Full Program Friday 8th June
8.00am Arrive and register
9.00 - 9.30am
Death literacy: Everyone's talking about it and that's a blessing and a curse!
There is growing national and international interest in death literacy, indeed it has almost become part of everyday language, showing its potential as an agent for change. But what does it mean; how do people develop it; how is it connected to the growing compassionate communities’ movement and how can we avoid it being co-opted and corrupted? I will explore answers to these questions and discuss some of the emerging results from the first population based survey of death literacy, the Death Literacy Index, and how these might challenge and inform what we are doing and how we are doing it.
9.30 - 10.00am
Shifting community understandings of palliative care: How can we transform experiences of care within health systems?
Population data from Australia detailing the care of people with serious illness suggest a picture of missed opportunities - late patient and family engagement with palliative care, a majority of deaths occurring in the acute system, and limited conversations. This presentation will examine patient, family and community perceptions of palliative care and their preferences for communication. It will explore opportunities to reframe narratives around palliative care and empower community to transform their own experiences of care within health systems.
10.00 - 10.30am
Fear Less. Live More. We’re All Going To Die.
10 out of 10 of us are going to die. This revolutionary statistic flipped Stefan Hunt’s life upside down in 2015 during a dark chapter of anxiety. You see, Stefan’s mortality drastically shifted his perspective on his deep fear of the unknown and inspired him to start living life again. Two years later in November 2017, he launched ‘We’re All Going To Die’, a multimedia project that consisted of a short film, illustrated book and immersive arts festival. Through performance, panel discussion, music, art, film and interactive experiences the festival sold-out, attracting 1400. The timing was bang on, young people spent the evening talking about fear & death, and how those themes can empower us to live our most radical life. The response has been phenomenal and the project has transformed into an arts collective.
Concurrent Sessions 4 Sessions.
11.00 - 12.30pm
LUNCH 12.30 -1.15
1.15 - 1.45pm
Palliative care - the new essentials.
It is the combined efforts of specialist and generalists, compassionate communities and the civic component of end of life care as contained in the compassionate city charter, that help to address the support that is needed for those undergoing the experiences of caregiving, death dying and loss. We will examine each of the key components of these essentials and look at how this might be implemented as a unified programme of palliative care, transforming palliative care services at the same time as providing equity of care to the unifying experiences associated with death.
1.45 - 2.15pm
Understanding and strengthening families in their end of life caregiving work: the New Zealand experience
Family members provide the bulk of palliative care and whilst end of life caring and support can be a rewarding experience, it can bring costs in terms of psychological, physical and economic wellbeing. Family members also often feel that their critical role is overlooked and unsupported by health professionals and systems. Addressing the support needs of family members had been identified as a priority within the context of the significant predicted rise in people living with life limiting illness in most countries. Our research has taken a different approach to most previous work exploring the needs of families involved in end of life caregiving work. We work collaboratively with families and communities, and use innovative social research methods, to illuminate the complex experience of caregiving and the extent to which this experience is gendered and culturally situated. We have also been working collaboratively with families, whānau and communities to develop new caregiving resources which I will share in this presentation.
Concurrent Sessions: 4 sessions
2.15 - 3.15pm
3.30 - 4.00pm
Volunteering in community: Re-thinking rules and boundaries in palliative care.
This session explores the results of research conducted in the UK with volunteers from independent hospices visiting dying people at home. The research shows how visiting dying people in the community can provide transformative experiences in terms of how volunteers think about life and learn to cope with multiple deaths. However, it also suggests that a volunteer community service based on companionship and friendship does not necessarily fit with a rigid, heavily regulated hospice system, however well-meaning that regulation is.
This session will draw on the stories of volunteers and systems theory to argue that there is a strong case for an alternative approach to be considered, where hospices work from the premise that home visiting need not be constrained by professional rules. In exploring these ideas Barbara also draws on her own experience over the last seven years of developing Hospice Neighbours in Suffolk.
4.00 - 4.45pm
Desegregating Deathcare : Innovation or Invocation?
In recent decades, communities, health workers, local businesses, families and individuals have been collectively revising the story of death and dying in contemporary society - from one of medically driven and increasingly corporatized care, to one of community responsibility and inclusion. Author Charles Eisenstein names such systems-level narrative shifts 'a transition from a story of separation, to a story of interbeing'. Informed directly by grassroots and community responses to death and dying, a Queensland Children’s Hospice is inviting the families they serve to co-author a truly integrated approach to death care. In this emerging story of innovative care at Hummingbird House, families are being empowered to participate across the whole spectrum of death and bereavement; from after death care, to DIY funerals and community grief rituals. Staff are combining best practice clinical care with the cultivation of compassionate presence and service. A growing team of volunteers, support staff and families are reaching out beyond the hospice walls with an aspirational vision to see death desegregated.
4.45 - 5.00pm Closing remarks.