1st Global Conference
The End of Life Experience
Dying, Death and Culture in the 21st Century
including a guided tour of Belém and the Jeronimos Monastery, Lisbon
Saturday 17th March 2018 – Sunday 18th March 2018
Conference Abstracts and Papers
The Death of Hospice?
University of San Francisco, USA
Key Words: hospice, palliative care, dying, caregiving
It may seem strange to consider “innovations in dying,” but ever since the modern hospice movement commenced in the 1960s, hospice and palliative care have become important pathways for this difficult final phase of life. The current hospice model is now experiencing stress of its own: the industry has changed, and there continue to be huge shifts in how we die, how we live—and with whom. These large demographic changes are rendering the original conception of hospice harder to carry out as it was initially designed. This paper traces the complex web of factors affecting the hospice movement, and analyses future possibilities, as well as future challenges.
From The Inside Out: The Culture of Dying in U.S. Retirement Communities
Key Words Retirement, Aging, Dying
The way you know you’re dead, in a U.S. retirement community today, is when your picture goes up on the table in the lobby. Until that moment, it is something you don’t talk about. There are, indeed, related things you can talk about. Hospice. Long-term care insurance. Disability rights. Advance directives. POLST forms (Physicians Orders for Life-Sustaining Treatment; we’ll talk more about that later.) But what you still don’t talk about are the topics that force talkers to contemplate the fact of their own impending demise. Hastened dying? Never. Written declarations as to emergency situations? Tricky. Cremation plans? Heavens no. The lines between acceptable and not-acceptable conversations are thin, but steely. It is permissible to ask, “Have you signed a DNR (for Do Not Resuscitate,) or a form saying No heroic measures?” Pleasant, generalized conversations may follow. But one should avoid asking – when a dying friend is seen being loaded into an emergency ambulance – “Did he have documents saying he wanted to remain at home and not be taken to die in the emergency room or ICU?” This paper takes a close-up look at two California urban retirement communities and the ways their residents do – or do not – consider the event that results in the picture going up in the lobby.
Dying in the 21st Century – Out of Our Control?
Hunter New England Local Health District, NSW, Australia
dying, acute care, autonomy, shared decision-making, advance care planning, advance care directives, surrogate decisions
End of life is among the most rapidly changing areas in healthcare, not because it is the subject of intense research interest (it isn’t), but because the world has changed around us at breathtaking pace.
The rapid changes in the way health care systems manage end of life and dying are currently driven more by social demography than by any conscious plan to provide excellent care.
The brief history of trying to improve in this area is already littered with false starts and embarrassing failures. We need to accept and understand the underlying changes occurring around us to avoid these and other pitfalls, and to more skillfully approach a rather uncertain future.
Specifically, the rise of “patient autonomy” in many developed countries has been accompanied by increasing pressure on people to plan in advance for disability and death, and, in this way, take control of their own future. This has led to the ideal of “shared decision-making”, described by the New England Journal of Medicine as “the pinnacle of patient centered care”.
My proposal is to investigate with participants how this ideal works in practice, partly by means of looking at some real life decisions that I have made with families, and partly by participants attempting to take control of their own future care in a workshop setting.
The main teaching outcome is to question the model of autonomy upon which all advance care planning for end of life is currently based.
Grief and Loss: Cloth as a Materialisation of Mourning
University for the Creative Arts
Farnham, United Kingdom
grief, loss, mourning, bereavement, cloth, textiles, metaphor, art
One of the fundamental aspects of textile practice is the handling and manipulation of cloth. This is a familiar experience as we use textiles in everyday life, but in textile art practice cloth and stitch can be used to express emotions, thoughts and feelings. Cloth has its own language as curator Julia Curtis has written ‘…fold, drape, stretch, stain and tear – it signifies an emotional range from intimacy, comfort and protection, to more disquieting states of restriction fragility, loss and impermanence.’
The materialisation of the work of mourning is central to my practice based textile research; how a connection can be made with the unresolved grief of the viewer through the use of cloth in an art context. Antze and Lambek have stated that it is ‘virtually impossible to imagine memory […] without recourse to metaphor.’ In this paper I will discuss how textile artists use cloth as a metaphor for life experience to convey the emotions of grief and loss. I will reference textile artists including Megan Bostic as well as drawing on my own research and practice to demonstrate how cloth can be used to materialise loss and mourning and make a connection with the unresolved grief of the viewer; allowing them space and time to remember and reflect and open a space to progress their work of mourning. I will also address how the viewer responds to work made specifically to evoke the memory of loss and how the nature of cloth itself allows a process of cathexis to occur.
Dialogues with the Digital Dead
end of life, bereavement, hologram, holographic, chatbot, necromancer
“Though the gravesite would seem to be a place where we let go of the dead, it is also the place where we greet them again as angels” (Mogenson, 1992, xi).
Two months after becoming a widow, the humane society delivered a golden retriever puppy to her doorstep. The note attached to the puppy’s collar was in her late husband’s handwriting and said, “love him for the both of us.” In Japan, thousands of mourners have dialed the deceased from a glass booth on a grassy hill. The “phone of the wind” offers a disconnected rotary phone and a chance to keep communicating. For millennium, people have developed imaginative ways to bridge the space between the dead and the living. These connections have well established benefits such as allowing for the expression of difficult emotions, assuring continuity of relationship, and encouraging creative outcomes to mourning. Modern necromancers are employing increasingly complex, technological means to achieve these ends. Recently, a team of computer scientists and psychologists from the U.K. have helped four terminally ill people create messages that will be delivered by holographic images to their families after death. In Boston, Rahnama of the M.I.T. Medialab and his team are creating electronic representations of the deceased based on digital footprints such as emails, texts, tweets, snapchats and voice recognition software. These interactive chatbots will not only characterize the historical deceased, but also be able to communicate originally in response to new situations. Combining these technologies, one may be able to call up a 3-D image of your deceased grandmother and ask what she thinks of your new girlfriend. This paper will examine these technologies and their implications for end of life care and bereavement from a multi-theoretical perspective. As examples, it may allow the dying to finish unfinished business, and the bereaved to more vividly imagine their loved ones without a physical body. Ethical concerns about consent, privacy, and the emotional safety of those participating will also be discussed.
Case Study and Group Discussion
Reflections from our Death and Dying Group
Five years ago, we began an exploration of aging and dying, in an attempt to address more consciously and formally our own concerns of death. Like many in our age group, the topic was being commonly referenced, often through humour on the one hand or angst on the other. However, these conversations were brief, superficial and unhelpful. They provided no lasting content which would facilitate self- reflection or increase one’s tolerance for integrating the end of life experience. We wanted to educate ourselves about numerous aspects of this topic; but mostly we wished to look more intimately at the mystery of life and death, thereby dispelling some of its associated anxiety and fear. We decided these goals would be best served engaging with other contemporaries who were entering this stage of life. To the extent we could live out this life as fully and consciously as possible, we proposed that lifting the veil on death was a reasonable place to begin. This presentation will present some results from our discussions, and will allow an opportunity for group engagement.
The Girl Who Lived: The Case of Jahi McMath
Vincent F. Maher
Iona College, Hagan School of Business
In December 2013, a thirteen year old girl underwent elective surgery to correct a sleep apnea condition. The surgery was completed without incident. In the post anesthesia care unit, the girl awakened, talked and laughed with her mother and grandmother. She was later transferred to a surgical unit for routine post-operative care. At some point she coughed. The coughing triggered post-operative hemorrhaging that quickly devolved into a medical emergency during which time frame she became anoxic and sustained severe brain damage. She was transferred to a critical care unit. Within days, she was diagnosed as brain dead. Her family refused to accept this diagnosis. They refused to remove her from life support or to permit others to do so. Court interventions, news and social media exposure ensued. Fingers were pointed. What should have been a difficult but straightforward medical decision became a management, ethical and legal fiasco. Then it got worse. She was transferred to another hospital in another state and, three years later and based on new information, the determination of death was reversed by the very Court and Judge that had supported the determination of death! This paper tackles the issue of technology as a hindrance to rather than a facilitator of management in a healthcare environment. It also examines collateral issues thereof including organizational behavior, conflicts of law, and contemporaneous and post-event institutional marketing.
Presumed Consent for Organ Donation in England: Are We Forgetting Something?
University of Central Lancashire
Theresa May, the British Prime Minister, recently announced that her government will shift the balance of presumption in favour of organ donation in England. This will reverse the country’s decades-long ‘opt-in’ policy, and align it with the ‘opt-out’ policy not only of many countries in Europe, but also its neighbour Wales. With approximately 6,500 people currently on the UK transplant waiting list, the primary reason for the change is to increase the availability of organs – the shortage of which was reported to have resulted in the death of nearly 500 people who were waiting for a transplant last year (NHS Blood and Transplant, 2017). In the enthusiasm to catapult the issue into the political spotlight, one crucial matter seems to have been overlooked, either inadvertently or deliberately. And that is, how a diagnosis of death is made before organs are removed for transplantation. The government seems to assume that the current medico-legal definition of death (i.e. brain stem death) is immediately appropriate for the new policy without the need for public consultation and Parliamentary debate. This paper argues that the issue of how death is defined in the transplantation context, particularly when the donor’s consent is presumed rather than expressly given, is one which needs to be made clear to the public. The neurological criteria may not sit well with their conscience or religious and/or cultural beliefs, and they should be given the opportunity to choose an alternative definition of death (namely one based on cardio-respiratory criteria). In this regard, English Law should accommodate pluralism in the definition of death as in Israel, Japan and a number of states in the USA.
Explaining Physician-Assisted Dying and the Law in the United States
University of Redlands, Redlands, California, USA
The movement to legalize physician-assisted dying (PAD) in the United States focuses on a terminally ill competent adult (TICA) who, because of unbearable pain and suffering, seeks a physician’s assistance to hasten death. The movement is also about legal but objectionable end-of-life options. Advocates of PAD aim to legalize a modestly constructed option that allows a physician to prescribe a life-ending drug to a TICA who then self administers that drug to achieve a “humane and dignified death.” The fate of the PAD option is determined by state laws that criminalize assisted suicide.
This paper examines PAD and the law in the United States with an eye on the past seeking perspectives on three prospective futures. First, the Oregon model and effect. The first in the country to legalize PAD, Oregon’s law advances three fundamental principles: (1) the law applies to a modest few—only TICAs who can self-administer the death-inducing drug; (2) the law removes all references to suicide; and (3) the law codifies a rigorous set of safeguards designed to ensure that its practice will be “safe, legal, and rare.” Second, the Montana model and effect. The first to legalize PAD in the courtroom, Montana jurists addressed some of the most fundamental and enduring questions about the exercise of judicial power, and prominent among them: Is the courtroom an appropriate forum to make end-of-life policy? The Lawrence-Obergefell model and effect is the third prospective future. Are there reasons to believe that the Supreme Court might reconsider its landmark Glucksberg-Vacco rulings from 1997? While these unanimous rulings concluded that suicide and suicide assistance were not rights “deeply rooted in this Nation’s history and tradition,” the High Court has, since then, recognized fundamental constitutional rights to consensual same-sex sodomy and same-sex marriage and this despite “deeply rooted” animas to both.
Transformation and Exchange: An Ethnographic Study of Present-day Mi’kmaw Salites and Funeral Feasts
Memorial University of Newfoundland, Grenfell Campus, Canada
Mi’kmaq/Mi’kmaw, funerary rituals, gift economy, Indigenous beliefs and values, Indigenous peoples, Economic Anthropology, economic theory, ethnography
This paper examines a current set of funerary rituals among the Mi’kmaq of eastern Canada derived from both pre-and post-colonial practices. For the Mi’kmaq, funerals are one of the most important public social events which, increasingly in the late 20th and early 21st centuries, aims to address the financial demands associated with interment. Considered here are two specific Mi’kmaw traditions, funerary auctions or salites (pronounced sal/i/days) and funeral feasts, a combination of which constitute a field of social interaction and cultural expression, providing ritual contexts for individual and collective bereavement, social and economic supports, and the negotiation of social bonds that underpin present-day individual and collective Mi’kmaw identity and values. Importantly, this paper considers the ways in which Mi’kmaw funerary practices involve a complex combination of gift and commodity exchange that problematizes clear distinctions between these two forms of exchange, and defies Arjun Appadurai’s “politics of value,” while providing insight into how such economic practices influence social relations. In Mi’kmaw funerals, culturally-specific forms of feasting and gifting are combined with commercial enterprise resulting in exchange patterns that emerged as a response to pre- and post-colonial social and economic realities. It is argued that we cannot understand the ways in which Indigenous societies have initiated, and accommodated, social, cultural and economic transformation unless we address the ways in which theoretically-derived oppositions, as in the prevalent distinctions between gift and commodity, do not adequately reflect what exists “on the ground,” particularly in reference to the ways in which Indigenous peoples have creatively adapted and transformed traditions in order to navigate present-day economic realities. Significantly, the creative and adaptive forms of economic exchange considered here challenge some of the assumptions that form the very foundations of Western economic theory.
A Comparative Cultural Literature Review of Bereavement and Social Work with Malay Muslims and Japanese Buddhists
Nur Atikah Mohamed Hussin
Universiti Sains Malaysia
Malaysia, Japan, bereavement, literature review, indigenisation of social work, Islam, Buddhism, Christianity, forgiveness, continuing bonds
Current theories of bereavement discuss the nature of the relationships between the living and the deceased, with a particular focus on the notion of continuing bonds. Ideas about what continuing bonds should constitute vary significantly around the world. Under the medicalised Western model, continuing bonds are limited to psychological ties with the deceased, while for Asian peoples, such as the Malay and Japanese, continuing bonds can be defined by traditional cultural and religious beliefs. The understandings of continuing bonds seen in the Malay and Japanese societies present a challenge to professional support providers, including social workers supporting bereaved individuals in both countries. This study aims to answer the following questions: (1) With the literature on social work with bereaved people dominated by North American and Western European theoretical and empirical studies, to what extent have Malaysian and Japanese social work scholars accepted and tried to introduce the Western concepts of bereavement into their theory and practice, respectively? (2) What is the extent to which social workers work with the bereaved in Malaysia and Japan? (3) Are there any commonalities among the social work scholars of both countries who introduced Western practice? (4) How, if at all, has each country’s cultural and religious heritage been incorporated into their discussion of social work with the bereaved? The answers to these questions emphasise the importance of the ‘indigenisation of social work’— of taking into consideration the cultural and religious beliefs of the society social workers are based in. Malay Muslims, for example, highly value forgiveness as a means of continuing bonds with the deceased, and Buddhist Japanese observe specific rituals and practices when continuing bonds with their loved ones. Enriching social work practice with local, indigenous traditions and beliefs will increase the positive impact of social work with bereaved individuals in their societies.
Morbid Obsessions: Exploring the Ambivalence of Death in Medical Museums in 20th and 21st century United State
Johns Hopkins University, USA
death, medical museums, morbidity, ambivalence, Bodyworlds
The United States of the 21st century has been plagued by an image of morbidity that involves dying in hospitals and wasting away in supervised communities. Consequently, the discourse on death has shifted from the family to the medical setting, with the implication that the dying ought to be separated from the living, and that death can be considered failure. As a result, fewer people experience death in its entirety compared to those from two centuries ago; death is often considered a taboo subject that needs to operate in the shadows. However, despite death as taboo, death and disease are very popular topics for popular culture consumption. There is an unquestionable fascination with death. As such, this study uses news clippings and archival data from medical exhibitions of the United States to explore the duality of both disgust and fetishization of death in such environments. Three main themes have arisen within this project: the preservation of life after death, the creation of a new life after death, and the curiosity of death itself. This will primarily engage with the work of sociologist Tony Walter, historian Samuel Alberti, and philosopher Jay F. Rosenberg. I propose that the juxtaposition of death and illness is due to ambivalence. People are as obsessed with life as they are with the preservation of life after death; however, people are equally obsessed with death itself, especially the morbidity or the repulsion of objects in spaces that occupy death, such as medical museums and the international exhibition Bodyworlds.
Using Principles of Clinical Spiritual Care Counseling to Enhance Outcomes of the Interdisciplinary Care Team
Ocean Soul Renewal, LLC, Sausalito, CA
The art and principles of clinical spiritual care can unify and optimize care delivery for the whole hospice or palliative care team. Patients and families will benefit and the entire interdisciplinary group can enjoy better team cohesion and improved functionality with an understanding of these practices. As all end-of-life caregivers know from experience, being with stressed and grieving families and the terminally ill or actively dying patients requires more than good clinical expertise. So often we find ourselves unable to “reach” a patient or communicate with family members in ways that allow us to understand needs to create care plans and manage pain, nausea, anxiety, spiritual distress and family conflict. Science and art are both involved in communicating with a suffering patient or bringing the family members together to align palliative or end-of-life care goals. This presentation will introduce you to principles of spiritual care that all members of the care team can use in their practices and lives. We will explore the concepts of Spiritual Leveling and Vulnerability, Ministry of Caring Presence, Being in-the-Moment with Dementia, Flowing with Chaos, Active Listening, Compassionate Truth-telling, Emotional Hospitality, and Spiritual Care as Restorative Justice, as these practices pertain to end-of-life care.
You will leave this session with:
• An expanded ability to be in-the-moment with patients and family members to get the most out of your clinical interventions
• Understanding of some of the core principles of Clinical Chaplaincy and Spiritual Care Counseling
• A greater ability to “flow” with the patient and family in their need
• Enhanced ability to be vulnerable around pain and suffering without taking it home with you
• Increased Interdisciplinary Team effectiveness
Joe on Life, Death, and the Resurrection
Golden Gate University, USA
Joe has suffered from severe schizophrenia for almost a half century. He currently lives in an assisted living residence specializing in memory care. And this October he celebrated his seventieth birthday. I have been writing about my brother for around six years now.
Joe never brings up the subject of death directly. But it is all-important and ever-present; in what he says and in ways he lives one discovers a kind of landscape of what for me is a vision, a vision of life triumphant and death overcome. The vision is in motion, alive, with purpose, like an organism. These metaphors are for me a means of comprehension. But in Joe’s world there are no metaphors, only experience—experience of a world in constant renewal, of a world striving for ends of love, fashioned by God, resurrected and yet fully present—boundaries of time, present, past, and future, of life and death, appear to lose significance and strive for a happy transparency, as my brother meanders in a universe of timeless Love. This Love embraces him, planting in him promises, upon which he lives courageously and imperfectly in his present circumstances. I cannot listen to him and witness his life without being drawn into this world.
I have asked myself many times whether or not I am becoming just as insane as my brother. But insanity is a notion entirely out of place. Joe’s world of gratitude, forgiveness, giving, love, education, peace, of plateaus of human progress, real progress, of renewal and resurrection, reveal nothing but inspired sanity. In these times, when I sanely question whether or not humanity will relive the worst horrors of the prior century, I have no doubt that these visions deserve every measure of life. And so I bring my brother before an audience once again.
Dying at Peace: Processing Trauma as a Gateway to a More Resolved Death Experience
Storytelling, Trauma, Finding Meaning, Secondary Trauma
What defines a life well lived when life doesn’t look like the one that mass media and social media serves up to us? How does trauma attach itself to the dying process? How can the resolution of trauma lend itself to a more resolved dying process for the dying and those they leave behind? I’ll explore these questions in a presentation told in story.
Bio: Melissa Dodd is an actress and storyteller who unwittingly stepped into the role of psychopomp and funeral director at the age of 25. She brings her unique and humorous perspective to the consideration of death and dying, along with her background as an adoptee with epigenetic trauma, the survivor of her mother’s suicide and a violent crime survivor.
1) Processing trauma is critical to resolving one life’s work and feeling resolved at life’s end. Attaching meaning to trauma and the life story can aid in that work. Alternative therapies including virtual reality mediation and plant medicine may have a place in helping to heal trauma before or during the end of life process.
2) Creating the objective of a “resolved death experience” can be beneficial to those ambivalent about processing unresolved trauma.
3) Our siloed society highlights a need to do one’s own self work so that each of us trusts ourselves to both solicit help and take ourselves through the dying process.
4) Disrupters to the traditional American funeral industry will empower the dying and their loved ones – thus, mitigating some of the secondary trauma in the grieving and end of life process. Empowered estate planning can be of great benefit to finding a sense of agency and control – and can include everything from distributing possessions to stripping away ideas that weren’t ours to begin with.
The Identity of a Dying Self in The Death of Ivan Ilych and in Mrs. Dalloway
University of Lisbon, Portugal
Identity, Self, Memory, State of Consciousness, Death, Life, Space, Time
“I remember: I am sitting in the bathhouse, and a shepherd boy walked in. I asked: Who is there? – I am. – Who is I? – It’s I. – Who are you? – But it’s I…”. (Tolstoy, Diary, August 7, 1892).
The distinction between two states of consciousness, one of a man as an identity with a notion of the body, matter, space and time, while the other as one’s inescapable, spiritual self, forwards some of the main philosophical issues related with the theories of subjectivity regarding life and death.
The Death of Ivan Ilych, by Leo Tolstoy and Mrs. Dalloway, by Virginia Woolf, curiously depict the intensive communication between these two states of consciousness along with the complex psychological process of dying. For both Ivan Ilych and Septimus Smith, a key to the problem of death lies precisely in the shared perception of self and identity over time, experienced through the notion of discontinuity:
“Why could he see through the bodies, see into the future…? Scientifically speaking, the flesh was melted off the world. His body was macerated until only the nerve fibres were left.” (Mrs. Dalloway, 59).
Defining the “I” besides the biological limits of human life, even besides the notion of the individual as an identity, both texts struggle to grasp an experience of someone who is dying from within; nevertheless, the self-consciousness of the character as a social identity does not seem to cease completely, for the constant interaction between soul and body, the physical and the spiritual, present in both texts, serves as a foundation for the sense of a dying self:
“What one must never forget is that life is a constant process of dying.”
Be-ing with Dying
Fielding Graduate University, USA
being with, dramatistic pentad, dying, lifeworld, phenomenology, Schutz, young adults
Death comes to all of us at one point or another. In old age it is expected, in the young it is tragic. Regardless of the when, it is a process we all go through. How do we be with dying? How do we face it? How do we help another who might not be ready? This paper explores the phenomenon of what it means to be with dying through the application of Phenomenological protocol writings. The be-ing with can apply to another or to self. It encompasses the exploration of elements particular to the essential structure. It uses poetry and photography as a means to bring forth the elements & set the stage of be-ing with dying. An expansion of Phenomenology to include Kenneth Burke’s dramatistic pentad provides the basis to set the scene and provides entrée into the Schutzian structure of the lifeworld. The outcome is a glimpse into the lifeworld of a mother (case study) as she helps her young adult son come to terms with his mortality as he faces death due to terminal disease.
‘Tomorrow may be a good day’: Old Age in Jean Rhys’s Later Texts
Universidade de Lisboa, Portugal
While Jean Rhys’s protagonists have, from her earliest publications, been unfailingly recognized for their sense of alienation, inability to connect and self-destructive tendencies, her writing on ‘the fears and obsessions of the old’ (Staley, 1979) has been neglected. Short texts like ‘Sleep it Off Lady’ (1974) or ‘Close Season for the Old?’ (1975) speak from the simultaneously confined and free territory of old age. With different narrative strategies, they declare the writer’s awareness of impeding death and her failure to fight it. ‘You don’t realise that you will die soon because while you are alive this is inconceivable. But the knowledge is there, unconscious, hidden, supressed. Willingly or not you find yourself thinking: will I ever see another summer, another spring, ever do this, that or that again?’ (‘Close Season for the Old’). The old ladies in Rhys’s later texts are perhaps more unsettling than her former protagonists. And those who disdain her displaced heroines or disapprove of their ill-advised choices, realize that, at the end of the day, helplessness, decline and death are our common human destiny. Objectified by society, considered as no longer entirely human, old people hover in a kind of limbo between life and death. Because death is dreaded by the community, and the process of bodily and mental decay is felt as a threat, Miss Verney’s presence has become a sort of absence. Shunned by her neighbours she eventually becomes inaudible and invisible until it is too late. Her drinking and her books may have alienated them but being old and frail is the ultimate ‘crime’. Old age becomes the last site of marginalisation and isolation. As Diana Athill lucidly wrote: ‘Who else reported back from the frontier of old age with such clarity, speaking truthfully about being old (…)?’ (Int. to Collected Stories, ix).