Conference Agenda

Background: In 2022, The Lancet Commission on the Value of Death sets a research agenda that puts forward the concept of ‘realistic utopia’, calling for a radical paradigm shift regarding the relationship to death. Public Health Palliative Care assumes this shift can be achieved through socio-cultural transformations embedded in five principles: 1) acting on social determinants of dying, death and grief; 2) promoting a social model in which dying is seen as a social, relational and spiritual process; 3) building support networks for caregivers, the dying and the bereaved; 4) breaking the death taboo through storytelling about ordinary death and grief; 5) recognizing the value of death. Although the aim is to bring about socio-cultural transformations in the way we live, care, die and grieve, we still know very little about whether such initiatives achieve this goal because it is undertheorized.

Objectives: The objectives are to situate, within an explanatory model, the sociocultural forces that are transforming the Western relationship to death over time, and to demonstrate how this model can serve as an overarching theoretical framework encompassing the five principles to better capture socio-cultural transformations.

Design & Method: As part of a doctoral thesis completed in 2021, an explanatory model of the transformations in the Western relationship to death was developed to better understand contemporary experiences of death and dying. Grounded in anthropology, a transdisciplinary literature review was conducted to develop a theoretical model of the evolutionary process of the human relationship to death.

Results: The model describes the neurobiological and socio-cultural foundations of the relationship to death as human universal across societies, cultures, and time. Built on these foundations, the model explains, using a social ecology framework, the production mechanisms of five immortality regimes in Western civilizations (Ancestral, Divine, Christian, Scientific and Postmortal). These coexisting regimes, as foundational and structural determinants of death, dying and grief, have a major influence on the contemporary attitudes, beliefs, meaning and value attributed to death.

Conclusion: This theoretical model offers an in-depth understanding of the socio-cultural forces that drive the relationship to death, thus, holds great potential for tracking the socio-cultural transformations that public health approaches to death and dying hope to achieve.

Background : Good death is often subjective and can vary across cultures, religions, and individual beliefs.

Objectives : This research aims to explore the meaning of the death and good death among Thai people.

Design and Methods :The study used qualitative approach, using in-depth interviews with purposive sampling of 25 person. The respondents included both men and women aged 40-60 years from four regions of Thailand. The analysis was employed by content analysis.

Result : The socio-cultural dimension of a good death among Thai people encompasses a broad range of factors, including holistic well-being, the meaning of life, interpersonal relationships, cosmological beliefs, and the absence of suffering. This multidimensional approach reflects the complexity of the human experience and highlights the importance of cultural context in shaping perceptions of a good death. Good death means beyond free from physical pain and symptoms management but also the meaning of life, the interpersonal relationship, both in this world and the next world, and in relation with their cosmology. The meaning of life is intertwined with the idea of a good death. It implies that a meaningful life contributes to a good death. This connection emphasizes the importance of purpose and fulfillment throughout one's existence. The good death is the result of good Kama, having dignity and a sense of completion and of the timing of one’s death. The quality of relationships, both in the present life and the afterlife, is a crucial element of a good death. This implies that connections with others play a significant role in the overall well-being of an individual as they approach the end of life.

Conclusion : The concept of a good death is not solely about physical health but includes mental, spiritual, and social aspects. This suggests a more comprehensive view of well-being that considers the person as a whole. Recommendation from the research is to promote good death during the end of life care with considerations of cultural value and cultural contexts of the persons.

Background

As global life expectancy rises, an increasing number of individuals living with advanced illnesses face prolonged periods of health decline, which profoundly affects their physical, social, emotional, and spiritual wellbeing.

Objectives

We sought to explore experiences and perceptions of social wellbeing, focusing on social connectedness and identity, among adults living with advanced illness and their informal carers in North-East England, UK.

Design and Methods

A qualitative study, with data collected through individual and/or joint in-depth interviews including a follow up interview and using adapted grounded theory approach to analysis.

Results

Nineteen adults living with advanced illness and 15 informal carers were interviewed. Due to the limitations imposed by advanced illness and life changes like bereavement, relocation, and retirement, all participants had over time experienced significant reductions in their social networks and activities. Their social relations changed from heterogeneous networks to smaller, close-family-only circles. A few participants maintained connections with friends and social groups. Nevertheless, many participants upheld a sense of belonging and meaningful existence through their interactions. These included the few close family and friends, 'familiar strangers and places’, 'complete strangers', everyday activities, pets, and cherished objects from their past. This sense of belonging and meaningful existence changed constantly to accommodate the constantly changing physical abilities and life situations.

Conclusions

Interventions to improve social wellbeing in advanced illness should be diverse and flexible, encompassing building social connections, strengthening existing connections, and a variety of meaningful activities. These may include maintaining simple daily routines, community access, and contact with valued places, people, and objects ,and should be informed by context and individual elements like values, experiences, physical abilities, and personal preferences at various times.

Background
This paper explores the growing trend of end-of-life (EOL) narratives in Western European EOL and palliative care. Dying individuals increasingly receive support from caregivers and biographers to review their lives and to pass down these stories to loved ones (Amfora, BE; Passeurs de mots, FR). The trend prompts us to rethink the changing ways in which the dying anticipate their afterlife among the bereaved. Research has emphasised the therapeutic benefits of narrative life-review for the dying, relatives and caregivers in EOL stages. However, little is known about the spiritual and cultural sense-making dimension of this narrative practice of legacy making.

Objectives
My study aims to understand how dying people navigate death, express values and communicate beyond the boundaries of death, by developing thoughts and hypotheses about the construction of narrative identities of the dying, on the one hand, and about the roles caregivers assume in assisting the dying to be posthumously witnessed by the bereaved, on the other.

Design-Method
The study is grounded in a literary and cultural studies perspective that values the EOL narratives both as narrative practices and textual objects at the intersection of narrative, spirituality and health care. Drawing on Ricoeur’s concept of narrative identity and on scripts such as the Dignity Therapy Interview (Chochinov) and culturally shared stories of the dying (Frank 1993), the study assesses voice(s), temporal constructions and imaginative narrating in two recently published EOL narratives.

Results
My study shows how EOL narratives not only propagate a contemporary ars moriendi that negotiates palliative values such as dignity and autonomy in the dying process. They also propagate an ars memorandi that emphasises the influence the dying person seeks to have in the post-mortem phase. Furthermore, I will show that EOL narratives, although carefully structured and stylised, present a paradox that highlights the limitations of storytelling in capturing the raw reality of dying.

Conclusion
Drawing on the anticipatory underpinnings of this ars memorandi my study highlights the need to expand bereavement care during EOL stages. Given the stylized nature of EOL narratives influenced by biographers, I advocate for additional research that examines EOL narratives independent of guiding agencies and call for a nuanced and culturally diverse understanding of identity within the realm of EOL narrative practices.

Background

When patients are at the end-of-life, Goals of Care (GOC) discussions allow healthcare providers to align medical care with the expectations of patients and their families. The challenges faced by healthcare providers who conduct GOC discussions are well described, but there is little understanding of the lived experiences of patients and their Nominated Healthcare Spokespersons (NHS) who participate in the discussion. In-depth analyses of their experiences will provide insight to improve the conduct of GOC discussions.

Objectives

The primary aims are to identify (1) the features of a well-conducted GOC discussion and (2) the elements that facilitate a consensus decision between patients, NHS, and the healthcare provider.

Design

A qualitative inquiry method led by a grounded theory methodology, employing a social-constructivist approach and interpretivist research paradigm.

Method

Participants were purposively sampled from the medical oncology, geriatric, and palliative medicine department of a single tertiary hospital based on sociodemographic data and disease trajectory. Data was gathered using semi-structured interviews until theoretical saturation was reached. 20 interviews (7 patients,13 NHS) were conducted. All participants are patients or NHS of patients who have life-limiting illness (10 cancer, 10 non-cancer), with varying prognoses from 3 months to 1 year.

Results

The analysis yields 2 major themes – (1) Desired Communications Skills, (2) Preconceived Health Perceptions – and 6 subthemes – (1a) Mitigating Complexity (1b) Respecting Autonomy (1c) Empathy, (2a) Trust (2b) Existential Struggles (2c) Health Perceptions. In well-conducted GOC discussions, healthcare providers are expected to mitigate the complexity of medical care, respect autonomy by recommending therapeutic options, and demonstrate empathy. A consensus is easily reached if the participant gives deference to the opinion of healthcare providers, engages in existential struggles, and is accepting of their medical condition. It is difficult to reach consensus if the participant harbors mistrust towards healthcare providers, avoids existential struggles, and has a perceived sense of invincibility regarding health.

Conclusion

Communication skills such as mitigating complexity, respecting autonomy, and displaying empathy, are foundational to well-conducted GOC discussions. Identifying and addressing the preconceived health perceptions of the participant will help to reach consensus.