The End of Life Experience
3rd Global Inclusive Interdisciplinary Conference
Friday 12th March 2021 – Saturday 13th March 2021
Towards a Death Friendly Society
Delft University of Technology
Meaning of Death, Quality of Death and Dying, Design for End of Life
Improved living conditions and developments in medical technology have increased our life expectancies. We even allow ourselves to dream of possibly becoming immortal, downloading our brains into sophisticated computers or merging ourselves with some kind of cyborg. However, philosophers from the past and present have argued through thought experiments that life looses its meaning when becoming eternal (Montaigne, de Beauvoir). It is precisely our mortality that puts our lives into perspective, and gives meaning to our lives. We should therefore embrace dying as a natural part of living, and integrate death in our lives.
Despite the positive impact of accepting death, our western societies tend to remove death and dying from daily live. Hospitals, hospices and cemeteries are removed from living areas, into parks or other sites close to nature. Also, people rarely die at home. Moreover, the loss of religious rituals and practice has impoverished our knowledge and skills about how to cope with death. We tend to become death illiterate, thereby loosing an important source of wisdom and well-being, and impoverishing the end of life experience.
To counter these developments, we could create a death friendly society: a society in which death is embraced and in which people know how to face mortality. Our societies are birth friendly: an elaborate structure of a mix of healthcare, education, celebrations, rituals and shared responsibilities aims to ensure a warm and healthy welcome to every new human being. Likewise, a structure of (public) healthcare, education, and rituals could ensure a peaceful and dignified farewell, in other words: a good death.
This paper will explore the above statement from a design perspective: what does a death friendly society mean? What is needed? What should be developed to achieve that goal? What are our responsibilities and how are they distributed? What are the ethical implications? The paper will build on existing and new practices that illustrate this death-friendly approach, and conclude on a proposal on how design could contribute to further developments.
Engaging Students as Caregivers to Hospice Patients in Community-Run Residential Care Homes
Union College, Schenectady, NY
end of life care, hospice, residential care homes, caregiver training, community engagement, empathy, health professions students
Palliative care is recognized as a human right (World Health Organization, 2015), yet significant barriers exist in accessing care, especially for individuals at the end of life who lack a caregiver system and safe, secure housing. To address these gaps in care, residential homes for the dying are opening across the U.S. In these “comfort care” homes, community members serve as surrogate family members providing care to hospice patients during their final days. Our presentation will provide an overview of this community caregiver model and describe how these homes are also serving as end of life care training sites through a Community Action, Research, and Education (CARE) Program. The CARE program connects health professions students with residential care homes and supports them as they engage in direct bedside care. The experience teaches them how to address the physical and emotional needs that change daily as patients progress toward death, while actively dying, and afterwards as families process the loss. The opportunity to journey alongside terminally ill patients and family members in a home setting provides a special lens to the dying experience in a holistic, patient- and family-centered way where death is expected and supported as a natural process, not as a medical crisis or failure. To date, the CARE program has placed students from eight undergraduate institutions as caregivers in six different residential care homes. Our data show that over time, students show increased empathy and confidence providing end of life care. In addition, they gain an understanding of how the lack of caregivers and housing insecurity can make it difficult for people to experience a dignified death. The program offers students an opportunity to support community initiatives to provide end of life care and to develop skills that will be invaluable to them as future healthcare providers.
Performance: Last Supper
Emma Miriam Berentsen
Last Supper is a group performative dinner that offers the opportunity to talk about the role of death and mortality in our lives. A maximum of 12 participants are invited each night to bring a dish they would want to share as their ‘Last Supper’ and to join in a collective conversation. Last Supper intends to facilitate conversations around death and our own mortality with each participant’s contributions as their starting point.
The Last Supper was conceptualised following the chosen death of my mother in 2015, before which my sister and I prepared her final meal: home-made lasagne and organic apple cider – just how she liked it. Despite that my mother was unable to enjoy the food in the way she once had, the occasion provided a space to celebrate her life in the knowledge that it would be over the following day.
Consequently, the Last Supper dinners have proved to be engaging and open performative experiences in which a group of strangers come together and find common ground to discuss and reflect on life and death. Through this project, my aim is to lighten this dark, unspeakable cloud and I have found that Last Supper has not only contributed to the current discourse on death, but has provided a place for people to talk about this inevitable, painful yet cathartic life phenomenon.
What would I like to share at the End of Life conference?
As part of my research into these performative dinners I was asked by the editors of Platform, a magazine of the Royal Holloway’s theatre department, to write a creative response about this body of work. Given a 15-20 min slot at the conference I would propose to organise a little reading/performance of this where I read/share the written article with the particpants and lead them into a short guided eyes-closed journey where I will raise questions related to how they envision their Last Supper, concluding with an informal chat about the participants last supper wishes and thoughts about it.
The article I am referring to can be found here:
(Still) Life. A Passing Meditation on Julian Barnes and Grief
University of Lisbon
Loss, Grief, Elegy, Life’s meaning(lessness). Julian Barnes
‘Every so often I find myself catapulted out of bed with fear of time and death, panic at the approaching void; (…) I shout a useless (and disappointingly uneloquent) ‘No, no, no’ as I wake.’ Julian Barnes conveys his obsession like this in ‘Parenthesis’ of A History of the World in 10 ½ Chapters (1989). It comes: ‘from not wanting to be dead and not liking the idea of being dead (…)’ (2007). Such wry Barnesian understatement is revisited in Nothing to be Frightened of (2008), where, ‘between essay and memoir‘, he contemplates family, his parents’ deaths and his distance from God and religion. In Levels of Life (2013), he faces his devastating loss – his wife’s brief illness and subsequent death in the early autumn of 2008. If death had previously been the void, the nothing that frightens but should not because it is ‘that banal, unique thing’ (75), Pat Kavanagh’s death was such a catastrophic event that the writer seriously considered suicide. His condition was instable; the sorrow was for a long time overwhelming. ‘I did already know that only the old words would do: death, grief, sorrow, sadness, heartbreak. Nothing modernly evasive or medicalising. Grief is a human, not a medical, condition.’ (77-8). Every so often this memoir is raw in the suffering it exposes and the reader recognizes that the text is a form of resistance against death. However inexpressible and extreme the sorrow may have been, Barnes perpetuates his widower’s condition in a meticulously controlled elegiac text. He had no control over his wife’s death. Re-claiming through his text(s) the ability to lament his companion’s passing he regains some control and a peculiar authority. ‘Writers believe in the patterns their words make, which they hope and trust add up to ideas, to stories, to truths.’ (93).
War-time Autonomy: An Analysis of Michael Ondaatje’s The English Patient
war-time, autonomy, caregiver to patient relations, identity, collective action, Canadian literature, WWII
In this essay, I will theorize about the autonomy of those acting within war-time circumstance through an analysis of Canadian author Michael Ondaatje’s text, The English Patient. Looking to Elaine Scarry’s text, The Body in Pain: The Making and Unmaking of the World, her theorization regarding physical suffering in relation to war will provide the theoretical foundation for this essay. Scarry highlights the emphasis on collective action rather than individual action in relation to soldiers acting in wartime in order for soldiers to find moral reprieve; within this context of collective action, I will assess whether or not Ondaatje’s characters act autonomously, and if so, at what cost. Looking specifically at the character of the English patient – a man who is entirely burned on the outside, erasing his former physical identity, and who is not actually English as his caregiver believes him to be – I will assess the central irony of this text in order to expand on ideas of the significance of nationality in relation to identity and autonomy in war-time circumstances. Looking to the character Hana, a Canadian nurse who stays behind at the Italian villa to care for the English patient, I will assess how Hana’s beneficence and virtues as a caregiver to the English patient are influenced by the war-time circumstances of this care. As well, looking to the imaginative history Hana creates for the English patient, I will assess the caretaker to patient relationship and how this dynamic impacts the patient’s autonomy. Ultimately, I am interested in the effects of war-time on the autonomy of those acting within war-time as it creates a space in which collective action is prioritized and enemies are distinct – assessing how Ondaatje’s text complicates these notions.
Beyond The Eleventh Hour: End of Life Stories from the Hospice
documentary, dying-with-dignity, skin-hunger, music therapy, pet therapy, art therapy
This article and the short film fragment that I intent to present, is part of my research for the documentary “Beyond The Eleventh Hour”, that spanned more than four years of interviews, observation and sharp lens analysis of what the philosophy and praxis of Hospice with its multitude of Therapy Programs means for certain groups of patients that are given the chance to die with dignity.
Recorded tapes and letters to the families are some of film’s breath of surprisingly touching human experiences while examining eternal complex issues like: the meaning of suffering, the desperation for spiritual salvation, or desire for love and forgiveness, the family dynamics in preserving and weaving together their inspirational stories, skin hunger, the paralyzing fear of unknown, and finally the cathartic, silent acceptance.
Poignant stories evoking laughter or tears as relatives and friends recall the unique idiosyncratic experiences of the loved one are revealed with discretion while as a cinematic meditation it explores the importance of dying with dignity. Following my father’s passing in a surreal corrupt Romanian medical system, I learned that age or status of terminally ill patients are factors that bring the dying experience to kafkaesque proportions.
The quest with my presentation is to bring insight on the special programs that The Hospice of Cincinnati brings to its community through Music Therapy, Pet Therapy, Art Therapy, Chaplains, Rabbi, and through the special Eleventh Hour volunteers that are silently are devoting their time to make a difference in the actively dying person’s transit into the light. As Jung aptly put it: “Death is a special time when soul enters in the light.”
Dying with a Learning Disability in the UK: A Qualitative Exploration of the Experiences of Commissioners & Service Providers
Anglia Ruskin University
Learning disabilities; death; dying; end of life; palliative care
In the UK the population of people with learning disabilities (PwLD) is not only increasing but also living longer. Despite this growing population and evolving ethos’s of care and equality, PwLD still experience inequalities in health and social care, experiencing unmet needs across many physical and psychological domains. PwLD are particularly vulnerable to unmet needs at the end-of-life, due to the complex needs they can present with, alongside issues with communication and misunderstanding among care providers. The consequence of these challenges is end-of-life care which often does not meet the expectations, preferences or symptom relief needs of PwLD, resulting in distress, undignified deaths, and trauma for families and those involved in care. Aim: To explore these challenges within the UK this study aimed to explore barriers and facilitators to the delivery of appropriate, personalised, and high quality end-of-life care for PwLD. Method: Nine in-depth qualitative interviews were conducted with service commissioners and providers directly involved in health and social care for PwLD. Results: Thematic analysis revealed 3 main themes: confronting death; the ‘good’ death; and colliding misunderstandings and rights. Conclusion: There was unanimous recognition of the vulnerability of PwLD to unmet needs during dying and death. Central to meeting these needs is overcoming communication challenges and bridging understanding so that PwLD can be engaged in open conversations which prepare them in advance for end-of-life. End-of-life also needs to be confronted in in health and social care provision so that the importance of death can be respected, communication paths can be opened, misunderstandings can be addressed, and the rights of PwLD can be acknowledged.
How do nurses make sense of their experience of providing end of life care for people with dementia: An Interpretative Phenomenological Analysis?
University of Wolverhampton
End of life, dementia, nursing
Research on nurses’ experiences of providing end of life care is predominantly focuses on cancer care. The growing number with end stage dementia suggests nurses will increasingly provide end of life dementia care. This paper explores nurses’ experience of providing end of life dementia care.
Aim / Objective:
The aim of the research study is to explore individual nurse’s first-hand experience of providing end of life dementia care and the meaning they attribute to their experience.
– What is it like to nurse terminally ill people with dementia?
– How do nurses perceive their role in providing end of life care for people with dementia?
– What is the emotional, professional or personal impact of nursing terminally ill people with dementia?
The study utilised a qualitative research approach specifically interpretative phenomenological analysis (IPA). A purposive sample of six qualified nurses with experience nursing terminally ill people with dementia was recruited. Data was collected using face-to-face semi-structured interviews. Interview themes rather than an interview schedule was utilised (Kvale, 2013). The interviews were audio taped and transcribed for analysis.
Preliminary findings from my study seem to indicate that participants experienced a paradoxical interplay of joy and despair. Furthermore, participants seem to have a contrasted desire to show compassion for the dying patient and wanting to distance from death. Participants identified the impact repeated exposure to grief but felt they did not have permission to grieve. Some participants have developed self-care strategies to cope with the stressors and on-going exposure to death associated with providing end of life dementia care.
The Depiction of Syphilis in Iconography and Painting. A Visual Journey into the 15th Century
Syphilis, Art, Representation, Narrative Medicine, Iconography
As essayist Octavio Paz remarks, Saint Jerome’s decision to translate the passage in which Jesus refers to Satan as a fiery sparkle into “lucifer” (the morning star) was, indeed, an act of poetic creativity and moral imagination on his behalf: light is inseparable from dark, as flying is from falling. “Eros” seems to share Lucifer’s ambiguous, intricate nature. It is culturally portrayed as both creation and destruction, light and darkness, and pleasure and death. The searing flames of Eros may either aid humans ascend to the sky or crush them as they fall down. The “dark side of Eros” inflicts upon us not only maladies of the soul, but of the body as well. In the 15th century, such a “malady of the body” took Europe by surprise: Syphilis. This disease that caused an epidemic widespread of terror and fright, also enriched our cultural and artistic heritage. The pertinent question now follows: How does a mere disease transit from “epidemic” to “culturally endemic”? This paper aims to present and examine a collection of artistic representations depicting the morbus veneris from the 15th to the 20th century with the scope of revealing the avalanche of conflicting opinions and emotions that society dealt with, while attempting to understand and accept human sexuality. Detailed engravings, or wooden cuts showcasing the first clinical settings of Syphilis in which physicians equipped with little medical knowledge treated and cared for their ill, shall also be brought into discussion. In this regard, patients’ individual stories become narrative histories testifying to the dangerous cost of associating sexual diseases with sin, punishment and promiscuity. They offer a jaggy glance into a dark era in which an entire Europe, caught in panic and fright, casted upon its diseased its insecurities and anxieties, leaving those in most of need to take the fall.
Netflixing Dark Tourism: Public Display of a Multivariate Typology of Dark Destinations
University of Girona, Spain
Dark tourism, destinations, death, authenticity, participation
Dark tourism as a niche market related to the touristic interest of places related to death has gained lately a lot of interest whether directly due to the public presentation of this tourism typology by Netflix media-service provider, or indirectly through the sudden increase of nuclear tourism flows in Chernobyl after the broadcast of the mini-series Chernobyl in HBO. Even though there have been various intentions to categorize the different types of dark destinations, they seem rather limiting in their effort to explain the attraction of darkness represented in objects and in experiences. This study attempts to offer a more complete typology of the actual tourism offer of dark destinations, based on the 26 dark attractions that were projected on the Netflix documentary series called “Dark Tourist”. The purpose is to show how the typology of these destinations is evolving and how enriching in terms of options for the tourist is becoming this niche market, in terms of object and experience authenticity, as well as in terms of active versus passive participation.
Amour by Michael Haneke – death as an expression of love.
Pontifical University of John Paul II in Cracow
Haneke, film, cinema, suffering, violence, death, love, sensibility, dilemma
Death, suffering, cruelty, pain-these are concepts known to everyone. People, because of television are accustomed to different unpleasant things. The generation brought up in the era of glass screens and influenced by the style instilled by mass media has soaked in with some patterns.
Michael Haneke’s unusual cinema argues with the popular models of film creation. It allows the viewer to make his own interpretations, does not facilitate anything and makes a distance that is supposed to lead to reflection. After the screening, the viewer is left with a kind of psychological discomfort. Haneke’s art is uncomfortable-the problems raised by it can affect anyone and nobody is safe. He brings to light the darkest corners of the human mind. The viewer does not feel safe, the world is appearing, ignorance causes chaos and aggression.
Amour is a 2012 French-language romantic tragedy film, the winner of many prizes including 85th Academy Award in the Best Foreign Language Film category. The eleventh cinematic work of the Austrian artist has an extremely important social and ethical significance for the contemporary viewer. It also cannot be denied a deep psychological dimension. It is hard to talk about death but harder to show how it may look like without blood and thunder. Haneke’s “death” in this picture is different: full of dilemmas, sensibility and last but not least-love. It could be shocking and incomprehensible at first, although Amour is a work which cannot be left without commentary. It is a representative of the director’s style-the criticism of civilization problems mainly internal emptiness, popular ways of depicting violence, death and revealing the true human interior.
It is really important to authentically touch the hard topics including death and love. Austrian register connects these two-seemingly different aspects of human life and reaches perfection in this field.