Providers are neglecting VAD despite obligations
Residential aged care providers are failing to meet their obligations on providing comprehensive information and access to VAD, a first-of-its-kind for Australia report finds.
Not-for-profit organisation for promoting choice at end-of-life Go Gentle Australia has published a new report in partnership with peak body Older Persons Advocacy Network on how residential aged care providers are responding to voluntary assisted dying laws.
The report, which is the first-of-its-kind for Australia, found 85 per cent of the 72 residential care providers involved in the report do not offer VAD access to residents or do not offer public information about it, despite VAD laws being passed in every state and in the Australian Capital Territory.
Just 5 per cent of providers provided comprehensive information and full access to VAD, with faith-based providers found to be four times more likely to reference it on their websites but with information being limited to or focused on their non-participation in VAD.
Despite being the first states to pass VAD legislation, Victoria and Western Australia had the lowest quality of information available, but as noted in the report, their VAD laws do not have explicit requirements for providers to provide information.
Meanwhile in South Australia, Queensland and New South Wales, where there is an obligation to inform the public if VAD is not available, information was of poor quality.
Go Gentle Australia manager of policy and advocacy Frankie Bennett told Australian Ageing Agenda that while difficult to speculate, they believe providers may be displaying poor-quality information – if at all – due to the stigma attached to VAD.
“However, we know that consumers often have these questions,” Ms Bennett said. “And we also know that to get our wishes respected at the end of life, it’s really important to plan ahead. To talk about it with loved ones and make sure the people caring for you understand who you are and what you want.”
Ms Bennett added that they hope the report will be a catalyst for change.
“VAD has been legal for up to six years in some jurisdictions. Our message to VAD providers is clear: It’s time to engage, and we have resources and support to help you do that,” she said.
Ms Bennett also noted that as an advocacy organisation, they hear a lot of stories about good deaths but also hear about bad ones where things haven’t gone to plan.
“We undertook this research because we were receiving reports from families whose loved one had not been able to access VAD in their aged care facility, and they couldn’t believe it,” she explained to AAA.
“What really surprised us was the low response rate we got from providers – 44 per cent did not respond to our requests for information about VAD access in their facilities, even after three direct requests.
“It made us realise how hard it is for people in aged care and their families, or people looking for a home, to get a straight answer about their end-of-life choices.”
Two providers were featured in the report as examples of best practice, Uniting ACT.NSW and Tasmania’s OneCare, but other provider names were excluded in recognition that the sector is undergoing a period of major transition.
Go Gentle Australia intends to repeat the research within a year and all providers and their results will be made public.
Report findings ‘disturbing’
Go Gentle Australia chief executive officer Dr Linda Swan said the report findings call into question how some providers are complying with the requirements of state VAD laws or their duties under the new Aged Care Act.
She explained the purpose of the report was to investigate what information providers are making available and encourage transparency so that older people can make informed choices.
The intention of publishing the findings is not to condemn residential care providers, Dr Swan added, rather it is to highlight best practice and work constructively with providers.
Dr Linda Swan said the results in the report are “disturbing,” and that older people have a legal right to know about VAD, where it is available and what support they will be offered at the end of life.
“This report strongly suggests that this is not standard practice in residential aged care but it must rapidly become so,” she said.
Dr Swan added that she has heard of frail and sick residents needing to move to different care homes to access VAD and of families angry that their loved ones had suffered unnecessarily because the information was offered too late.
“Older people have a legal right to know their options at the end of life, including VAD. And they have a right to know this information before they choose the facility that will become their home,” she said.
“They can rightly expect that the people who run residential aged care facilities will adhere to statutes and guidelines put in place to protect their choices and consumer rights.”
OPAN CEO Craig Gear agreed, saying older people deserve clear and upfront information so their dignity and rights can be upheld and that OPAN will continue to work with providers and regulators to improve transparency and support best practice.
“Residential aged care is someone’s home. This is not about taking a position for or against VAD – it’s about giving older people and their families the clarity they need at a deeply personal time,” he said.
“In rural and regional areas, moving to access VAD can be harmful and unrealistic. Clear information from providers helps older people avoid distressing, unnecessary transfers.”
The report makes three recommendations for providers:
- provide publicly accessible VAD information that is clear, up-to-date and tailored to the needs of older people
- provide a clear public explanation of the level of VAD access the provider can support on-site
- implement an appropriate VAD policy – including procedures, practices and adequate staff training.
The report also recommends state and federal governments and any other relevant agencies investigate and encourage providers to comply with the legislative and regulatory obligations.
The full report can be read here.
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