Written by RePaDD member, Kate Swetenham, Clinical Lead for End of Life Care in the South Australian Department for Health and Wellbeing. Kate has responsibility for providing clinical leadership to the work streams of Palliative Care, Advance Care Directives and Voluntary Assisted Dying. Kate is also the Chair of the Bereavement Advisory Group from the Palliative Care Clinical Network.
Background
With the COVID-19 Pandemic there has been an opportunity to bring bereavement care back to the policy agenda. Even if the death rates from COVID-19 remain low, the ageing population is predicted to contribute to an exponential rise in deaths from 2025 as the baby boomers age and die [1].
The impact of the associated COVID-19 policies will leave a negative legacy for those bereaved who did not get to say goodbye or be with loved ones due to state border closures, hospital visitation restrictions, and the loss of death and bereavement rituals [2].
In South Australia specialist palliative care services are the only health services funded to provide bereavement care. In 2017 the Palliative Care Outcomes Collaborative (PCOC) data showed that 14,274 people died, and of those that died 60% were regarded as predictable. South Australia recorded a hospital death rate of 43% with 10% of those hospitalised patients having PCOC data collected, which suggests specialist palliative care involvement. Thirty percent of South Australians died in Aged Care. For many South Australians dying in hospital or the community there is no bereavement service as the death occurred without the support of a specialist palliative care service.
Purpose
The purpose of the Statewide Bereavement project is to support a “healthy” state population with respect to grief and loss associated with death and dying. In the previous South Australian Palliative Care Services Plan 2009-2016 there had been a bereavement strategy proposed to reduce bereavement related mortality and morbidity that had not been realised. The bereavement agenda was to consider the following;
- A new community of practice
- A peak body to steer development of community services
- Development of mixed specialist and generalist community-based services
- Health promotion
- Capacity building of primary health workers.
In 2021 a Statewide Bereavement Plan must account for;
- The COVID-19 environment
- Adults dying from a sudden death, suicide and voluntary assisted dying
- Neonatal and Paediatric dying ranges from, perinatal death, stillbirth, sudden infant death syndrome, paediatric trauma and Teenage suicide
- Palliative care patients in both adult and paediatric settings
- Frail older persons, within aged care homes and those living in the community.
Methodology
The Bereavement Advisory Group undertook a mapping exercise to identify what grief and bereavement services existed in 2020. There was variation between the individual palliative care services in how they managed bereavement care but there was consistency in that all adult bereavement services refer clients to their General Practitioner (GP) for ongoing support.
The paediatric bereavement service refers to broader clinical groups in recognition of the specific needs parents and siblings have following the death of a child. Child psychology is identified for siblings, the use of art therapy has a significant role to assist emotional expression, and other considerations such as specific counselling services for families with children with autism are just a few that support families and children through loss and grief.
Results
The mapping exercise revealed that there are limited grief and bereavement counsellors for adult services to refer people onto. Most specialist palliative care bereavement services refer clients back to their GP. There is no formal bereavement support offered during the acute phase ie the time from death to funeral.
The bereavement advisory group membership was amended to reflect identified gaps. The membership as identified below now includes private counsellors and the Funeral Directors Association.
- Bereavement Coordinators (Adult and Paediatric) from the LHNs
- Funeral Directors Association
- Private Grief Counsellors
- GriefLink representatives
- Regional Social workers
- Palliative Care SA
- Commission for Excellence and Innovation in Health, and
- Department for Health and Wellbeing
The Bereavement Project
Flinders University, GriefLink, Palliative Care SA and the Department for Health and Wellbeing collaborated on the development of the project plan.
Flinders University conducted a mapping exercise to identify the existing bereavement resources which has led to the development of the Online Bereavement Portal, now available on the Department for Health and Wellbeing website. Flinders University also conducted a survey of GPs to understand how they manage patients who present with grief and bereavement related concerns.
GriefLink have expanded their website which provides written bereavement web pages, by adding audio pages to increase accessibility to the community.
Palliative Care SA has been exploring the role of compassionate communities and testing Death Café’s in the Onkaparinga and Tea Tree Gully local council areas.
The Department for Health and Wellbeing engaged the University of South Australia to assist this work by undertaking a formative assessment of compassionate communities in 2021. The University of South Australia undertook a synthesis of the published literature and stakeholder interviews to understand the enablers to communities stepping forward to provide support and assistance to its members at times of loss and grief.
Next steps
The Bereavement Advisory Group will consolidate the bereavement project work undertaken over the last 18 months to inform the framework for a Statewide Grief and Bereavement Plan.
There will be a focus on enhancing primary care providers’ awareness of ‘at risk’ individuals so that complicated grief is recognised and appropriately supported. Acute hospitals will be supported to recognise the role of assessing bereavement risk so that bereavement services are available to those dying outside of specialist palliative care services.
Partnerships with Local Councils to further extend work already underway such as Death Cafes, will bring the support to the community provided by the community, thus normalising the grief experience and promoting the uptake and further development of compassionate communities.
References
- Australian Bureau of Statistics: Death, Australia, 2008 (cat.no.3222.0)
- Mayland CR, Hughes R, Lane S, McGlinchey T, Donnellan W, Bennett K, Hanna J, Rapa E, Dalton L, Mason SR. Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic. Palliat Med. 2021 Sep;35(8):1480-1491. doi: 10.1177/02692163211019885.