidance and counseling. Since its founding, one of the primary goals of the network partners has been sustainable awareness-raising, knowledge dissemination, destigmatization, and visibility of forgetfulness and dementia. The network is characterized by its openness to new trends and societal developments, which represents another goal. Following this objective, the „Promenz Gruppe 1030“ has been part of the network since 2023.

In line with the first objective of the Österreichische Demenzstrategie (Austrian Dementia Strategy), "Ensuring participation and self-determination of those affected," representatives of the network worked together with PROMENZ between autumn 2022 and summer 2023 to implement the project „Promenz Gruppe 1030." The necessary resources for this were distributed among the network partners. The first „Promenz Gruppe 1030" was able to start in September 2023. Users benefit from both the exchange and counseling, which fosters supportive relationships, and from becoming self-advocates who speak about their condition at conferences and collaborate in working groups with Gesundheit Österreich GmbH.

In each of the regular network meetings, the network partners exchange proven practices and new ideas. Central to these considerations is the question of resources. Ideas and actions can only be implemented in small steps using the network's own resources. Implementation is done voluntarily or as an organizational contribution from the participating network organizations. Despite this, the network is growing and is committed to "Dementia Literacy," because dealing with dementia and forgetfulness must become natural. To achieve this goal, sustainable awareness-raising and knowledge dissemination at various levels, as well as the participation of those affected and the enabling of experiential knowledge in the population, are what the dementia-friendly 3rd District network tirelessly and continuously strives for.

Background

Research suggests that trust in physicians is a prerequisite for engagement in advance care planning (ACP). A pilot study demonstrated that information meetings on end-of-life care by general practitioners (GPs) increase trust in physicians and stimulate ACP among older people. However, it is unknown whether this is true for meetings held by other organizations (e.g. hospice).

Objectives

To examine whether patient’s trust in physicians to provide good end-of-life care changes directly after and 6 months after an information meeting on end-of-life care, and whether this differs between meetings held by GPs or others.

Design

A pre-post interventional study was designed with questionnaires before (T0), at the end (T1), and 6 months after (T2) the information meeting. Between February 2021 and December 2022, 105 information meetings were organized, of which 57 by GPs and 48 by other organizations.

Methods

1,737 older people filled out questions on trust at T0 and T1 and 1,083 at T0 and T2. Per type of meeting, separate marginal homogeneity tests were done to assess change in trust. Logistic regression analyses (Generalized Estimating Equations) were done to assess whether the type of meeting was associated with an increase in trust (corrected for age and sex).

Results

At T0, most attendees of GP and other meetings had high (resp. 55% vs 58%) or very high (35% vs 19%) trust in physicians to provide good end-of-life care. Attendees of GP meetings changed significantly in trust between T0 and T1 (p<0.001). Change in trust was not significant between T0 and T2 (p=0.151). Attendees of other meetings did not change in trust at T1 (p=0.178) nor T2 (p=0.112) compared to T0. Looking at direction of change, attendees of GP meetings were more likely to increase in trust (OR 1.74 CI 1.27-3.39) between T0 and T1 compared attendees of other meetings. There was no difference between GP and other meetings in increase in trust between T0 and T2 (OR 0.97 CI 0.64-1.46).

Conclusion

Overall, patient’s trust in physicians to provide good end-of-life care was high. Information meetings by GPs resulted in a significant increase in trust directly after the meeting. This was not true for attendees of other meetings. Thus, having a physician present at the meeting may contribute to patient’s trust, and possibly more engagement in ACP. The change in trust did not last after 6 months. Further research could provide insight in whether this differs for having had ACP conversations with GPs.

Social connection is essential to human well-being. To live a good life one needs mutual help and support from others, especially when faced with aging, serious illness or other troubles. In the city in northern Japan where I work as care manager, however, demographic aging is going on in a significant manner and the elderly people in growing numbers are socially isolated with the high percentage of elderly and single-person households. In addition there are those residents who relocated from east coastal areas after the 2011 East Japan Earthquake and subsequent. They often lack social connections. This leads to hinder not only cooperation and mutual assistance at the time of disaster but individual inhabitant’s good life.

For the past 18 years, I've been leading a community project, based at local community palliative care support center, to foster ‘community connectors’ who accompany individual patients and families as well as palliative care volunteers. The training curriculum emphasizes the importance of experiencing the presence of the others with one’s mind and body. Developing compassion and new relationships, future ‘community connectors’ learn to act on their own initiatives. They support patients and families, take part in rehabilitation programs, and share treasures of local community with multi-generational and multinational residents.

Our continuous efforts bear fruit of compassionate community and manifold social network. Mutual helping and supporting relations are built. When some patients find it challenging to go out, ‘community connectors’ visit their home and sing their favorite songs together. In times of bereavement, community members gather together to remember the dead, with Buddhist sutra chanted by terminal cancer priest who once suffered with alcoholic dependence. Some ‘community connectors’ host amateur singing contest with local residents, inviting people with multi-generational and multinational backgrounds including home care patients, care facility residents and those who moved from disaster affected areas. By remembering each life of fellow companions and expressing their own feelings in words, they get emboldened to live their own lives. By supporting others, they realize that they are also supported. We thus witness the emergence of compassionate community.

Background: Death literacy is a multidimensional construct conceptualizing broad non-professional competence and preparedness for engaging in end-of-life care and support in civil society. It is operationalized as a six-factor model in the Australian 29-item Death Literacy Index (DLI). The DLI has gained international interest as a potential outcome measure for competence-building interventions related to the end of life, but it is not yet known whether death literacy is understood and measured in a comparable manner across countries.

Objectives: The aim of this study was to translate and adapt the DLI in Flemish Belgium (FL), the Netherlands (NL), and Sweden (SE) and to examine cross-national equivalence (also called measurement invariance) of the theorized six-factor model across national samples.

Design: International cross-sectional survey with nation-based quota samples of adults recruited from a European online panel agency.

Methods: Survey responses were analysed using multigroup confirmatory factor analysis.

Results: Country-specific DLI versions were developed through an iterative multi-step translation and adaptation process. The nation-specific DLIs were completed by 1516 participants (FL=502; NL=511; SE=503). The six DLI sub-scales showed satisfactory reliability and the six-factor model had good fit in each sampled country. The DLI met conditions for configural invariance (comparative fit index (CFI)=0.968, root mean square error of approximation (RMSEA)=0.067), scalar invariance (ΔCFI=-0.001, ΔRMSEA=-0.003), and metric invariance (ΔCFI=0.001, ΔRMSEA=-0.002). All but one item had strong (>0.60) factor loadings to their hypothesised scale; for six items factor loadings differed by ≥0.1 between countries.

Conclusion: We found the DLI’s measurement of death literacy was equivalent without systematic bias across the three national samples. This finding suggests that death literacy can be a relevant and comparable cross-cultural construct for community preparedness and self-efficacy for engaging with end-of-life care. Our study provides initial support for using the DLI to make cross-national comparisons of death literacy and its potential as an appropriate instrument for evaluating impact of competence-building interventions internationally.

Background

Dyspnea is the most common symptom in COVID-19 patients, particularly in the terminal phase. It is difficult to manage because it rapidly worsens as the patient deteriorates within days of illness onset. In addition to severe physical symptoms, physical isolation and survival uncertainty aggravates the patient’s anxiety and depression. This forms the impetus of palliative care’s role in symptom control and facilitating goals of care discussion to address physical, psycho-emotional, social, and spiritual needs. However, since Specialist Palliative Care (SPC) may not be available widely, there is a need to quantify and profile a group of severe COVID-19 patients with low opioid usage who can be supported by Generalist Palliative Care (GPC).

Objectives

To measure the quantity and identify clinical factors of patients with severe COVID-19 infection who can be supported by GPC.

Design/Methods

This retrospective cohort study examined non-ventilated severe COVID-19 patients admitted to the National Centre for Infectious Diseases (NCID) in Singapore and seen by SPC from January 2021 to July 2022. Patients were either directly referred (DR) to SPC or screened by an SPC Advanced Practice Nurse using the early identification (EI) criteria based on resuscitation status and oxygen requirement. Baseline demographics were collected. Clinical status based on the International Severe Acute Respiratory and emerging Infections Consortium (ISARIC-4C) score, Edmonton Symptom Assessment System revised (ESAS-r) and palliative-related treatments were recorded. Patients with a morphine equivalent daily dose (MEDD) of ≥45mg and/or benzodiazepine use for dyspnea were grouped as high users, while patients with MEDD <45mg were considered as low users. We conducted multivariate analysis to identify factors in patients suitable for GPC.

Results

234 patients were included. 109 (47%) tested positive through EI with a median ISARIC-4C score of 14 (IQR 12-16). Amongst the EI patients, 51 (67%) needed opioid infusion, and only 45 (41.3%) were high users. Amongst the DR patients, 73 (58.4%) received opioid infusion, and only 50 (40%) were high users. A multivariate analysis indicated that patients with low ESAS-r graded dyspnea scores and respiratory rates were low users.

Conclusions

60% of patients with severe COVID-19 infection were low users and can be supported by GPC. Further studies should quantify role of GPC in other life-limiting illnesses.

Conflict of Interest/Funding

None.

The aim of my research was to offer an authentic personal narrative of what matters to people at the end of their lives. I sought to attend to death as an integral life experience that brings about distinct and meaningful connotations of selfhood and identity. Principally, I sought to understand how (or if) the social construction of gender, and social difference more broadly, is important to our end-of-life experiences and wishes.

To attend to the nuances of experience in death and dying, I adopted an ethnographic people-centered approach with a series of semi-structured interviews which held a loose structure of questions but prioritised storytelling and participant-led interview direction.

One of the most pivotal findings of my study were that death had a catalytic effect on gender identities. My research found that gender had a cognitive role in experiencing and talking about death whereby the differential social roles of women and men proliferate at end of life. This substantiated the analytical standpoint for the study’s findings; summarised as:

1. People pre-empt their end-of-life considerations through their understanding of their gender. Notably, my female participants all fixated on the notion of the ‘altruistic caregiver’ as explanatory of their end-of-life wishes whilst the men were deeply engaged in the finances and ‘overseeing’ of the family as their priority.

1. Gender foregrounded the justification of people’s thoughts and experiences of death through the primacy of their identification of women and men. My participants expressed worries about their death as bounded by their understanding of their own gendered expectations of duty of care for others in their family; largely their children or spouses.

1. Death can reaffirm or challenge gender and its’ animations; but this is not linear. Gender knowledges and identities can be equally complicated by our reflections on death, which was exemplified by the men who I interviewed that each experienced a sense of renegotiation in their gender identity through their personal experiences of death. In turn, this changed the way they both felt and experienced emotion.

My research demonstrates the crucial need for future research on death, dying, and gender whilst indicating the pivotal differential priorities which matter to people at the end of their lives. Further, my findings offer a complicated perspective on the differential support needed for men and women in end-of-life conversations.

Background

Lesbian, gay, bisexual, transgender, queer and other gender diverse (LGBTQ+) people experience healthcare inequity due to discrimination, assumptions made by healthcare workers and anticipating discriminatory behaviour. It often may not feel safe to access screening programmes and ignored symptoms may result in late diagnoses, advanced illness, and delayed referral to palliative care. Previous negative experiences frequently create societal exclusion and a fear of rejection related to gender, identity, or sexual orientation.

In recent years rainbows and pride flags displayed in healthcare environments have suggested a movement toward inclusive care. However, it goes beyond well-meaning gestures to better understand the principles of equitable palliative care for LGBTQ+ people.

Objectives

We sought to explore the experiences and concerns of LGBTQ+ people accessing palliative care and provide a safe environment to think about priorities for future care. We recognised the need to co-develop a resource to increase healthcare workers awareness and curiosity of LGBTQ+ inclusive care.

Design

9-month qualitative study

Methods

This was an equity-oriented study directed by the values of co-production and involved the recruitment of 10 LGBTQ+ people and allies. Arts-based methods used for community workshops were delivered by LGBTQ+ facilitators and data analysed using reflexive thematic analysis.

Results

LGBTQ+ people continue to feel excluded from palliative and wider healthcare services with previous experiences adversely impacting how people feel about accessing care; often hiding their identity or holding negative perceptions of their own end-of-life care.

“Other patients were homophobic; the Hospice and some staff aren’t prepared to take it seriously.”

Results shared through the voices and illustrations of LGBTQ+ people will be presented at conference and a co-designed resource will be internationally launched.

Conclusion

This study found evidence that the barriers experienced by LGBTQ+ people are significantly likely to influence, challenge and disrupt the decisions made when planning for end-of-life care and access to palliative care. Research grounded in co-production and viewed through the lens of people with lived experience is fundamental to addressing inequity in palliative care.

Funding

Marie Curie (RF22-502)

Black Country Integrated Care Board

Background: In the UK, access to palliative care is inequitable, disproportionately affecting global majority communities who are 16% of the UK population (2021).

Aim: The Celebrating Life project is a public health approach to an innovative community engagement initiative. In conversational workshops, the project explores community members perspectives and concerns about their health and wellbeing towards the end of life.

The objective is to promote the knowledge that global majority communities need to gain access to, and make informed choices about, end of life and after death care in the context of their death and bereavement systems.

The service evaluation aims to explore the usefulness of this project in increasing knowledge of palliative care, of care planning and of hospice services.

Design: In two local community centres in North London, 8 workshops were facilitated to encourage reflection on what matters most, and who and what informs treatment choices in advancing frailty and increasing symptom burden towards the end of life.

Methods: De-identified qualitative data was collected with participant consent to develop themes. The project was facilitated by research nurse with the approval of local community engagement manager.

Results: Eight workshops were undertaken (n=185) from July-November 2023. Global majority populations are filial cultures, with male led but family-based health decision making. Death conversations are generally avoided. There is stigma around morbidities like cancer and the use of morphine as treatment, contributing to late disclosure. Institutional mistrust is pervasive, exacerbated by a belief in systemic racism. Poor English language skills made participants feel “invisible”. Family caregiving has a gendered lens negatively biased against women. Robust psychological and practical support for family care givers was considered very important in advancing disease. Advanced Care Planning (ACP) discussions are best facilitated with a trusted, ideally race concordant professional, in a family-based dyad.

Conclusion: Ill-health and death are a psycho-spiritual process (not event), happening in a social context, for global majority populations. 98% participants found the workshops very useful in sharing their views and improving their knowledge of palliative care and Marie Curie services. It is recommended that further workshops are undertaken, and the role of a link worker be explored to build trust and support family caregivers.

Background: The Philippines was considered one of the worst places to die for having very few palliative care specialists capable of providing quality end-of-life care.

Objectives: This study aimed to determine the end-of-life (EOL) competence of neurologists in a training hospital in the Philippines towards developing educational approaches for teaching palliative care to other specialists.

Methods: An online survey was conducted among neurologists and residents-in-training in an academic hospital using the End-of-life Professional Caregiver Survey (EPCS), which covers eight domains of the palliative care guidelines, including spiritual and cultural issues; ethical, professional, and legal principles; organizational skills; and attitudes, values, and feelings of health care professionals. Statistical analysis included frequencies, chi-square statistics, and logistic regression.

Results: Forty neurologists completed the survey. Seventeen percent reported they had basic training in palliative care. Highest scoring items included being comfortable in starting and participating in code status discussions, communicating with health care professionals about the care of dying patients, being able to deal with one’s feelings related to working with dying patients, being present with dying patients, and recognizing patients who are appropriate for hospice referral. The lowest-scoring items included knowing how to use non-drug therapies in the management of symptoms, addressing patients’ and family members’ fear of addiction to pain medications, providing grief counseling for staff, and addressing requests for assisted suicide. The EPCS total score and Patient and Family Centered Communication subscale were significantly higher in participants with prior EOL basic training than those without. There were statistically significant associations between previous basic EOL training and discussing advance directives and specific issues like tracheostomy and gastric tube placement early in the course of the disease.

Conclusion: The EPCS mapped which knowledge, attitudes, and skill areas need to be included in the educational approaches toward teaching palliative care to non-palliative care physicians.

Background: Art Therapy (AT) and Music Therapy (MT) alleviate symptoms such as pain, anxiety and depression. However, there are limited studies demonstrating the benefits of AT and MT in patients receiving palliative care in acute tertiary hospitals.

Objectives: This study aims to assess the impact of AT and MT on the quality of life (QoL) of inpatients receiving palliative care in an acute tertiary hospital. The primary and secondary outcome of the study is AT and MT's effect on QoL and symptom burden respectively. The hypothesis is that AT and MT will improve McGill Quality of Life Questionnaire (MQoL-Q) scores by at least 2 points after 1-2 sessions of therapy.

Design: AMPLIFY is a mixed methods interventional observational study. Patients with any life-limiting illness with a prognosis of less than a year will be eligible to enrol in the study and participate in 2 sessions of AT or 2 sessions of MT.

Methods: The primary outcome is measured using the MQoL-Q, and symptom burden with the Edmonton Symptom Assessment System-revised (ESAS-r). Participants will complete the MQoL-Q and ESAS-r at 4 times points (T₀ toT₃). Baseline data will be collected prior to intervention (T₀), within 2 working days after each therapy session (T₁ and T₂) and 2 weeks from T₀ (T₃). Therapy sessions will be scheduled 2-7 working days apart from each other. Based on powered sample size calculations, we aim to recruit 280 participants. For the qualitative component of the study, semi-structured interviews will be conducted with participants 2 weeks after the second therapy session.

Results: This is an interim analysis of the ongoing study. Of 305 patients screened, 180 participants were recruited. 102 participants completed at least 1 therapy session: 35 died before study completion, with 25 participants too physically or emotionally unstable to complete the sessions and/or questionnaires. 11 were discharged before study completion and 7 withdrew. 98 participants completed the MQoL-Q at T₀ and T₃, and 57 participants (58.2%) showed an improvement of at least 2 points, the Minimal Clinically Important Difference (MCID) of MQoL-Q, between T₃ and T₀. 102 participants completed ESAS-r at T₀ and T₃, and 78 participants (73.6%) showed an improvement of at least 1 point, the MCID of ESAS-r between T₃ and T₀.

Conclusion: Our preliminary results demonstrate that AT and MT delivered alongside standard inpatient palliative care has a role in augmenting patients' QoL.

Background

Pediatric hematologic malignancies are potentially life-limiting and advance care planning is an important aspect in their care. In the Philippines, palliative care is not widely popular, and palliative care providers often encounter pediatric palliative patients and their families who have difficulty in accepting their prognosis.

Objectives

This case study aims to discuss the advance care planning approaches and challenges in an adolescent patient with advanced AML. It describes the palliative careservices provided for a terminally-ill pediatric patient and his family.

Case Summary

This was a case report of a 17-year-old male with AML who had an unsatisfactory response to induction chemotherapy. He was given oral palliative chemotherapy (etoposide) and was referred to the Supportive, Hospice, and Palliative Medicine (SHPM). He had performance status of ECOG 1 on initial referral and was admitted multiple times under Hematology-Oncology (HO) service due to infection complications. He had periodic SHPM follow-ups in his last five months, wherein advance care planning was discussed. Coping and information needs regarding the illness and its poor response to prescribed chemotherapy, as well as the parents’ fear to cause depression and hopelessness to the patient posed challenges in the advance care planning. He was eventually able to verbalize DNR-DNI preference but it was not yet finalized into a written advance care document. He was admitted for the last time due to intracranial hemorrhage and received aggressive measures at the emergency room before his parents finally accepted the poor prognosis and requested to discontinue the life-prolonging interventions.

Conclusion

The case showed advance care planning as a dynamic process that could continue even in the terminal phase. It highlighted that consistent follow-up discussions and good documentation were important in the process of ACP. It demonstrated how bedside counseling, continuous information-sharing, and unconditional positive regard might help a family who was initially undecided or opted for aggressive measures to eventually arrive at decisions regarding end-of-life care preferences. Palliative care service should be available and prepared to respect, support, and help facilitate adequate terminal care for the patient and their family. Parents of pediatric patients were at higher risk for pathologic grief. The value of grief counseling for the bereaved family was also emphasized.

Background and objective
According to one view, legalised assisted dying (AD) would increase the prevalence of general, often tragic, suicide by signaling approval of suicide (“contagion”). Conversely it would be decreased through shifts from traumatic general suicides to harmonious AD (“substitution or prevention”). While no “contagion” evidence is extant, only anecdotal reports from the Benelux countries suggest that the mere possibility of AD can prevent (attempted) suicides.
Switzerland, the Netherlands and Belgium have the oldest laws permitting AD for both terminal and non-terminal pâtients with unrelievable suffering, thus providing an opportunity to test the competing views by comparisons with non-permissive jurisdictions.
Methods
In European jurisdictions with legal AD, using statutory longitudinal data for per capita general suicide and AD, we compare the trends in their respective prevalences. Trends in of general suicide in AD-permissive and neighbouring non-AD permissive jurisdictions are then compared. Confounding factors are considered.
Results
In Belgium and Switzerland (with high baseline general suicide rates), between 2000 and 2019 the rate dropped around 30%. In the Netherlands (with low baseline rates), it rose around 10%. Comparisons with neighbouring non-AD jurisdictions made interpretation more complicated. Important confounding factors could not be adequately controlled.

Conclusions
No consistent pattern emerges. Legal AD can at this stage not be shown to promote contagion or prevent suicide. Expected additional data from the Dutch and French-speaking halves of Belgium, with widely different rates of AD within a same jurisdiction, may shed more light on the issue.

Background:

Japan has entered an era of declining population. In order for people to be able to live their last days in their familiar communities happily, healthcare professionals alone cannot cope with this situation. Non-professionals are expected to be able to practice end-of-life care.

Objectives:

To reflect on the following practices. We developed an educational program to convey to non-medical practitioners the essentials of spiritual care needed to work with people in the final stages of life. We developed a system that promotes community development and continuous learning. The program then spread nationwide in a grassroots manner.

Design & Methods:

The five elements that define spiritual care and interpersonal support in hospice and palliative care were identified, leading to the creation of the concept of 'universal hospice mindset'.1. Listening with the awareness that people who are suffering greatly appreciate being understood (affirmative listening), 2. Inquire the person's suffering and resolve the suffering that can be resolved, 3. Inquire the resources that allows the person to be calm despite the suffering that cannot be resolved, 4. Strengthen the person's resources through dialogue, and 5. Know the resources of the caregiver himself/herself. An educational program has been created to learn these in a practical manner. We also provided support for community development that is based on continuous learning.

Results:

From 2015 to December 2023, 175 sessions were organized. The program had 8,292 participants. 55 communities were spontaneously created nationwide as a result of participants becoming facilitators. Voluntary workshops have been held nationwide in various communities, such as local communities, medical and social work professional education, and others. By combining the workshops with other study groups that are related to recent government promotions, such as Advance Care Planning, synergistic effects have been generated The hospice mindset can be practiced by anyone and everyone, and Lessons of Life programs for both children and adults have begun a trainer certification program.

Conclusion:

Learning communities have been created to practice the essence of spiritual care, and these communities are expanding their activities in partnership with various activities already existing in the community.

Background

Emilia-Romagna region in Italy promotes and supports, through the program called "2023 Social Innovation", private organisations and institutions who have projects involving satisfaction of social and health needs, also through the activation of new relationships, referring to certain communities of people/users/groups of individuals and/or to certain territories.

Objectives

Description of the project "Collaboration and prevention together : an innovative model of health", a proposal of joint-venture between private rehabilitation center and publich healthcare system for person-centered care program for patients with chronic diseas as cancer, cardiovascular diseaes, diabetes and neurological diseases.

Design

A rehabilitation medicine center in Ravenna, with the support of Emilia-Romagna region, will promote shared care pathways for people with chronic diseases as stated before , in order to implement personalized care pathways to improve both outcomes of quality of life and social connection

Methods

Patients coming from public health system facilities will have multi-professional evaluation: cardiology and rehabilitation medicine physician together with physioterapists with a degree in physical education and sport sciences will develop personalized goals and shared outcomes of care for the patient.

Results

"Collaboration and prevention together" program hopefully will achieve a virtuous cycle where patients with chronic diseases will have the opportunity to improve their health and quality of life, in a productive collaboration among Healthcare professionals, institutions and citizens.

Conclusions

Shared programs between public institutions and private healthcare organizations to promote public health outocomes in chronic diseases could be an innovative way not only to enhance quality of life of patients, but also to promote social connections and health education.

Background: To find out about the attitude of young people towards Palliative Care and Euthanasia a survey was conducted among upper class pupils in Vorarlberg. The school visit of a multiprofessional palliative care team was evaluated through a questionnaire.

Aims: By arousing interest for palliative care work, pupils should experience that assisted suicide is not the only answer to severe illness. The insight into the daily work of a palliative care nurse or a physician might influence the perception about Palliative care.

Methods: A questionnaire was filled out a week before (T0) and a week after (T1) the school visit of a palliative care team. The evaluation of the survey (partly questions that allowed personal comments, partly those with a rating scale) was done by the Vorarlberg university of applied sciences.

Results: A total number of 776 T0 and 516 T1 sheets were completed. The age of the pupils ranged from 15 – 21 years. 64% (T0) had experiences with loss. The question „Should assisted suicide only be permitted in individual cases?“ was rated by 41,3% students with „sure“ und „very sure“ in the T0 questionnaire. After the school visit this number increased to 48%.

The main associations with Palliative Care work before the lecture were death and dying, emotional drain and grief. After the visit these terms were chosen less often, but positive associations such as hope, symptom control, to live intensely, fulfilling work and humor gained numbers. The difference in all these terms was statistically significant.

Conclusion: An introduction into practical palliative care work showed a change in the attitude towards assisted suicide. The terms associated with palliative care modified after the visit: much more positive expressions like hope, symptom control and humor were mentioned.

Background: In Brazil, contact with palliative care and advance directives is limited during medical school, and palliative care was only incorporated into the medical curriculum at the end of 2022. Although advance directives are mentioned in the “Statute of the Elderly", they are not widespread and face barriers due to the taboo surrounding the approach to death. Therefore, the research question is: "Does the use of playful strategies help to simplify and expand the adoption of advance directives in Brazil?".

Objectives: To identify whether there are any playful strategies for dealing with advance directives, and to analyze their use, as well as the facilities and difficulties encountered in their use.

Design: The text was written according to the steps of an Integrative Review.

Methods: The study searched for articles in the BVS, Portal Capes, and Scielo databases, using the descriptors "advance directives”; "living will”, and "terminally ill”. 120 articles were found, of which 22 were selected after exclusion criteria and reading the full texts. Information from the website of the Brazilian Society of Geriatrics and Gerontology (SBGG) was also used.

Results: Given the global increase in the elderly population, the importance of respecting advance directives and principles such as autonomy and non-maleficence is evident. The actual implementation of advance directives faces legal challenges, a lack of knowledge, and prejudices about human finitude. SBGG has created an app to facilitate the elaboration of directives and launched a Portuguese version of the "Go Wish" game (2017). The "My Wishes" app (2020) aims to facilitate reflection and dialog about death-related wishes. At the end of the app, it generates an adaptable and shareable outline of the advance directives by guiding users through 5 steps. The "Cards on the Table" game consists of 36 cards, and it facilitates conversations about death-related wishes by categorizing them as: very important, more or less relevant and less important. It also has a special card for demands that are not covered.

Conclusion: About 4 years ago, the SBGG developed the "My Wishes" app and adapted the "Go Wish" game to simplify the discussion of advance directives. So far, there are no published results on the effectiveness of these approaches. Recent studies highlight the lack of knowledge on the subject, the need for specific legal regulation, and the urgency of cultural changes to overcome death-related taboos.

Background: Co-production of research aims to recognise the unique expertise of people with lived experience (PWLE) and integrate this knowledge meaningfully within the research. Recently, there has been increased co-production of palliative and end of life care (peolc) research. However, PWLE homelessness are rarely included in co-production of peolc research. Given the disparately low rates of access to palliative care services against the high level of need in this population, PWLE homelessness are a critical group to engage in co-production of palliative care research. The authors recently developed and published the TIFFIN guidance to support co-production of peolc research with PWLE homelessness, from which the current abstract stems.

Objectives: To provide a dual-perspective reflection on co-producing peolc research with co-researchers with lived experience of homelessness.

Design: This reflection forms part of a larger qualitative study.

Methods: We worked alongside an independent homelessness peer advocacy organisation in the UK to recruit a lived experience co-researcher. They were a member of the core research team, and co-developed study materials, recruitment of participants to the larger study (health and social care professionals and people with lived experience of homelessness). They also played a role in collecting qualitative data via interviews and focus groups, data analysis and dissemination of the findings from the qualitative study. Throughout the current study, there were two main forms of data collection: weekly one-to-one debriefs held between the PI and co-researcher, and reflective diary writing from the PI and co-researcher.

Results: Both debrief conversations and diary entries will be analysed using thematic analysis. This abstract will subsequently report on the experiences, successes and challenges of being and involving a lived experience co-researcher from a dual perspective.

Conclusion: Co-production of peolc research with PWLE homelessness is a crucial area, currently in its infancy. This study allows dual-perspective exploration of the experience of co-research in this field, to inform, improve and advocate for future co-production.

Background: The Family Planning Association of Nepal (FPAN), member association of International Planned Parenthood Federation, is a lead sexual reproductive health (SRH) service provider in Nepal. The maternal and neonatal health is integral part of the core programs and Minimum Initial Service Package (MISP) during humanitarian setting. FPAN ensures comprehensive SRH services through client-centered approach and well-trained service providers.

Objective: Ensure cancer screening integrated within the SRH service package for the earthquake affected indigenous tribal population of Jajarkot and Rukum West districts of Nepal.

Design: FPAN implemented three-month emergency response in two districts with the support from the SPRINT Project, providing promotive, preventive, curative and rehabilitative services including diagnostics on a range of essential SRH components.

Method: Coordination with the local government-rural municipal corporations, councils and partners for scheduling medical camps in hilly terrain and leveraging the community healthcare workers for generating awareness and mobilized communities for seeking SRH services were instrumental in increasing the reach during earthquake response. Considering this as an entry point and reaching the masses, FPAN service providers screened eligible women for cervical cancer using visual inspection with acetic acid (VIA) technique to identify high-risk positive cases, which are referred to higher centers for further management.

Results: Over 2,300 (male-356, female-1,944) clients benefitted with 18,802 SRH services, including gynecological-7,299, HIV-904, STI-6,683, pediatric-453, fertility-81, antenatal and postnatal care. Over 7,299 cancer screening services were provided including 1,310 cervical cancer using VIA, 463 breast cancer counselling, and 66 manual breast examination.

Conclusion

• Provision of integrated and client-centered approach for lifesaving SRH services to the crisis affected population.
• Awareness raising of the communities, especially vulnerable and marginalized groups on SRH.
• Strengthen the local institutional capacities and preparedness implemented in close coordination with the stakeholders for provision of comprehensive SRH services including cervical cancer screening.

Background

Emotions of all involved in the clinical encounter are at the core of the clinical care process. However, a gap remains in teaching medical students how to recognise and deal with their own emotions.

Objectives

This systematic scoping review aims to identify what approaches have been implemented in medical education programs to teach medical students the skills to identify and manage the emotions they may experience in the physician-patient relationship and in the clinical environment.

Design

This scoping review follows the updated JBI methodology guidance for the conduct and reporting of systematic scoping reviews, and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).

Methods

We developed a search strategy combining terms related to the population (medical students, trainees, or residents), exposure (medical education, teaching methods, (undergraduate) curriculum) and outcomes (emotion regulation, psychological wellbeing, mental health) and applied the terms to five databases. Initially, 6726 references were included for abstract and title screening, of which 716 full-texts were reviewed. Data from the final included studies (n>140) is being extracted for analyses. The extraction tool includes a combination of items from the TIDieR and the PAGER frameworks, along with additional variables added by the authors.

Results

Based on the data extracted so far, studies have employed a variety of designs including qualitative, quantitative, and mixed-methods, using diverse teaching methods including lectures, reflective rounds, or reflective writing. Delivery formats comprise different modalities, teaching various aspects of emotions and emotion skills such as the meaning of death for students, guilt, or shame. The studies have targeted medical students all the way from year 1 to clinical years, as well as samples mixing medical students from different years. Other studies have mixed medical students with junior doctors or with students from other professions (e.g. social work, nursing).

Conclusion

The results of this scoping review will provide a novel overview of teaching methods employed to prepare medical students to identify and manage their own emotions in the clinical environment. The results will also support the development and implementation of training programs.

Funding

This review is being funded by the Swiss National Science Foundation (SNSF).

Background: In Switzerland, an estimated 5000 children need palliative care. Prevalence or incidence on children and young adults in need of palliative care or mortality rates are difficult to obtain in Switzerland. A major obstacle to such data is the federal system of Switzerland, where each canton has its own healthcare system. It is assumed that only about 10% of the children and young adults needing pediatric palliative care (PPC) are currently receiving this specialized service in Switzerland.

Objective: The aim of this study was to determine the number of children with a life-limiting disease meeting the criteria for PPC who lived at home and were cared for by home healthcare in one of the German speaking cantons of Switzerland. The characteristics of these children and their families were described.

Design: A cross-sectional, retrospective study was conducted.

Methods: With the Start-Impact questionnaire, the PPC needs was determined of home-bound children cared for by home healthcare organisations in one of the largest German speaking cantons of Switzerland. This questionnaire comprises a rapid test and a main part. The rapid test includes seven items. By ticking each item, a total score of 4 can be obtained. If that’s the case, the main part has to be completed, which comprises seven areas with several items each. These items allow for clearly identifying the specific PPC need. The data was collected from the electronic documentation system of a total of five home healthcare organisations in this canton between January and June 2021.

Results: A total of N=108 children were identified who passed the rapid test. Most children (78%) had a low need for specialized PPC, 14% had a moderate need, and 8% had a high need. In the last group, 56% of the children did not have access to specialized PPC. Most of the children (91%) with moderate need of specialized PPC did not have access to it. For caregivers, the burden was high.

Conclusion: The burden of illness and care for children with specialized PPC need and their families is high. Access to PPC is inadequate. Care and treatment gaps in various areas exist. Establishment of a specialized PPC team is recommended. Further research is needed.

Background

Many individuals opt for nursing homes as their preferred place of care and death. However, nursing home staff face significant challenges in providing end-of-life (EOL) care; contributing to these difficulties are a lack of knowledge and confidence in end-of-life care. We postulate that a targeted education course to nursing home staff may help to overcome the gaps.

Objectives

To improve knowledge of EOL care and change attitudes of nurses and patient care assistants (PCAs) at a nursing home through an educational intervention.

Design

The intervention consisted of small-group teaching focused on end-of-life care within an institutional setting. It included six hours of teaching over three sessions. A multi-modal approach was used, including videos, case scenarios, didactic lectures, small group discussions, and hands-on exercises.

Methods

Before the course, a questionnaire was administered, which gathered demographic information, asked participants to rate their confidence, and tested their knowledge on EOL care. The same questionnaire was administered within a week after the course.

Results

Twenty-one nurses and PCAs attended the education course. There was an improvement in both knowledge and confidence in EOL care after attending the course. The greatest improvement was observed in PCAs and newer healthcare professionals. Correlation analysis did not find significant correlation between knowledge change and confidence.

Conclusion

The study demonstrated that an educational course effectively improves knowledge and confidence in end-of-life care among nursing home staff, with the most notable gains in PCAs and less experienced providers. However, the lack of significant correlation between knowledge and confidence suggests additional factors might influence care confidence. Future education could consider incorporating practice segments, such as bedside tutorials. This potentially bridges the gap between knowledge and actual care practices, and addresses individual learning needs of nursing home staff at different levels of experience. Ultimately, a customised and comprehensive educational program is essential to elevate the quality of end-of-life care.

Background

Palliative and hospice care in the Philippines has received increased attention recently, notably with the introduction of Republic Act 11223 or the Universal Health Care (UHC) Law in 2019. This law hopes to maintain the holistic approach in the continuum of care for patients from prevention to treatment, rehabilitation, hospice, and palliation. In preparation for UHC’s full implementation, healthcare workers must have the necessary skills, knowledge, and attitude to provide high-quality palliative and hospice care and integrate into local health systems to promote a multidisciplinary and interdisciplinary care approach.

This research study was supported by the Department of Health, Philippines.

Objectives

This study aims to assess the effectiveness of the Basic Palliative and Hospice Care Training Manual in improving the participant’s knowledge.

Design

The Basic Palliative and Hospice Training Manual was developed from May to November 2020 through training needs assessment, technical write-shops, and stakeholder consultations. This research study utilized quasi-experimental, pretest-posttest research design.

Methods

Due to the pandemic, blended learning design was utilized on its implementation last 23-27 November 2020, with 36 contact hours. The training was attended by participants from both health and non-health sectors (N=106). A 50-item questionnaire was given pre- and post-training. Pretest scores and Posttest scores were analyzed using Paired T-test to assess the effectiveness of the training.

Results

Only 80 out of 106 (75.47%) participants completed the pretest and posttest with t(79)= -13.771, p < 0.0005. In comparing the means of participants’ test results and direction of t-value, it can therefore conclude that there was a statistically significant improvement in participants’ test results following the conduct of basic palliative care training program, from 34.06 + 5.56 correct items to 43.03 + 5.03 correct items (p < 0.0005); an improvement of 8.96 + 5.82.

Conclusion

The Basic Palliative and Hospice Training Manual effectively increases and improves the participant’s knowledge of palliative and hospice care. Continuous course appraisal and evaluation are still needed to ensure its congruence with the current standards and evidence-based practice. With the results, conducting training in both public and private institutions is imperative.

Background: The Japanese government is promoting end-of-life care at home. Patients with cancer experience increased symptoms and a sudden decline in activities of daily living at the end of their life, making it difficult for caregivers to cope with end-of-life care. Hence, clarifying how these caregivers cope with end-of-life care and exploring strategies for supporting them are imperative.

Objectives: To identify the coping process of a caregiver providing the end-of-life care of a patient with cancer at home.

Design: Single-case qualitative research design.

Methods: Data were obtained from the field notes and group discussions of visiting nurses and were analyzed using the Trajectory Equifinality Approach. This study was conducted with the approval of the Ethics Committee.

Results: The participant was in her 80s who worked part-time for several years and cared for her husband with advanced cancer. Her husband was in his 80s and was sometimes hospitalized to the palliative care unit for his symptoms. The caregiver wanted her husband to stay hospitalized, but he preferred to die at home. The nurses informed the caregiver of the patient's condition and prognosis at each visit. They also updated the caregiver of his monthly, weekly, and daily progress until death via a pamphlet. The caregiver observed the patient's condition and reported his distress to the nurses, which prompted them to administer continuous subcutaneous morphine injections. The patient wanted his wife to continue working, to which she obliged. The nurses visited twice a day and began long-term home-care visits. The patient died at home 4 days after starting morphine. After 10 days, the caregiver told the nurses that being able to care for the patient at home while working was wonderful. She also stated that talking to her cat soothed her and that she would assume her husband's domestic roles, such as putting away the trash and newspapers.

Conclusion: The nurses informed the caregiver of the patient's condition, and helped her cope with her husband’s condition. Moreover, the nurses were able to appropriately relieve the patient's distress and increase the frequency of visits, allowing the caregiver to continue working. Such support may have helped the caregiver view the end-of-life care process positively and accept life without her husband.

Background

The digitization of society is accelerating; however, palliative care (PC) has been deemed less suited for digitalization, including videoconferencing. Among others, because of the appreciation for face-to-face contact between patients and health care professionals (HCP). Particularly in Switzerland, where geographical barriers to access care are relatively small, the need for digital interventions in PC might be too small for a successful implementation. Hence, we conducted an evaluation study in conjunction with the implementation of videoconferencing for round table meetings within our PC network.

Objectives

The objectives of this study are to show the experiences of health care professionals and patients with newly introduced digital round table meetings (DRT) in terms of (a) availability and needs, (b) feasibility and practicability, (c) accessibility and (d) general experience.

Design

Evaluation study

Methods

For our study, adult patients in PC with an indication for a DRT were screened. Eligible patients were German speaking had no severe cognitive impairment, already had at least one face-to face consultation with a PC specialist, needed to be either an inpatient with discharge plans or being cared for at home or in a nursing home. The only inclusion criteria for HCP was their participation in the DRT. The goal of a DRT is anticipatory care planning within the PC network.

Results

In total 66 participants were included in the study. Eleven DRT were conducted. The response rate was 83% for HCPs and 90% for patients. The number of participants per DRT varied between 3 and 9 people. Nineteen of the HCP (46.3%) took part online. Overall, the HCPs were satisfied with the DRT, with 66.7% rating them as "rather good" or "good". The HCPs felt that the DRT added value to the outpatient care of palliative patients (five-point scale, the median 4.0 IQR (4-5)). When HCP (n=7) reported that the opportunity to interact with the patient was poorly, patients still reported that they felt that they could address their important issues.

Conclusion

The DRT were perceived as good by the HCP and patients, even if technical challenges hindered the accessibility in certain cases. DRT can be a valuable additional support to face-to-face contact in PC. We advise further implementation of the DRT in our local network, after adjusting for some of the identified implementation barriers.

Background: Pediatric palliative care (PC) is primarily centered around enhancing the quality of life for children facing life-limiting illnesses and their families. Some common illnesses utilizing pediatric PC include congenital anomalies, neurodegenerative disorders, genetic syndromes, and cancer. Pediatric PC research identifies gaps in current care approaches, promotes evidence-based interventions, and encourages the integration of PC into standard pediatric healthcare. There is a body of knowledge regarding PC among adults, but it is scarce when coming to pediatric PC.

Objectives. To examine trends of PC among children with life-limiting clinical, as well as sociodemographic and clinical factors associated with PC.

Design. The 2016-2020 national inpatient sample (NIS) were used in this pooled cross-sectional study.

Approach. A total of 684,746 hospital discharges under 18 years old with life-limiting conditions were analyzed. Use of PC, mortality, and LOS, as well as associated sociodemographic factors were examined.

Results/Findings. Neurologic/neuromuscular, cardiovascular, and premature/neonatal conditions were ranked in the top three of all pediatric conditions that may need PC. Use of PC increased from 1.47% in 2016 to 1.80% in 2020, with an average 7.8% annual increase in the odds of receiving PC. Females (odds ratio (OR)=1.06 as compared to males), uninsured (OR=1.73 as compared to patients with private insurance), and patients living in low-income areas were more likely to receive PC. Children with a higher level of severity of illness (OR=2.54 per level of increase), including neurologic/neuromuscular (OR=2.63), and malignancy (OR=3.29), tended to receive PC. Children residing in rural areas were less likely to receive PC (OR=0.51 as opposed to patients living in non-rural areas). Children receiving PC were much more likely to die in hospital (OR=23.16) and to incur a longer hospital stay than their counterparts without PC.

Conclusions and Application to PHPC. Pediatric inpatient care increased from 2016 to 2020. Hospital PC was associated with severe clinical conditions, uninsured, rural residence, in-hospital death and LOS. Better health insurance compensation on PC and earlier referral to PC for hospitalized children with life-limiting conditions may improve their quality of life and disease management.

Background: In advanced cancer support from peers, who have experiential knowledge of and experience with the consequences of living with cancer, may increase resilience and improve quality of life. Peer support includes informational, emotional and appraisal support. The "Living with Cancer" programme is a peer-led peer support programme for persons living with advanced cancer and relatives of those persons. Participants join six weekly video-conferencing group meetings of 1,5 hours per session, guided by a trained peer-facilitator.

Objectives: The aim of this study is to find out how peer support is expressed in the ‘’Living with Cancer’’ programme.

Design: In this observational study the video recordings of the meetings were used to retrospectively observe and analyse the behaviour and interaction between participants and facilitators.

Methods: A total of 26 meetings were analysed, from 11 different groups. We used a literature based framework, clarifying existing types of peer support to develop a coding scheme for data extraction. Deductive analysis was performed and codes and quotes were arranged thematically.

Results: Peer support occurred in different types of interaction: from participant to participant (patient- relative; patient - patient and relative-relative) and from facilitator to participant (both script based and peer based). Most frequent observed peer support was informational support, such as sharing relevant knowledge and sharing alternative courses of action. Appraisal support was expressed in encouragement to persist in problem resolution and positive reinforcement upon achievement. Emotional support was reflected in expressions such as : ‘caring’, ‘provide reassurance’, ‘being empathetic’ and ‘being respectful’.

Conclusion: This study shows that the online ‘’Living with Cancer’’ programme, in which persons living with advanced cancer and their relatives participate in video-conferencing group meetings, enables participants and facilitators to share their experiential knowledge and support others in various ways.

Background

A desire to die is common in seriously ill people, but health professionals often express uncertainty in dealing with it appropriately. Therefore, a multi-professional two-day training program was developed and evaluated to teach self-confidence, knowledge, skills and an attitude in dealing with desire to die. Seriously ill people also express their desires to die to hospice volunteers and (caring) relatives. Due to their closeness to those affected, these two groups may be particularly challenged in dealing with desires to die.

Objectives

To identify the special needs of relatives and hospice volunteers in dealing with desires to die and to develop suitable training and information services.

Design

Qualitative needs assessment.

Method

Focus groups and individual interviews with hospice volunteers and relatives (representatives); based on the insights gained, development, and piloting of target group-specific face-to-face and online formats.

Results

A focus group was conducted with hospice volunteers (N=6) and another with relatives' representatives (N=4), as well as supplementary individual interviews (N=2) with relatives' representatives.

The first focus group revealed a special role for hospice volunteers. They are neither part of the family system nor of the full-time care, they contribute a lot of time and have no therapeutic mandate. Hospice volunteers wish for training courses that focus on their special position, to use language that was understandable to laypeople and preferred face-to-face to online formats.

For relatives, it emerged that, on the one hand, it is important to reflect who really has a desire to die and specifically for whom. In addition, relatives experience particular burdens that result in their own need for support. They wish for short online information and exchange formats in which desire to die could be discussed as neutrally as possible.

Based on these results, the existing training program was adapted for hospice volunteers and a digital two-hour format for relatives was developed, piloted, and evaluated.

Conclusion

During implementation, there was a great demand for different (and differently long) formats, especially among hospice volunteers. Relatives initially appeared to be more difficult to reach, but the mediation by self-help groups revealed a great need for information and exchange on the topic.

Introduction

Family ties are very strong in India. Every member take part in decision making and their views are considered. All members of the family come to know about the diagnosis first except the patient and they decide whether they want to divulge the truth to the patient or not. In almost all cases, the family members do not let the patient know. According to medical ethics, patient has the right to know about his disease and the status and our study is to find out the views of the family members about disclosing the diagnosis and disease status to patient.

Materials and Methods

The study was conducted in a tertiary cancer centre in North East India. Patients in the age group of 18 to 60 years, having cancer diagnosis but without any metabolic disease were selected. They were selected randomly during their first visit to the palliative care unit and family members were informed about the study. Eligible and consenting relatives in the age group of 18 to 60 years were asked to answer a set of questions in the line of SPICE questionnaire.

Results

A total of 19 patients’ relatives were interviewed. From the patients’ perspectives – most of them wanted to know the diagnosis (13 out of 19)(68.4%). But 9 out of 19 relatives (47.4%) did not want to let the patient know the diagnosis. 10 out of 19 relatives (52.6%) wanted to disclose it citing various reasons like – patient has the right to know (20%), patient is capable enough to decide about the future (10%), better to give the right information rather than false hope (20%), patient has to undergo all the treatments by himself (30%) etc. Relatives do not want to disclose because – patient will psychologically break down (44.4%), may loose hope and willpower (22.2%), may be harmful for the patient and the whole family (22.2%), patient want to live longer and do not want to discourage (33.3%) etc.

Conclusions

Several views expressed by relatives in disclosing the diagnosis to patients. It is important to talk to the relatives first to break the collusion. It is essential to tell the truth to the patient to maintain a good doctor and patient relationships.

Keywords

Cancer, disclosing diagnosis, family member views.

Conflict of Interest and Funding: None

Background In many developed nations, an ageing population, patterns of health trajectories, and accessible options for end-of-life care influence what is possible for what and where palliative care is provided. Experiences of and preferences for giving and receiving care can differ markedly and are impacted by cultural and familial beliefs and expectations, and unexpected ramifications of illness (e.g., symptom management, length/intensity of care requirements, and financial costs).

Objectives To document how, why, and what decisions a dying person and their carers make about how, where, and what care is provided in the last year of life; and, identify the precursors to, moments of, and consequences of (changing) decisions regarding care.

Design Prospective 3-year longitudinal mixed-methods (data collected at 12-weeks intervals) study with a cohort of people living with a life-limiting illness and declining health, and their carers (typically family) from communities known to have limited access to palliative care—rural, low socio-economic, or non-English-speaking origin communities.

Methods We have begun recruitment and engagement with 40-64 patient-carer units, within communities, residential aged care facilities, and acute care settings. Quantitative analysis will use a multilevel modelling approach to identify variation in factors (e.g., location, ethnicity, gender, psychosocial status) associated with change within and between patient-carer units in self-report surveys (measuring performance status, care needs, quality of life, psychosocial wellbeing). Qualitative data (e.g., interviews, videos, photos, pictures) will be thematically analysed within a pragmatist orientation, focusing on implications for clinical practice and policy for end-of-life and bereavement care.

Results We present preliminary findings about the last year of life and into bereavement on a) behaviours, experiences, and key moments, shaping how and why people from under-served communities make decisions about care; and b) changes over time in expectations and experiences, challenges and benefits, needs, expected futures and factors associated with a change in experience and/or expectations of providing or receiving care.

Conclusion We present preliminary observations and recommendations to inform the development of resources to ensure timely provision of information to, and support for, patients, families, and carers negotiating and living with decisions about care at the end of life.

Background

In Jan 2019, Taiwan officially approved the Patient Autonomy Law (PAL) which allows all citizens in Taiwan to make advance decisions (AD) for 5 critical conditions. According to the law, all citizens wishing to make an AD must go through official advanced care planning (ACP) performed by certified healthcare professionals (HCP). However, the public awareness is relative low especially for college students.

Objective

The objective of the study is to evaluate the reflection from college students after a designed interactive speech of advance care planning.

Design

This is a qualitative study with theme analysis by artificial intelligence.

Methods

We designed a two-hour interactive speech of advance care planning especially for college students. The program was promoted by website and all university in Taiwan could apply for the speech as long as there are more than 100 participants per speech. The speech was then provided for free by Dr. Wei-Min Chu, who is a palliative care physician and also a medical educator, for selected universities. After speech, each students was given a “reflection card” and told to leave words of reflection after the speech. We used ChatGPT by OpenAI for theme analysis of all collected reflection cards.

Results

In 2017-2018, 20 universities in Taiwan applied for the speech. A total of 2160 reflection cards were collected after the speech. The theme analysis of the students' reflections on the speech about advance care planning revealed several common themes across five identified topics, including Gratitude and Appreciation, Advance Care Planning Awareness, Emotional Reflections and Personal Growth, Acknowledgment of Healthcare Professionals and Expressions of Love and Regret.

Conclusion

The results of our study showed that a designed interactive speech of advance care planning could be an informative and motivative tool for college student to promote public awareness of advance care planning. Also, a artificial intelligence approach is useful for theme analysis.

Background: Palliative care is interdisciplinary care that focuses on improving the quality of life of patients diagnosed with terminal illnesses. Primary palliative care differs from sub-specialist palliative care in that primary palliative care is conducted by primary care physicians who integrate palliative care into their clinical practice. The goal of primary palliative care is to bridge the gap between primary care physicians and palliative care subspecialists so the patient can receive basic palliative care services. Current research in this area suggests that primary care physicians’ knowledge of primary palliative care is lacking.

Objectives: This study aims to evaluate American primary care physicians’ level of knowledge regarding primary palliative care.

Design: This cross-sectional study used a validated digital survey, the Palliative Care Knowledge Test (PCKT), to determine physicians’ level of knowledge regarding primary palliative care. The domains included on the PCKT include philosophy, pain, dyspnea, psychiatric problems, and gastrointestinal issues.

Methods: The inclusion criteria for participants were that they must be English-speaking primary care physicians (family practice physicians, internal medicine physicians, and psychiatrists) in the United States.

Results: The survey was distributed to 3,221 primary care physicians in the United States. 53 responses were generated, resulting in a response rate of 1.3%. The average score for the philosophy category was 92% with a standard deviation of 21%. For pain, the average score was 70% with a standard deviation of 16%. For dyspnea, 85% with a standard deviation of 19%. The average score for psychiatric was 52% with a standard deviation of 22%. Lastly, the average score for GI was 71% with a standard deviation of 22%.

Conclusion: This study identified areas of primary palliative care in which primary care physician knowledge was lacking. Subsequent studies that take measures to increase response rate could provide valuable information about the current state of primary palliative care education. This data could be used to create a curriculum that could be integrated into medical training.

Funding: Special thanks to UCF Office of the Associate Dean for Faculty and Academic Affairs for funding this study.

Background

Dementia often precipitates societal stigmatisation and exclusion, underscoring the urgent need for dementia-friendly communities. Embracing a public health approach to dementia includes adopting a life-course perspective to enhance overall societal awareness of dementia. This scoping review focuses on adolescents as critical contributors to developing supportive communities for individuals living with dementia. Currently, there is a paucity of evidence in this area.

Objectives

This scoping review represents a novel effort to identify and synthesize extant literature on the knowledge and attitudes of adolescents regarding dementia.

Design

A Joanne-Briggs Institute scoping review.

Methods:

Four bibliographic databases—MEDLINE, PsycINFO, EMBASE, and CINAHL—were searched. Inclusion criteria encompassed qualitative and quantitative studies exploring the knowledge and attitudes of adolescents (aged 10-19) toward dementia. Rigorous screening processes were applied, utilizing JBI tools for data extraction. The synthesis reported i) adolescent knowledge and attitudes and ii) interventions.

Results:

The review included 19 publications, which revealed that adolescents possess relatively limited objective knowledge of dementia. Despite this, their attitudes generally tend towards neutrality or positivity. A notable finding is that adolescents with familial exposure to dementia often held predominantly negative attitudes. The presence of family members with dementia alongside gender emerged as influential factors shaping both knowledge and attitudes. Particularly promising were interventions involving direct interaction with individuals living with dementia, indicating a potential avenue for public health-driven initiatives to enhance attitudes and awareness.

Conclusions:

This review contributes to a growing body of literature on adolescent knowledge and attitudes towards dementia. The findings underscore the importance of a public health approach in shaping adolescent attitudes as a crucial step toward creating dementia-inclusive communities. By integrating adolescent perspectives into public health strategies, we can collectively work towards fostering understanding, reducing stigma, and building a more compassionate and informed society.

Background: Patient-reported outcome measures (PROMs) with robust psychometric properties serve as valuable tools for informing health and care decision-making. In cost-utility analyses, health outcomes are typically measured using health-related quality of life instruments. However, the scope of holistic palliative and end-of-life care extends beyond health, including additional value dimensions. The ICECAP-Supportive Care Measure (ICECAP-SCM) aims to address this need, representing a recently developed capability-wellbeing measure with seven-attributes tailored for economic evaluations within palliative and end-of-life care settings.

Objectives: This study aimed to assess the psychometric properties of the German ICECAP-SCM.

Design: A multicenter cohort study of patients with palliative care needs admitted to specialized palliative care wards in 12 Austrian hospitals between October 2021 and April 2023.

Methods: In addition to the ICECAP-SCM, we assessed health-related quality of life (EQ-5D-5L) and the Integrated Palliative Care Outcome Scale (IPOS), a PROM to assess symptoms and other concerns of palliative care patients. We assessed the convergent validity, discriminative validity, structural validity, and responsiveness of the ICECAP-SCM.

Results: 228 patients completed all three PROMs and were included in the analysis. Correlation (r) between the ICECAP-SCM summary scores and the IPOS summary scores or the EQ-5D-5L summary scores was similar, -0.32 and -0.27, respectively. The IPOS summary scores and EQ-5D-5L summary scores showed significantly stronger correlation (r = 0.48). Two strong and eleven moderate correlations were found between ICECAP-SCM attributes and items from other measures. The ICECAP-SCM Emotional Suffering attribute correlated strongly with the IPOS Depression item and the EQ-5D-5L Anxiety/Depression item. Other validity tests are currently ongoing.

Conclusion: This study provides initial evidence of the validity of the ICECAP-SCM capability-wellbeing measure in specialized palliative care wards in the hospital context. Overall, the results suggest that the constructs of IPOS and EQ-5D-5L are more closely related than those of the IPOS and ICECAP-SCM. This is likely to lead to potentially important conflicts between purposes such as clinical actionability, quality assurance versus usefulness for broader value assessment.

Funding: The Austrian Science Fund (FWF) Lise-Meitner program (M2795)

Background

Cardiovascular diseases (CVD) are the most common cause of death globally, as in Sweden, often with high symptom burden. Despite this, palliative care is underutilized. A marker for the quality of end-of-life palliative care in a country is globally accepted to be death in the preferred place, considered by many to be their own home. This quality indicator could be indirectly affected by emerging policies that shape health care services.

Aim

The aim was to examine trends in place of death among adults with CVD, after the first national guidelines for palliative care were launched 2012-2013 in Sweden, and examine potential associations to individual, clinical, geographic and socioeconomic factors.

Methods

Population-level longitudinal trend study based on registry data of adults deceased due to CVD (n=209 671) between 2013 and 19. Logistic regression, with place of death as dependent variable, and interaction analysis was applied to explore associated factors and variation in place of death.

Results

Overall, the predominant place of death was nursing home (39,1%) and hospital (37,6%), followed by home (22,0%). From 2013 - 2019 hospital deaths decreased by 3,0% and home deaths increased by 2,8%. This trend was seen in all six regions, most pronounced in the Southern. If living at home, the likelihood of dying in hospital versus home decreased from 2016 to 2019 (OR 0.82). Over the study period, an increase in home deaths was seen in all individual CVD types (+1.5-5.7%), and a decrease in hospital deaths (-2.0-8.5%) in all but cerebrovascular disease (+1.3%). Significant factors associated with dying in hospital versus home for home dwellers were having the ICD-code for palliative care (OR 2.21), potential palliative care needs (OR 2.19) and age > 80 (OR 1.87). Only 2.2% died in a specialised palliative care setting and 2.7% had the ICD-code for palliative care, whereas 94.2% were estimated to have potential palliative care needs.

Conclusion

From 2013-2019 people dying due to CVD in Sweden do so to a slightly less degree at hospital and more often in their own home, independently of health care region and (most) CVD types. Yet only a minority (22%) die at the presumed preferred place of death; one's own home. A plausible reason could be that only 2.2% of the total CVD population receive specialised palliative care at death, despite 94% having potential palliative care needs. This warrant attention to policy and clinical practice as well as further studies.

Patients and family members, including friends are seen as the ‘unit of care’ in palliative care. Best care for the dying patient, therefore, is achieved by offering optimal support for physical, psychosocial, and spiritual suffering to all persons involved in these often highly distressing situations. This study is part of a large international cohort study within the EU-funded ‘iLIVE-project’.

Aim: The aim of this study was to identify, from the perspective of families and patients, what are the aspects and goals of care which are most relevant in the last days of life.

Method: We collected data on outcomes from the perspective of patients and families prospectively and longitudinally answering to the open ended question: “What aspects of care would matter the most to you if your health (or of the relative) irreversibly worsened and death neared?. For this part of the study, we included data from participants who were in the last month of their life from the Netherlands, UK, Germany, Slovenia, Switzerland, New Zealand, Norway, and Argentina.

Results: We analysed data for 108 patients, provided by 101 patients and 37 relatives. Patients were in average 70 years old (range 42 - 94), 52% were men, and over 90% had cancer. From the patients and relatives, we obtained 138 responses, which included 584 outcomes (198 unique). The most common outcome of both groups was ‘having the constant companionship from family and friends’, followed by ‘pain management’, ‘being pain free’, and aspects of ‘personal hygiene’. Looking at each group independently, for patients, the main aspects remained as before, with the exception that ‘being sedated’ came before ‘personal hygiene’. For families, when thinking of the patient, ‘medical care with humanism’ was added. When thinking of themselves, families wanted ‘constant companionship to patient’, ‘good communication with health personnel’, ‘pain management’, ‘professional support’, ‘psychosocial and emotional support’, and ‘medical care with humanism’.

Conclusions: Our data provide an insight into the preferences from the perspective of the ‘unit of care’ about what matters most during the last days of life, not only with a focus on patients but also on the needs of family members. While these aspects remain the focus of professional care, they are rarely clearly voiced and requested as essential to high quality care for every dying person, in all care settings.

Background: Advance care planning (ACP) is intended to assist individuals in articulating, discussing and documenting their future medical care goals and preferences. Existing evidence has reviewed barriers facilitators and benefits for ACP. However, a recent editorial exposed a potential disparity between the intended outcomes of ACP and its actual impact, highlighting a potential rift between theoretical ideals and real-world decision-making. This lack of clarity is occurring despite a high level of financial investment into ACP through grant funding, relative to other areas of palliative care.

Objectives: To explore how current ACP interventions are evaluated in systematic reviews globally, including whether those identified are achieving their intended outcomes.

Design: A meta-review of existing systematic literature reviews.

Methods: Keyword searches across five electronic databases identified key systematic reviews for inclusion. To be eligible for inclusion, papers must report a review of any design, include discussion of an ACP intervention (including any global term for any ACP intervention) and its outcomes for adults with advance illness. ACP outcomes for this review are informed by a 2018 Delphi study, summarising ‘outcomes that define successful advance care planning’. Two Patient and Public Involvement representatives form a core part of the research team; their involvement includes protocol development, abstract writing, screening, and future data analysis. Their involvement is planned and tracked through the PIRIT tool.

Results: Database searches identified 1552 potentially eligible records. At present, 74 full texts are being screened. The full protocol can be found on PROSPERO. During the conference we plan to be able to present analysis addressing the following research questions:

1. How are current ACP interventions evaluated?
2. Do current evaluations suggest that advance care planning is achieving its intended outcomes?
3. Do the above results differ by population?

Conclusion: By consolidating global review evidence, this meta-review has the potential to provide more comprehensive understanding of current achievements, remaining gaps and challenges of ACP. This enhanced insight can better inform the direction of research and funding, aiding health and social care professionals to meaningfully utilise ACP interventions for better end of life care.

Background and objectives

Death is a universal experience; we created a course on “we all die, but how we die- that is the question”. In this idea, a concept like empowerment is at the center of the approach – this approach is due to societal attitudes changes (Catford, 2018). Palliative care nursing focus for example on compassion care, dignity care and gratitude, however healthy dying is still new in the practice. Nurses have a key contribution to progress the community's perspective on healthy dying, through their role as care coordinators (Abel, 2018).

The aim of the poster will be to illustrate the approach of an optional course in nursing training on healthy dying from a community health perspective. We will present the content of the course and the reflections we had about “social representations”, “health promotion and death – what synergies” and “community care and healthy dying”.

Design and Methods

Creation of an optional teaching module as part of the final year of the Bachelor's degree in Nursing at HES-SO University of Applied Sciences and Arts Western Switzerland-Fribourg, using a health promotion and patient-centered approach to give students a change of perspective.

This module will be conducted over 5 days (1 week). It will start in January 2025 and will have three objectives:

• Conceive the link between health promotion and death, in particular by being able to explain the concept of "healthy dying" and "community care".
• Reinforce, in the context of palliative care, one's health promotion posture by developing a project.
• Develop a relational approach to health with the person in palliative care, in relation to bereavement and end-of-life issues.
• Examine the evolution of one's representations of death and health.

Results

In this course, students are divided into groups and are invited to carry out a reflection on a clinical vignette with a specific health dying context (nursing home, home care, community care, hospital).

This project-based approach enables the empowerment of their health promotion posture and a reflection around death and the patient needs. To encourage their success, the lessons give some information on the health systems partners and the state of the art of contextual practice of healthy dying.

Conclusion

The presented course on healthy dying gives the opportunity to empower nurses and patient needs.

Background: This is a follow-up study based on caregiver's description of their spiritual well-being as related to home care management for patients with deteriorating heart failure (HF), dementia, and palliative care needs. Dementia and heart failure (HF) are the most common co-existing end-of-life conditions among older adults requiring extensive home caregiving. Spiritual well-being sustains family caregivers during times when their loved ones are experiencing deterioration, entering palliative care, and facing death. The rural Appalachian population values spiritual well-being.

Objective: This study aimed to assess the factors impacting the spiritual well-being of caregivers in the rural Appalachian region.

Design: This study used a descriptive correlational design. Caregiving Preparedness Model is used to guide this study.

Methods: Data was collected from adult caregivers (N=20, age 18 and older) of loved ones with the diagnosis of HF and dementia (age 55 and older) in Rural Appalachia. A multiple regression analysis was performed on caregivers’ spiritual well-being scores as the dependent variable. Factors impacting caregiving: 1) caregivers’ preparedness for HF and dementia home care and 2) patients’ physical, emotional, and palliative care needs were the independent variables.

Results: The average age of these family caregivers was 64.95 years (SD =12.42). The average length of home caregiving for HF was 6 years (SD = 4.97) and 4.29 years (SD = 4.82) for dementia These caregivers median score on the spiritual well-being scale was 32.5 out of 45. In the regression analysis, a large amount (53%) of variance in spiritual well-being was explained by caregivers’ greater preparedness for HF and dementia home care (β = .53, p < .01) and by informational communications about caregivers’ practical palliative care concerns (β = -.70, p < .05). These caregivers age, years of caregiving, and patients physical and emotional status did not statistically contribute to caregiver spiritual well-being.

Conclusion: This data supports nurse-led interventions for HF and dementia home care preparedness. Regardless of caregivers’ age, years of care, and health status, nurses can communicate information on managing in-home care practical concerns. Nurses may also support caregivers’ spiritual well-being by increasing caregiving preparedness by holding supportive caregiver discussion groups and setting up home visits and telephone contacts with their spiritual advocates.

Background: Compassionate Communities can be challenging to evaluate as a complex health and social intervention. This is particularly true for community-based or non-profit organizations, whose resources and assessment capabilities vary widely. A guide has been developed to increase evaluation capacities for such organizations by providing them with a step-by-step checklist and the necessary tools for their work. The Compassionate Community Evaluation Guide has been designed to support the self-assessment of an individual activity, a project, or a program within an initiative.

Objectives: The presentation aims to demonstrate how to use the Guide to create and administer evaluation plans for compassionate communities’ initiatives at different development stages.

Design & Methods: Over five years, the Pan-Canadian Compassionate Communities Evaluation Project, which is a collective effort between Pallium Canada, BC Centre for Palliative Care, Hospice Palliative Care Ontario and leaders dedicated to palliative and end-of-life care, has resulted in the publication of an evaluation guide for compassionate community initiatives. The development process for the Guide included various consultations with community members working within the Compassionate Community space, or anyone aiming to support caregivers, those grieving and/or dealing with a serious illness. These consultations influenced the creation of a Canadian definition, stages of development, evaluation framework and, ultimately, the Guide. Through an academic-community partnership, the self-funded evaluation guide and associated tools have been pilot-tested before the release of the final version.

Results: As a result, the Guide shows, step by step, how to develop an evaluation plan and what to look out for in each development stage. It provides an evaluation framework promoting the use of common evaluation questions and measures across different Compassionate Community’s initiatives and stages of development. The Guide also provides evaluation tools, resources and printable materials to support evaluation capacity at different levels.

Conclusion: The Guide is a free ready-to-use resource for anyone who wants to measure and track the progress of their Compassionate Community’s initiative seamlessly, regardless of their level of knowledge and experience of evaluation methods.

Palliative care development in Thailand was classified into the 4a level while it has been ranked 36^th of 81 countries on Expert Assessments of the Quality of Death and Dying. Community-based palliative care is recommended to improve the accessibility of palliative care provision. The objectives of this research were to describe the current palliative care provisions that were implemented and to identify gaps by comparing them with evidence-based best practices recommendations.

Design Case Studies

Method Research settings included 4 provinces in Regional Health 12. Participants were stakeholders involved in palliative care. The total number of informants is 252 persons. In-depth interviews, participant observation, and group discussions were used to gather data. 213 patients and caregivers who received palliative care services were asked to complete the self-perceived quality of palliative and end-of-life care questionnaire. Data were analyzed using content analysis and descriptive statistics.

Results Current practices to promote good living and good dying through palliative care services in the community can be classified into hospital-based palliative care and integrated community-based palliative care. The perceived quality of palliative and end-of-life care in the patient sample was at a high level in all aspects, except in care during the dying phase, which was at a moderate level. Meanwhile, the caregiver samples were at a high level in all aspects, except for bereavement care, which was at a moderate level. The results of the gap analysis include affordability of care, availability of medicines and medical equipment and supplies, palliative care education and training, human resources and, community participation.

Conclusion Findings from the study highlight the strengths of the leadership and health service network team in the palliative care operations of Health Region 12. However, there are areas for improvement and challenges. Recommendations for promoting good living and good dying in communities will be addressed.

No Conflict of Interest

National Health Commission Office granted research funding.

INTRODUCTION

The municipal administration, the associations present in the area that deal with chronic conditions, palliative care, disabilities, cultural projects, and education have supported the creation of a compassionate city that uses a model of narrative medicine, unique on an international scale, built on the philosophy of palliative care, but applicable to citizenship.

GOALS

Building a compassionate city that uses narrative medicine as a structured model and improves awareness and knowledge of issues related to death, the end of life, care, fragility, enhancing the dignity of the person.

DESIGN

The process of building the compassionate city, using a narrative medicine model for palliative care, began on February 1, 2024.

The first year will be dedicated to the following activities: the construction of the first nucleus of the compassionate city network through dissemination, training and information events with narrative methods; practical activity linked to the application of narrative medicine to improve people's quality of life; the creation of a formal document of the birth of the compassionate city and becoming part of the network of compassionate cities.

METHODS

The program began with meetings between the municipality and the associations that participated; data on the use of narrative medicine in palliative care on people in hospice and followed at home in the year 2023 were presented; the values ​​and objectives to be achieved have been defined; the concrete actions to be implemented have been identified

RESULTS

The results that we want to achieve by February 1, 2025, are the following: Establish the first compassionate city that uses a narrative medicine model in palliative care; Extend the use of the narrative medicine model for palliative care to citizens; Administer, during narrative medicine activities, a questionnaire on how people feel supported by the community in which they live; Work to implement the Compassionate City in the years following the first

CONCLUSIONS

What made the process of building a compassionate city in our territory possible was the recognition of the importance of compassionate cities and narrative medicine in palliative care. Narrative medicine creates a bridge between people and institutions

People, including professionals, through their narratives, become active protagonists of the treatment process and feel free to talk about death, illness, fragility.

Background

The inclusion of palliative care in policy has been encouraged internationally, and gradually implemented in Sweden. Previous research shows differences in care at the end of life between different severe chronic conditions as well as between different cancer types. Care is driven by policy and to the best of our knowledge the inclusion of palliative care in Swedish policies has not been systematically reviewed previously.

Objectives

The objective of this study was to examine how palliative care is included in Swedish national disease-specific policy and guideline documents to illuminate prevailing ideas and assumptions regarding palliative care.

Design

Document analysis.

Methods

A document analysis of Swedish policy and guideline documents for care of different disease-specific groups (severe chronic conditions; cancer and non-cancer) was performed. In total 141 documents were analysed for descriptions referring to palliative care.

Results

Large variations were identified in the ways palliative care was included in the policy documents, and it varied from mentioning the term without explications to elaborations of palliative care practice. Further variations encompassed disease-specific palliative treatments (e.g. anti-tumoral treatments), care of the dying, referring to established definitions (e.g. WHO:s definition), an integrated care approach, and family support.

Conclusion

There are large variations in how palliative care is included in Swedish national disease-specific policy and guideline documents. The inclusion of palliative care is limited to disease-specific palliative treatments and care of the dying person, which delimits its scope in ways that are contrary to current evidence for early integrated palliative care. A lack of palliative care recommendations adapted for each specific diagnosis indicates a gap in policy. The current ways of including palliative care in national policy documents needs to be acknowledged and discussed to promote facilitation of equal access to palliative care across diagnoses.

Conflict of interest and funding

The authors have no conflicts of interest to declare. This study was funded by grants from the Swedish state under the agreement between the Swedish government and the county councils, the ALF-agreement (ALFGBG-965941), The Swedish Cancer Society (21 1580 Pj 01 H), and X university, Stockholm Sweden.

Background

The research evidence base on bereavement support interventions is underdeveloped. Moreover, components of existing bereavement support interventions rarely map to the modifiable risk and protective factors for complicated grief. This presents uncertainty on the best model of care aligning to a public health approach to bereavement support. Arts-based therapeutic approaches, and notably music therapy, may be particularly useful in addressing the risk and protective factors of complicated grief. The current research in this area is however disparate and disconnected, with the need for a comprehensive review.

Objectives

To synthesise and critically evaluate the international evidence base for music therapy with adult informal carers of individuals with life-threatening illness at pre- and post-bereavement, and to map components of existing interventions on to established risk and protective factors for complicated grief.

Design

A Joanne-Briggs Institute mixed-methods systematic review.

Methods

Databases (MEDLINE, EMBASE, PsycINFO, RILM Abstracts of Music Literature, CENTRAL and CINAHL) were searched from 1998 to July 2022. The quality of both quantitative and qualitative studies was assessed using critical appraisal tools and data extracted. Quantitative data were described narratively and qualitative data were pooled using meta-aggregation. Synthesised findings were mapped to established risk and protective factors for complicated grief.

Results

A total of 34 studies were included in the review, published between 2003 and 2022. The quality of the quantitative studies was low-medium, with a higher quality of qualitative research identified (medium-high). Synthesised findings of outcomes and mechanisms of change mapped across established risk factors for complicated grief such as depression, anxiety, family conflict at end-of-life, poor perceived social support, early non-acceptance of loss, and difficulty accessing positive memories; and protective factors including higher spirituality, participating in work, and perceived preparedness for death.

Conclusion

There is a dearth of high-quality clinical trials in this area, which limits the conclusions which can be drawn on the benefit of music therapy as a bereavement support intervention. However, the rich qualitative research in particular identified mechanisms of change in existing interventions which mapped to a myriad of risk and protective factors of complicated grief.

Material Legacies is a five-year collaboration with The Hospice of St Francis, UK that uses practice research methods to co-create a collection of experiential artifacts, four documentation films, a series of specialist talks and two public exhibitions with three bereaved makers. This research creates novel practices that redefine the role of artistic collaborations with the bereaved, creating alternative spaces for a person’s physical and digital legacy.

The research aims 1.to explore how collections of things (objects and data) can be used as material to embody the relationship between the living and the dead 2. to use co-design, situated design and exhibition design to flatten hierarchies and provide a framework for studio making within these sensitive contexts 3. to reflect on the context between palliative care, art therapy and design in relation to the bereaved and their archives.

Material Legacies locates its approach to bereavement within continuing bonds theory, where the bereaved may explore a continued relationship with the dead (Walter, 1996). The narrative turn within hospice care (Gunaratnam and Oliviere, 2009) has potential to readdress the balance between “psycho-dynamic and artistic methods” (p.2), explored materially in art therapy literature (Mahony, 2001; Moon, 2010; Moon, 2016). Within this research a narrative approach is used to create conceptual prompts within the process of making – layering stories within the material as artifacts form and through the addition of sound and projection mapping. Documentation films [https://vimeo.com/222669034] also reflect on the nature of the collaborations and its role in the ethical narration of the research.

Using co-design acknowledges that the bereaved have a distinct and nuanced knowledge of their relationship to the loss (Sanders & Stappers, 2008) and tackles traditional hierarchies around client-based therapy. By reflecting on a sustained two-year co-design process with the bereaved, this research advocates that in sensitive contexts collaborators must have agency at all stages of the design process, otherwise as solutions or products begin to form they impose design decisions on the community rather than activate collaborations with them (Bowen et al, 2013). This paper explores the diverse formats needed to develop ethical design practices that incorporate digital and public engagement through transparency, personal choice and collaboration.

Background: Most older Australians state they prefer to die at home, yet less than 15% experience a home death. Timely recognition of the likelihood of death is important for planning End-of-life (EOL) care at home. The Minimum dataset Mortality Risk Index – Revised (MMRI-R) was initially developed to predict 6-month mortality for older adults in residential aged care and was later validated in other clinical settings. The MMRI-R is yet to be used in the Australian Home Care Context.

Objective: This study aims to evaluate the feasibility of translating an existing published evidence-based method of mortality risk assessment using MMRI-R to the care of older people receiving aged care at home in Western Australia.

Design: Retrospective cohort study design.

Methods: The study will be conducted using the retrospective data gathered from over 2000 client health assessment records of a large Home Care Provider (HCP) in Western Australia. As a part of their care planning process, this HCP introduced the MMRI-R as an evidence-based mortality risk assessment tool, for older adults receiving aged care at home. The criteria for the tool are integrated into the electronic assessment system as a part of their practice focus, on improving end-of-life care. Assessment using the MMRI-R does not require any additional physical assessment of the clients. The MMRI-R score is calculated automatically once the home care staff fills out the routine assessment forms.

Results: Anonymous risk index scores at 1 and 3 months and mortality outcomes at 6 months will be generated. The feasibility of integrating MMRI-R into the standard care system of home care provision will be assessed. MMRI-R scores will be mapped against outcome measures including deaths and other hospitalizations.

Conclusion: This project informs a larger body of work focused on implementing a practice change to enable dying at home through developing an effective person and family-centered community care planning model. Identifying the risk of death will assist home care teams, families, and informal carers to enable individual preferences for EOL care at home.

Background: Despite health equity being a focus of many organizations, including the World Health Organization, equity of palliative care outcomes are not routinely measured by many specialist palliative care services.

Objectives: This study aimed to identify measures used to assess equity in palliative care service delivery, in order to help specialist palliative care services address measurement gaps and address inequities in their service provision.

Design: Scoping Review

Methods: The following databases were searched to identify articles up to May 2023: Medline (Ovid), Embase (Ovid), CINAHL (EBSCOhost), and Cochrane Central Register of Controlled Trials (Ovid). Equity factors were assessed based on “PROGRESS-Plus”: place of residence, race/ethnicity/culture/language, occupation, gender/sex, religion, education, socioeconomic status, and social capital, Plus age, disability, and sexual orientation. We included disease type (e.g., cancer or non-cancer) in the “plus” factors. Abstract, full-text screening and data extraction were completed by two independent reviewers, with conflicts resolved by a third reviewer, following JBI scoping review methodology.

Results: 14,964 records were screened for inclusion; 1451 full texts were reviewed, of which 284 were included in the final analysis. Approximately half of the included texts were from the USA. Place of death (11%), patient symptoms (10%) and costs of care/health resource use (9%) were the three most common palliative outcomes assessed for inequities. Gender/sex (18%), age (17%), disease type (13%) and ethnicity (13%) were the most common equity factors assessed. Analysis of health administrative data was the most frequently reported measurement method for both palliative outcomes (32%) and equity (32%). Notably, many equity factors including sexual orientation, language spoken, disability, homelessness and substance use disorder were rarely measured.

Conclusion: Important gaps exist in how equity of care is being measured by specialist palliative care services. Findings from this scoping review provide an opportunity to develop new measures and embed existing equity measures into the indicators that will shape palliative care delivery in the coming years.

Background: Family and friends who provide unpaid care (family carers) play a vital role in supporting people towards the end of life. Family caregiving at the end of life is associated with a range of negative impacts on health and wellbeing, and supporting end of life family carers has been recognised as a national priority in the UK. Despite this, there are no population level estimates of the number of end of life (EOL) family carers in the UK and little is known about the demographic profile of this group.

Aim: The aim of this study was to estimate the number of EOL family carers in the UK and describe demographic characteristics of this group.

Design: Secondary analysis of observational data from the UK Household Longitudinal Survey (UKHLS).

Methods: UKHLS collects health and social data annually from around 40,000 households in the UK. We used data from all waves from 2009 - 2020 (inclusive). EOL family carers were defined as participants aged > 16 years, who self-identified as a carer for someone (>16 years) in their household, where the care dependent died before the household’s next annual interview. We also used the “UK population estimates” dataset from the Office for National Statistics to provide national prevalence data.

Results: The number of EOL carers in the UK varied between approximately 135,000 and 180,000 per year. On average, approximately 4% of household carers were EOL carers each year and 16% of household carers would become an EOL carer at some point. We did not find major differences between the distribution of EOL carers and the general population regarding country of residency (England, Scotland, Wales, Northern Ireland) or ethnicity. However, we did find an older population among EOL carers, with 60% aged between 50 to 79 years compared with 42% in the general population. We found an over-representation of females (57% vs 52% in the general population) and individuals with lower education levels (44% had left school at the minimum age vs 26% in the general population).

Conclusions: This is the first study to use representative population data to establish the number of EOL family carers in the UK. We estimate that over 130,00 people are providing unpaid EOL care each year. EOL carers are more likely to be older, female and have lower educational levels. The findings contribute to increased understanding of the needs of EOL family carers in the UK and suggest a need for targeted interventions to address their specific needs.

Background:

Death literacy is an important aspect of a new public health approach to palliative care and refers to the skills and capacities necessary to navigate and make informed decisions about death-related matters. The Death Literacy Index (DLI) allows for the exploration of current levels of death knowledge and skills within communities i.e., ‘death literacy’, and how these can be enhanced under public health care initiatives. The DLI was developed in Australia and has reported good psychometric properties across several international evaluations. In the UK, the DLI has evidenced good structural, convergent and discriminant validity. However, the content validity of the DLI within the UK has yet to be formally assessed.

Objectives:

The aim of this study was to evaluate the DLI for content validity, focusing on the relevance, comprehensiveness, and comprehensibility in a UK population.

Design: A cognitive-interview study utilising a think-aloud technique

Methods: Fifteen cognitive interviews were conducted with members of the public across the UK, with participants asked to complete the DLI while voicing their thought processes aloud. This was followed by a short semi-structured interview schedule. The interviews were conducted online, and initially coded for any issues present using a coding framework based on the previous literature. Deductive thematic analysis was used to analyse the semi-structured interview data.

Results: Overall, the index was positively received by participants and opened up opportunities to expand comprehension of death processes and their access to services. There were issues identified with a small number of items. Participants also highlighted certain aspects of death literacy which they felt were missing and reported issues with use of jargon and presentation of the scale.

Conclusions: The DLI potentially has a number of uses in supporting practitioners in the UK aiming to advance the public health approach to palliative care. The current study highlights a number of areas where the DLI could be strengthened so that it is more attuned to the UK population.

Background

New Zealand’s COVID-19 Tangihanga (funeral) policies required a tūpāpaku (body) to be uplifted by a Funeral Director immediately after a Death Certificate was completed. Indigenous whānau (family including extended family), were unable to employ their tikanga (customs) during lockdown. Māori customs require the deceased’s body to be with them at a marae (meeting house), or private home, several days before internment. What helped whānau during this challenging time?

Objectives

We aimed to explore bereaved Māori whānau experiences of providing end-of-life care to someone with a terminal illness, and conducting funerals during COVID-19 Lockdown. We wanted to explore the perspectives of whānau, health professionals and Funeral Directors to understand what helped or hindered whānau.

Design

We used qualitative Kaupapa Māori Research methods to investigate bereaved whānau experiences, health professionals’ perspectives, and the role of Funeral Directors in supporting whānau. Findings were published as whānau pūrākau (stories) and portraits; these were disseminated via a virtual reality online exhibition using Arts Based Knowledge Translation methods and as a book.

Methods

We conducted twenty-nine face-to-face interviews with whānau in four regions. Community research collaborators supported recruitment. We interviewed 23 health professionals and community support people and seventeen Funeral Directors. A Kaupapa Māori-centred inductive thematic analysis was used to analyse and interpret the data.

Findings

Whānau were distressed; marae were closed and tūpāpaku were being uplifted and cremated. Funeral Directors took care of transfers and social distancing. They found ‘grey areas’ to adapt policies and cultural customs. To support bereavement, they drove slowly through rural communities; people could view the body and perform cultural rituals. Funeral Directors thought the pandemic funeral policies did not cater for bereaved whānau. Some whānau were impacted by the additional funeral expenses.

Conclusion

Compassionate, culturally aware Funeral Directors supported Indigenous whānau and communities. As death experts, they should be more involved in pandemic funeral planning. Government should consider remunerating additional funeral expenses during pandemics.

Background: Spiritual care is a core part of palliative care. Research has shown that inquiring about a patient's spiritual concerns has plenty of benefits. Through non-medical discussion, such inquiry allows Health care professionals (HCP) to get to know patients better and enhances HCP-patient interactions by strengthening trust. On the other hand, the scant research suggests that there are inherent difficulties in providing spiritual care.

Aim: To evaluate the effect of a spiritual care postgraduate course for palliative care professionals on professional quality of life (ProQoL), mindfulness and self-care.

Design: This pre–post interventional study with a pre-experimental design was conducted from September 2022 to November 2023.

Method: Data were collected before and after the intervention including the variables: age, gender, profession, meditation practice, mindfulness, ProQoL, and self-compassion. The intervention consisted of an online spiritual care training course, designed based on EAPC spiritual care competencies through weekly sessions over 14 months. An experiential learning model has been built to understand and accompany suffering in palliative care practice, integrating spirituality from a trans-confessional humanist paradigm. Research permission was granted by the IRB of the Autonomous University of Madrid (Spain). Multivariate analyses of variance (MANOVA) were carried out to study the effectiveness of the intervention.

Results: A total of 30 participants participated. Most were female (90%) with an age average of 48.73 years (SD 8.77); physicians (46.7%), nurses (30%), and psychologists (13.3%). 56.7% of the participants were from Spain; 16.6% from other EU countries, and 26.5% from South American countries. Significant improvements were found in ProQoL (F(3, 25) = 6.612, p = 0.002, η2 = 0.442) and self-care (F(3, 27) = 7.024, p = 0.001, η2 = 0.438), respectively. Despite the slight increase in mindfulness level, differences between the pre-post-test were not statistically significant (F(5, 25) = 1.710, p = 0.255).

Conclusion: This spiritual care training course can contribute to improving palliative care professionals’ quality of life and self-care. Therefore, we suggest prospective studies concerning more long-term effects of this project in the development of spiritual care competence. Lastly, all the learning outcomes need to be practised, polished, and extended to different cultural contexts.

Background: Pediatric Palliative care focuses on providing relief from symptoms and stress of a life-limiting illness. The goal is to improve quality of life for both the child and the family. Pediatric Palliative Care can take place prenatal if a child is diagnosed with a life limiting illness before birth. Most of the children which receive Pediatric palliative care are diagnosed with a rare disease and therefor have an unknown live expectancy.

Objectives: The goal of this pragmatic cases series practice development project is to demonstrate, how successful pediatric palliative care with a family integrated focus can be performed when health care staff in the hospital and community setting are collaborating in a partnership for care.

Design: A pragmatic case series practice development project serves to define a comprehensive patient journey for successful pediatric palliative care to support the collaboration of community and hospital based health care professionals.

Methods: A pragmatic case series practice development project serves in a pediatric palliative care setting to define successful partnerships between health care professionals in different health care settings as well as patients and families to enhance a partnership for care in pediatric palliative care settings .

Results: Based on this small case series we demonstrate different paradigm and how to implement these in daily practice to enable successful pediatric palliative care on a family integrated focus in the hospital as well as the community setting. We elaborate key factors to support a comprehensive continuum of care which focuses on enabling patients and families based on their individual needs.

Conclusion: Pediatric palliative care needs to be implemented long before end of life care of a child and has the power to build bridges between different health care settings. They further enable a family integrated care model which supports a partnership in health delivery for child and family.