An essential first step in our ELDAC journey was to identify the needs and challenges currently experienced by aged care providers when delivering palliative care and advance care planning. From QUT, we distributed an online survey to aged care services via the mailing lists of the peak bodies – LASA, ACSA and CHA.
Who did we hear from?
We received 89 responses from across the country, with 71% in major cities, 22% in inner regional, 2% in outer regional and 5% in remote areas. Respondents were mostly from NSW (28%), QLD (27%) and South Australia (22%). Nearly all respondents (91%) indicated their organisation provided residential aged care, and over half (56%) indicated respite care was offered. Between 30-40% of respondent’ organisations provided home care (including home support, home care packages). The majority of respondents were either managers (68%) or Registered Nurses (28%).
What were the top 5 resources required?
63% - ACP (process and legal issues)
63% - clinical support for palliative care
60% - accessing Specialist Palliative Care (SPC)
48% - support for families of clients
44% - emotional/spiritual support for clients
In their own words
Linkages with SPC providers and GPs was important for aged care providers. Some commented on the benefits of working in a multidisciplinary team and access to SPC and GPs.
“Success is dependent on a range of services interacting including but not limited to GPs, funeral homes, specialist clinical services and home care providers”
“How valuable I find our multidisciplinary team instead of working in silos. I mostly feel I have access to a wealth of information”.
Others were worried about lack of access to medical support, particularly GPs.
“You cannot give good palliative care without a good GP supporting you and these GPs are few and far between”
"Over weekends or public holidays…support from public hospitals would be beneficial”
Participants working in regional and remote areas reported unavailability of services or barriers to referral:
“Services are not available in the regional and remote areas”
“On the weekends and public holidays there are no specialist services available in regional areas like in my town. It becomes extremely difficult to manage the resident on these days”
There was also concern with the type of care support offered.
“Lack of understanding of GPs of their role and the need to take time with the process”
“Staff in Aged Care at our facility are very capable and trained in providing care to meet the residents’ needs. This is underestimated. SPC needs to provide a supportive role when requested and not assume higher knowledge.”
Continuity of care was an issue.
“Most elderly patients wish to stay at home to pass away, however, a defragmented [sic] care planning system quite often has them end up passing away in EMD or a hospital ward”
“Sometimes we have clients that are end of life but don’t want to change providers just to access palliative care.”
Lack of funding and insufficient staffing was a common barrier in delivering palliative care and ACP.
“Facilities need to be funded to provide this care…family meeting, advanced [sic] care planning takes time and needs to be revisited as goals of care for residents change continuously…we actually need people to be able to provide the care”
More support and education for family members was also raised.
“Often family gets no support when [a] resident [is] on palliative care, no meeting to discuss how they are coping/any extra support required”
Confusion relating to the legal processes integral to ACP was also addressed in some comments:
“Laws surround[ing] ACP have changed but little information is available. Confusion as to who can witness or sign”
“With all the changes I think there should be more marketing and easy access to information for all involved”
It’s clear that the ELDAC project will be addressing a range of issues for aged care services. The ELDAC website and toolkits are designed to support primary and aged care services to provide skilled and appropriate advance care planning and palliative care, developing collaborations and building capacity.
Our thanks go out to those who responded to the survey – a full research report will be available soon. For more information and to make contact with the ELDAC team, go to the website at www.eldac.com.au
Dr John Rosenberg (Research Fellow),
Karen Clifton (Project Coordinator (ELDAC)),
Professor Patsy Yates (Head of School), School of Nursing, Queensland University of Technology