During National Palliative Care Week (21-28 May) Palliative Care Australia is applauding residential aged care facilities that go the extra mile to provide exceptional end-of-life care. Below, we explain how two isolated rural homes in Victoria have worked consistently over years to better recognise dying, provide early symptom relief and reduce avoidable hospital admissions. 

People who die at Yarriambiack Lodge don’t just get wheeled out quietly through the back door. With family approval, they exit with simple ceremony through the front door of their aged care home in Warracknabeal, north-west Victoria, ensuring staff and other residents have the chance to say goodbye.

Shortly after the undertaker arrives at the 60-bed high-care home, run by Rural Northwest Health, an announcement is made over the public address system, indicating who will be leaving the building for the last time. And in a gesture of care and loving, a beautiful handmade patchwork quilt is draped over the concealed body on a trolley.

Those with a connection can then opt to stop work and join a guard of honour in the foyer to say farewell. Administration staff, kitchen staff, clinical staff and the CEO join residents, and sometimes friends and family, as music, thoughts and memories pay respectful tribute to the deceased.

Warracknabeal Campus manager of aged care, Wendy Walters, says while the concept initially had its detractors, it has become widely valued by both residents and staff, who often have close ties formed over generations. Warracknabeal is home to less than 3000 people, significantly shrinking the standard concept of ‘six degrees of separation’.

The openness with which death is acknowledged at Yarriambiack Lodge is consistent with the way end-of-life is approached, both here and in nearby Hopetoun. At Hopetoun, an isolated town of 550 people, another 24-bed aged care facility is also operated by Rural Northwest Health.

Wendy says 95-100% of residents have up-to-date advance care plans, reflecting a willingness to take responsibility for residents’ end-of-life care and to actively plan for it. A breakthrough in achieving this came through a Decision Assist grant, which funded link nurses. Their role is to link general practitioners, specialist palliative care services and allied health professionals. They also review advance care plans, organise family meetings to discuss each resident’s goals of care, and make early and appropriate referrals to specialist palliative care services when required.

Link nurse staffing has shifted over time and now sits at eight hours each week. Wendy sees huge value in having the responsibility vested in a dedicated staff member, who has expertise in discussing end of life with residents and families, rather than expecting all staff to be able to do it well.

“Before we got the grant people would say that we did palliative care well, but I didn’t feel we did it consistently well,” says Wendy.

“We all get busy and caught up in everything else, so I think we have to be careful to make sure there is a specific person who can do advance care planning and have discussions with families about palliative care.”

The link nurse other staff have also learned about advance care planning and a palliative approach from visiting aged care resource nurse, Sharon Gibbens.

Sharon is employed by the Grampians Region Palliative Care Consortium to embed a palliative approach in each of the region’s aged care facilities. This includes the Residential Aged Care End of Life Care Pathway, which is a national structured plan designed to guide end-of-life care. It’s valuable learning that Wendy says would have been difficult for the isolated facilities to achieve without Sharon’s visits, local workshops and phone support, as sending staff to city-based courses is prohibitively expensive.

Sharon has worked with all staff – not just registered and enrolled nurses – to help them better understand dying and identify when a resident’s health might be deteriorating and entering a terminal phase. Wendy says some personal care attendants, cleaners and cooks spend more time with residents than clinical staff, leaving them well placed to notice and report changes. As a result, quality of life for residents has improved, as symptoms are managed and treated earlier, which in turn has reduced avoidable transfers to hospital.

“Importantly for the clinical staff is that we are now recognising deteriorating residents more of the time and we are getting palliative care approach 100% more consistently,” says Wendy.

“It has helped us to say, ‘Yes, they are dying’, and so the nursing care plan stops and the end-of-life care plan comes into play.”

Wendy says staff have been reassured to learn that if a resident’s health improves, the nursing care plan can be resumed.

“It doesn’t happen a lot, but it does happen. We have had a man who started on end-of-life care pathway and then came off. It is okay to start the process, and then take someone off it if they don’t die.”

Sharon says staff have responded well to her mantra: “Treat the treatable, reverse the reversible, unless the burden of treatment outweighs the benefit”.

“They have grasped the concept that a palliative approach to care is about providing support when the goals of care have shifted from curative to comfort,” Sharon says.

Generally, registered nurses work with local general practitioners and a nurse practitioner to provide palliative care. Sharon says when a person has complex needs the link nurse facilitates timely and appropriate referrals to specialist palliative care.

“The link nurses have also really taken on doing palliative care case conferencing, which has improved communication around the dying process for both families and residents,” she says.

“The majority of Rural North West Health residents now have advance care plans and are seeing this as an ongoing review process rather than once-off documentation.

“It is very exciting to see them embrace this as not just a task to be done, but to see the difference it can make for their residents and the families.”