Anna Law, Project Lead, End of Life Care, Integrated Care recently attended the 2018 Building Death Literacy Conference in Sydney in her capacity as the local Groundbreaker Community Representative.
Compassionate Communities is a whole of community approach to end of life support where caring for one another at times of need, loss and/or crisis becomes the task and responsibility of everyone.
At the heart of this movement for change, is the adoption of a whole of community approach where formal care provision and informal support networks come together to provide support for people who are dying and grieving.
This two day conference brought together individuals and groups working in the health space and on community initiatives with the aim to develop critical awareness and skills in:
- Community engagement and community development
- Social networks and capacity building
- Partnerships and collaboration
- Evaluating change
The conference was informative and relevant to the range of different professions and community members who attended. Anna reflected on the main points taken from the conference:
- Death is not a taboo topic – people are talking about death.
- Vulnerability is a taboo – this is what we are not talking about. It is taboo to be vulnerable.
- Research shows that we are better able to navigate the funeral system than the health system. People need support to navigate the health system.
- Humans are capable – we need a strength based, or capacity building approach. TINA (There Is No Alternative) approach.
- 3 C’s – Connection – Communication and Change.
- There is no quick fix – this is planning for the long term with complex problems.
A variety of key note speakers presented talks which Anna summarises below:
Dr Anna Collins (Uni of Melbourne Research Fellow) – How to Transform within a Health System:
Why are services engaged so late in end of life care?
There is a lot of misperception around Palliative Care (PC). Some see it is an end to possibility, hope and survival, choice is limited to ‘euthanasia’ or dying in ‘the system’. “…the hospital says you are going to die and then put you somewhere”. There is education opportunity with these misperceptions.
How we should talk about PC and death in the health system – people want:
- to introduce PC early
- to first raise the term PC in third person
- educatation around tasks of PC
- endorsement of PC
- to be given time and space
- prompt open discussion
- to discuss PC in response to individuals needs raised
- to have the courage and willingness to be uncomfortable talking about death
When talking about dying people wanted:
- to clarify how much they wanted to speak about dying
- to use the terms “death” and “dying”
- spoken acknowledgement of when death is near
- direct language – avoid euphemism
- to speak about death with both the carer and patient present.
Stefan Hunt – Director/Artist: Fear Less. Live More. We Are All Going to Die:
We’re All Going to Die See website for Stefan’s video and information on his festival.
Dr John Rosenburg, Dr Claire Hepper, Dr John Ednacott – Working with Communities Around Death and Loss:
System hindrances such as:
- inadequate funding for basic PC including medications
- navigating the complexity of the health care system
- inflexibility to access resources
- insurance coverage excludes homecare
- under resourced and busy hospital
Organisation hindrances such as:
- paternalistic practices
- withholding information
- risk aversion
- poorly co-ordinated multiple services
- GP excluded once PC involved.
Organisations can help such as:
- PC vital to home care
- co-ordination of services
- communication of services
- providing single point of contact
- provide bereavement support
Practice hindrance such as:
- pressure to admit to hospital
- discourage/obstruct discharge
- GP reluctant to refer to PC
- information about practical care inadequate
- inconsistent access to around the clock services
Individual hindrances such as: disinterest of GPs to deliver PC at home, blaming of carer by GP staff for difficulties with home care. Individuals can help with: compassion, listening, caring, integrity, dedication, welcoming, untroubled, going above and beyond, GP is ‘one of many helpers’ on equal footing.
Shannon’s Packs:
This initiative was formed in 2015 in response to a patient’s story; Shannon was a 17 year old person with terminal cancer who came home to die and lived “out of area” for 3 different Palliative Care Services. Her story was identified as a black spot which led to the development of Shannon’s Packs. These packs were developed and are now used widely in the area (rural Victoria):
Staying Connected- Compassionate Communities In Residential Aged Care:
Presented by Helen Emmerson (Southern Cross Care), Stella Hristias (The GroundSwell Project), Marguerite Kelly and Prof Rosemary Leonard (Western Sydney University)
The presenters described the 10K project, a unique partnership between aged care provider, Southern Cross Care, Western Sydney University and community development expert, The GroundSwell Project.
A residential aged care facility (RACF) is transformed from a place of care into a hub where relationships and inter-generational learning thrive. Being connected, having a positive identity and continuing to contribute to the fabric of society are all essential to positive healthy ageing and overall life satisfaction.
Complex problems cannot be addressed by simple solutions, best practice or even good practice. Complexity requires long term partnerships to work with the unpredictable and emergent change. The workshop explored the experiences of the organisations as they worked towards developing a compassionate community within a 10km radius of a group of RACFs. Unlike other partnering projects where the community come into the RACF, this projects extends the concept taking the RACF staff, residents and their families out into the surrounding areas and organisations.
The organisations and individuals combine their unique strengths to develop insights and actions to re-develop ageing in place.
Barbara Gale: Volunteering in the community – re-thinking the rules and boundaries in palliative care:
This session explored the results of research conducted in the UK with volunteers from independent hospices visiting dying people at their homes. 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.
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.
Elham Day: 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.
Pictures sourced from the Groundswell Project website (c) 2018