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Moving into an aged care home can mean many changes for residents’ routines, surroundings, and mealtimes. What shouldn’t change, however, are residents’ rights to make their own decisions when it comes to end-of-life care. This includes voluntary assisted dying, or VAD.
VAD is legal in all states and the ACT, allowing an eligible person to ask doctors for medication to end their suffering. Last year, more than 3,000 people died this way. People who choose VAD have told us it offers them choice, control and an “insurance policy” for their final weeks if their suffering becomes too much.
However, according to Go Gentle’s report Voluntary Assisted Dying in Residential Aged Care Homes, many homes do not provide any public information about residents’ legal right to voluntary assisted dying.
Residents are often told they need to go to a hospital or another facility to access VAD, which can be very challenging for someone in the final weeks of life.
The vast majority of people who apply are aged over 75, yet our research shows two-thirds of aged care providers in Australia publish no information about VAD. Nearly three-quarters offer no clear access or they have complex policies, which confuse rather than clarify.
Residents are left uncertain about what will happen if they ask about VAD – at one of the most vulnerable times in their lives.
Finding out too late that an aged care home won’t support a VAD choice can have serious consequences.
At Go Gentle, we have heard from families forced to move frail, dying parents out of their aged care home for their eligibility assessments. Others have been told they cannot keep their VAD medication onsite. Some have encountered staff who insert their personal beliefs into deeply private medical decisions.
We heard about Judy, aged 87 and dying from cancer. Her faith-based aged care home in Sydney insisted she leave the premises if she wanted to have VAD, despite her frail 32-kilogram frame, bedsores and painful rheumatoid arthritis.
Another faith-based aged care home in Victoria refused to allow a VAD doctor to enter the facility to do a VAD assessment, even though the elderly woman was dying of cancer. “There was no choice but to transfer her back to hospital,” the woman’s daughter told us.
And then there’s Annie, in her 80s, whose faith-based care home in regional NSW asked her to leave the facility for her VAD assessments despite being in the final stages of cancer and only able to be moved from her bed by a hoist. Only after significant pressure from her daughter, a registered nurse, did they relent.
“Someone needs to educate aged care facilities about their obligations to residents,” her daughter told us. The aged care facility was Annie’s home. To have her health choices dictated by management is not only ethically wrong, but it also contradicts the new rights-based Aged Care Act which is supposed to place people at the centre of their aged care.
Guidance from the Aged Care Quality and Safety Commission is clear: “Older people have the right to choose to access VAD in their home… This applies even where the provider has made the decision not to participate in the VAD process”.
To make informed choices, older people need to know their options. They need clear information in plain language that tells them what they can expect from their aged care provider – and ideally they need to know this before they move in.
To help prospective residents make informed decisions, Go Gentle has rated 70 of the largest residential aged care providers in Australia on how they support people who choose VAD, and published the results online in a free, searchable database. We have also published a guide that steps people through what questions to ask an aged care home if they are considering VAD.
Realistically, many people choose an aged care facility based on factors such as proximity to family, budget and availability rather than religious values. We need to respect residents’ choices at the end of life and ensure they have the information and support they need.
Dr Linda Swan is the chief executive officer of Go Gentle Australia, a national charity advocating for fair and equitable access to end-of-life choice, including voluntary assisted dying
Find more opinion articles here – and if you have an opinion to share on something topical in aged care, get in touch at editorial@australianageingagenda.com.au
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