What are the policy considerations for integrating medical and social care to transform the way we care for older Australians at the end of life?
The Churchill Trust provided fellows an opportunity to present new policy ideas to the Australian parliament and I was selected as one of those fellows in 2022. My peer reviewed policy paper was launched at Parliament House in November of that year. It proposes that the Australian Government, at all levels, collaborate to begin addressing this problem which is only going to worsen over time. This policy paper explores the development of a policy framework to support the integration of medical and non-medical services and supports at end of life, taking a holistic and community-based approach to supporting people at the end of their lives.
What might it look like if policy makers and service providers took an active lead with this approach?
Why would we do this?
As many as 70% of Australians want to die at home and yet comparatively few achieve that. Overwhelmingly people are not achieving the end of life they desire. Australian society would benefit from community-centred and family-focused approaches to both the care of the dying and the dead, and the integration of these with existing health care approaches. By 2066, it is estimated there will be more than 430,000 deaths per year, compared to about 163,300 deaths registered in 2020. Not only is Australia’s population ageing, but so is our workforce. There are many state based and national frameworks, palliative care principals, reports, commission findings and enquiry results and all of them acknowledge the need for informal and social services and supports to be available and accessible alongside medical supports in end-of-life care.
And, You don’t know what you don’t know?
except for…
- 2014 Grattan Institute Report
- 2017 Australian Productivity Commission report
- National Palliative Care Principals
- Australian Commission on Safety and Quality in Health Care
- Royal Commission into Aged Care Quality and Safety
So, we have been told in various ways in the last decade that there is a need for formal and informal – medical and non-medical – services at end of life.
What’s the problem then?
There is no public policy in Australia for the integration of formal & informal service in aged care or end of life.
We have failed to follow up with policy on exactly how institutions, medical service providers, community care providers… how anyone actually does that.
My paper proposed to bring together both medical and non-medical stakeholders to co-design a holistic client-centred policy approach which includes:
- investigating the infrastructure needs to adequately support people to die at home, meaning, at-home services and with end-of-life doula support;
- developing the resources and education required to support families and communities who choose community and family led home funeral and after death care;
- formulating strategies to promote the inclusion of end of life doula services as part of aged care and Care packages; and
- expanding the scope of existing death literacy and advance care planning programs and services to include the non-medical supports for end of life care, such as end of life doulas and the option of home death care and home funeral.
There are several ways in which formal and informal services can be integrated to the benefit of the community, this can sometimes mean a re-working of policy and approaches. This can include the engagement with compassionate communities, mobilising volunteer and wider community networks, collaboration with other charities and organisations – often it is about listening and then taking steps to rewrite policy, reconsider direction and rethink service provision. So far, this project has received bipartisan support from politicians on both sides of politics in State Government within Australia, and discussions are now being had as to how this can be trialled on a State level. Additionally, there is an aged care provider considering the re-write of their policies to include an integrated, holistic approach to living and dying in aged care.
This policy initiative of integrated end of life care is an Australian first. There is widespread acknowledgement that a flexible, holistic and dynamic approach is needed if we are to face the challenges the end of life sector faces in the next 25 years. Already, governments and industry have acknowledged the need to include both medical and non-medical approaches in order to provide the best care possible to clients.
It is now time to consider how exactly we do this.
Together.
