Questions have been raised over a Federal Government-funded national roll out of an end of life care pathway in residential aged care due to a lack of evidence proving its effectiveness.
Dr Raymond Chan, a nurse researcher at the Royal Brisbane Women’s Hospital, said there was an urgent need to fund randomised controlled trials to measure the impact of end of life care pathways on patient outcomes before they are adopted in Australia’s health and aged care sectors.
The Australian Government is currently funding a national rollout of the Palliative Approach (PA) Toolkit which includes the use of a residential-aged-care-specific end of life care pathway.
“I do not agree with having the end of life care pathway rolled out widely before evidence showing benefits to patient outcomes is available,” Dr Chan told Australian Ageing Agenda.
“At the present, we don’t have conclusive evidence showing the benefits of the pathways.”
Dr Chan said if any intervention is to be rolled out in palliative care, it should be evaluated using robust research designs.
He said to date the only randomised controlled trial of end of life care pathways has been conducted with Italian cancer patients and it did not find any significant benefits for improving patient outcomes.
As Australian Ageing Agenda reported on Wednesday, Dr Chan first raised his concerns about the premature adoption of end of life care pathways in an opinion piece in the Medical Journal of Australia, in which he was also critical of Australia’s National Palliative Care Strategy, which endorsed a national roll out of care pathways across health and aged care.
“I don’t think we should encourage a national roll out based on the absence of evidence, particularly at a national policy level,” he said. “It makes further research very difficult and it also encourages the use of resources without robust evaluation. It’s important to ensure that the limited palliative care funding dollars we have are directed to interventions that we know are working.”
Last year the United Kingdom’s National Health Service withdrew the Liverpool Care Pathway following an independent review linking its implementation to poor care outcomes
Although recognising the pathway, when applied correctly, helped patients to have a dignified and pain-free death, the independent UK review said there were too many cases when the LCP was simply used as a tick box exercise.
Sector responds
Professor Elizabeth Reymond from the Brisbane South Palliative Care Collaborative and project director of the national roll out of the PA Toolkit agreed that randomised controlled trials were necessary but said there was also sufficient evidence available from initial studies of the Residential Aged Care End of Life Care Pathway (RAC EoLCP) to support its inclusion in the PA Toolkit distributed to the sector.
“Randomised controlled trials are our gold standard of good care and we need every aspect of medicine to undergo randomised controlled trials, but to date there simply hasn’t been the funding available to conduct this expensive and complex research,” she told AAA.
Professor Reymond said it was also necessary to first demonstrate the value of conducting an expensive randomised controlled trial for a particular intervention through smaller, lower level studies, such as the evaluation of the PA Toolkit to be conducted by Associate Professor Deborah Parker from The University of Queensland/Blue Care Research and Practice Development Centre.
“The fact is you can never gather enough evidence, but how long do you wait for a randomised controlled trial before you to try to improve outcomes, especially when the consensus is that the quality of end of life care in residential aged care needs to improve right now?” said Professor Reymond.
Kris McAnelly, a nurse practitioner with Brisbane South Palliative Care Collaborative, who is also part of the team leading the national roll out of the PA Toolkit, said that unlike the roll out of the Liverpool Care Pathway in acute hospitals in the UK, implementation of the RAC EoLCP in Australian residential care facilities is well-supported by training and educational resources for staff that emphasises the importance of communication between residents, families and staff.
She said the end of life care pathway also forms part of a three-step, staged approach to the implementation of a palliative approach, including advance care planning, palliative care case conferences and the care pathway.
A supportive framework including the establishment of dedicated Palliative Care Link nurses, as well as links to specialist palliative care services and GP support are also unique to the Australian adaptation of the LCP.
Professor Reymond said the UK review highlighted that problems arose with the LCP when that care pathway was misused or poorly implemented which is why the Australian roll out has emphasised a supportive framework.
Currently 315 residential aged care facilities across Australia are registered to use the RAC EoLCP as part of the Australian government-funded roll out set to continue until 2015.
The national roll out of the PA Toolkit is led by the Brisbane South Palliative Care Collaborative in partnership with The Australian and New Zealand Society of Palliative Medicine, Leading Age Services Australia, The Royal Australian College of General Practitioners and The University of Queensland/Blue Care Research and Practice Development Centre.
