Conference Agenda

Background: The healthcare needs of people living in areas of high deprivation are complicated by the cumulative effect of the socio demographic factors known to impact on health outcomes, such as income, housing and education. Of note, for people living in more deprived areas, life expectancy is shorter and the onset of chronic disease and multi morbidity occurs much earlier. While the relationship between area deprivation and access to palliative care is becoming more widely researched, the vast majority of studies to date have focused on referrals to specialist palliative care services. This is problematic given the dominant model of generalist-specialist palliative care in high income countries which assumes that most people will have a level of need that can be managed by non-specialist palliative care services.

Objectives: To identify associations between area deprivation and the use of generalist and specialist palliative care services in the last year of life.

Design: A retrospective population-based cohort study of people aged over 18 years who died between January 2015 and December 2020 within one geographical area of Aotearoa New Zealand.

Methods: Using the National Health Identifier unique to each individual, deaths were matched to generalist and specialist palliative care service data. Deprivation was measured using the New Zealand Index of Multiple Deprivation. ICD10 codes were used to identify primary and secondary diagnoses. Logistic regression analysis was undertaken to identify predictors of service use in the last year of life.

Results: A significant association was found between area deprivation and health service use in the last year of life. Of note, people living in rural areas of deprivation were significantly less likely to receive a hospital (p=3.11E-06) or inpatient hospice admission (p=0.000). They were also less likely to have contact with their general practitioner (p=0.007) or experience a specialist outpatient clinic appointment (p=0.0016).

Conclusions: This study has revealed inequities in health service use across generalist and specialist palliative care services for people living in areas of deprivation. Of note, findings have highlighted how rurality amplifies inequities in access to appropriate palliative care. Further research is needed to better understand the consequences of these apparent inequities.

Background

The End of Life Choices Act (2019) provides a new end-of-life option for New Zealanders living with incurable illness. Without appropriate information and navigational support to guide and prepare whānau (Māori families) and their communities the Act can create further inequities for Māori. The Ministry of Health’s first year review revealed small numbers of Māori are using assisted dying services including those with incurable cancer.

Objectives

Our aim was to explore how Māori whānau accessed and engaged with assisted dying services and the impact the Act’s prohibition (health professionals’ inability to initiate conversations about assisted dying) had on whānau who wanted an assisted death.

Design

Qualitative Kaupapa Māori Research methods were used to interview forty whānau about their experiences of using, or wanting to use, assisted dying services. Findings are being transferred into resources using Arts Based Knowledge Translation methods.

Methods

Participants were recruited from across New Zealand using Māori networks. Twenty support workers (assisted dying clinicians, rongoā practitioners, spiritual leaders, and health professionals) were interviewed about their experiences of caring for people who received an assisted death. An inductive thematic analysis was used to analyse the data.

Findings

Indigenous communities are uniformed about assisted dying. Most adults who had an assisted death, or who wanted to hasten death, had cancer. Preference for assisted dying was influenced by observing whānau members, who had cancer, dying in pain. Participants wanted to avoid an undignified death. Many were unaware of the prohibition placed on health professionals, the eligibility criteria and what the process and procedure involved. Individuals who knew the ACT was legislated used their mana motuhake (autonomy and independence) to seek information. It was often difficult to discuss assisted dying with whānau and friends. Bereaved whānau experienced a sense of accomplishment in helping to release the person from intolerable suffering; this supported their grieving processes.

Conclusion

Māori use assisted dying services supported by their whānau however, their communities are unaware of the ACT. Culturally appropriate and accessible information is required to ensure access to assisted dying services is equitable. Whānau and their communities need support to help them discuss assisted dying to support them to make an informed decision.

Background: There are known longstanding inequalities at the end of life, including for those from minoritised ethnic backgrounds, immigrants, women and those living in poverty. The experience of those who face multiple disadvantages simultaneously, however, is poorly understood. Understanding and addressing the barriers to better access to palliative care, quality of care and outcomes for those who are intersectionally disadvantaged is essential if we are to provide equitable care for those most marginalised.

Objectives: To understand the experience of death, dying, grief and caring at the end of life for Pakistani women living in structurally disadvantaged neighbourhoods in the UK.

Design: Pakistani female peer researchers with lived experience and from a similar background led the co-development of a culturally competent and inclusive in-depth interview method which prioritised relationships, reciprocity and reflexivity. The community and institutional researchers all undertook bespoke training on participatory research methods led by national experts prior to protocol development and during analysis.

Methods: 13 in-depth interviews with Pakistani women lasting between 60-120 minutes were conducted using snowball sampling. Women were identified and recruited by the community researchers, who led the interviews, translated the transcripts and analysed the data using their lived expertise, taking an intersectional theoretical lens. 11 participants had not been invited to take part in research previously, and none had taken part in end of life care research previously.

Results: Analysis is currently underway, and the final findings will be presented. Themes will explore (i) experiences of systemic, organisational and inter-personal racism, Islamophobia, sexism and classism during caring, dying, death and grief; (ii) intra-group differences in how power and disadvantage were simultaneously experienced, were dynamic, evolved over time and across generations and (iii) primacy of community, caring and spiritual presence at the end of life.

Conclusion: This in-depth exploration of the experiences of death, dying, grief and caring at the end of life for intersectionally disadvantaged Pakistani women, by such women, has explicated what and who matters most at these times and the multiple, persistent barriers to good death, dying, grief and caring as defined by them. We will discuss the importance of intersectionality from the perspectives of researchers and participants.

Background: People experiencing homelessness have high rates of long-term conditions at a young age and are at high risk of dying young. In the UK many people with complex and advanced physical and mental health problems are living in homeless hostels, and rarely have access to palliative care. Supporting palliative care needs among this group requires a multi-disciplinary trauma informed response, which can be hard to achieve.

Objectives: to identify the educational needs of people from a range of different backgrounds, to produce content for IMPROVE which aims to facilitate local, multiprofessional communities of practice around palliative care and homelessness.

Design: Review of existing materials, research and consultation with inclusion health and palliative care and homelessness experts.

Methods: Desk based review of findings of previous research and educational materials and consultation with key stakeholders to identify the components of an educational intervention, for people from a range of professional groups, when supporting people experiencing homelessness who have advanced ill health.

Results: Topics identified included: understanding the causes, health and social care issues affecting people experiencing homelessness, the context of temporary accommodation as a place of care, complex trauma, communication, frailty and neurodiversity, addiction and working with change resistant drinkers, mental capacity assessment, palliative and end of life care planning, bereavement support. These formed the basis of IMPROVE, which contains videos and resources to deliver 8 online sessions supporting the development of local, multi professional communities of practice addressing palliative care and homelessness.

Conclusion: To improve support for people experiencing homelessness who may have palliative care needs, a broader approach, accounting for marginalization and trauma, is necessary. IMPROVE provides a mechanism for facilitating joined up approaches by making connections and providing an introduction to the range of inclusion health and homelessness related topics that are necessary to provide trauma informed, multi professional care towards the end of life for this population. Online communities can help to address the inequity that exists in palliative care access for people experiencing homelessness. IMPROVE has been piloted in the UK with promising results.

Conflict of interest

None

Funding

Funded by The Oak Foundation and Marie Curie. Supported by NHSE

Background: The health opportunities and health literacy of older people with a migration biography and/or a precarious socio-economic background are shaped by intersectional dynamics of marginalization and discrimination. The perspectives of this population group are underrepresented, their information needs regarding the topics of grief, death and dying are insufficiently addressed.

Objectives: In the context of a community development process in an urban housing project, we therefore addressed the question of how dialogue and communication formats need to be designed in order to talk with this population group about grief, death and dying and thus contribute to strengthening their death literacy. The aim was to give more space to the perspectives of older people themselves and to create spaces for dialogue and understanding about questions of living well until the end.

Design: A participatory living lab process in a local urban community was used to address residents expressed needs for places to meet and share around issues of grief, death and dying.

Methods: Inspired by the methodological approaches of storytelling cafés, philosophical practice and last-aid formats, a dialogue format with an integrated knowledge impulse was developed, implemented and reflectively evaluated in cooperation with experts from a hospice for homeless people and from social work.

Results: The design and setting of "Living well until the end" focused on everyday experiences of caring and ways of dealing with grief, death and dying. The setting enabled the exchange of knowledge about existing care networks and the acquisition of new knowledge. When preparing the topics and conducting the discussions, it was particularly important to combine social space and lifeworld-related concepts with geragogical considerations (e.g. through the choice of the location and by focusing on the everyday habits of social exchange and communication).

Conclusion: The development, implementation and evaluation of "Living well until the end" provided insights into the methodological design of such an event for this population group (e.g. designing the discussion as an everyday table talk; moderation with a stronger advocacy approach) as well as the ideas and experiences of older people with a migration biography and/or living in precarious socio-economic circumstances. Joint reflection and negotiation processes were encouraged, which also helped to strengthen the sense of community and to promote death literacy.