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How to die better: Award-winning researchers seek to revolutionise end-of-life care

When the time comes, will you be ready to leave? Will you be of sound enough mind to tell others how you’d like to go? 

The truth is, few of us are. Just 3 per cent of Australians over 65 have a statutory advance care directive in place. Mortality is, after all, a hard thing to confront – the impulse is to delay and deny, prevaricate and evade. But, for the sake of ourselves and those who care for us (in both senses of the word), it is critical to be prepared for the final act and exit. 

But this is a responsibility we shouldn’t bear alone.

New, groundbreaking research out of Australia has offered a proactive, evidence-based mechanism for aged care homes to enable staff to better facilitate quality of death and dying for their residents. Key to their model is specialist palliative care intervention, implemented through what they term ‘Needs Rounds’. 

Chaired by a specialist palliative care clinician, these Rounds comprise monthly triage meetings with care home staff, where over the course of an hour they discuss 10 residents at risk of dying without a plan in place and who are experiencing complex symptoms. 

Goals of care are then articulated, and plans are formulated. Nurses, nursing aides, activities coordinators and managers attend. 

The study found these Needs Rounds improved staff confidence and capability, making them more proactive about attending to and meeting the care needs of residents in their final months of life. 

Rates of care planning also increased, “with care home staff actively engaging families around discussing anticipatory care and anticipatory medicines”.

Published in the Journal of the American Geriatrics Society, involving researchers from the University of Canberra, the Australian National University, UTS Sydney, the Australian Catholic University and Calvary Public Hospital, the trial has since received increased funding from the ACT government, with plans to roll it out across the state. For their work, the team received the 2019 National Palliative Care Award for Innovation.

Despite the high rate of mortality in aged care homes, care of dying residents is largely “suboptimal” in these places, the researchers judged. Approaches are inconsistent, staff are underequipped, and steps towards sustainable change often falter. Over the last year, the real-life consequences of this deficiency have been writ large in the frequently devastating testimonies submitted to the Royal Commission into Aged Care Quality and Safety. 

Easy access to specialist palliative care services is also uncommon in care homes, despite the fact this improves quality of life and death of residents, and decreases deaths in hospitals.

“Care homes traditionally haven’t had as much access to specialist palliative care as people living in their own homes,” co-author and ANU Associate Professor Wai-Man (Raymond) Liu tells Aged Care Insite

“Compare the experiences of someone with advanced cancer who lives at home. They are likely to see an oncologist and/or specialist palliative care team and might be offered an in-patient hospice bed. 

“Someone dying in a care home isn’t likely to get this kind of support, and hence their symptoms (physical as well as psychological and spiritual) are less likely to be met.”

Liz Forbat, Juliane Samara, Jane Koerner, Nikki Johnston and Wai-Man Liu at the Palliative Care Awards. Not pictured: co-authors Michael Chapman and Lawrence Lam. Source: Palliative Care Australia

Advance care planning has been shown to improve when specialist palliative care services are involved. When this happens, the end-of-life preferences of individuals are more likely to be heard and met, distress is mitigated, communication with family is improved, and expensive last-hour medical interventions that the dying don’t want are avoided.

A background paper released in June by the Royal Commission into Aged Care Quality and Safety also found that advance care planning can reduce depressive symptoms among those diagnosed with dementia.

“When we get sick, sometimes our ability to tell others what is important to us diminishes,” says Liu. Advance care planning “empowers the patient while preserving their autonomy. It also helps patients to explore and define their values, preferences and goals of care. 

“Without having an advance care plan in place, care can’t be truly person-centred.”

Armed with this knowledge, and following a successful pilot study in 2014-15, the researchers designed the Palliative Care Needs Rounds intervention, trialling its effectiveness across 12 aged care homes in Canberra over 16 months beginning in early 2017. 

Seventeen-hundred non-respite residents were involved in the trial, with 537 dying over its course. Rather than a “two-arm” approach, the researchers adopted a “stepped wedge” methodology – meaning that every participating aged care home would at some point adopt the model.

“We wanted to have a design where everyone would have the potential to experience the Needs Rounds intervention,” Liu explains. “Our pilot work suggested that it was likely to have positive outcomes and it wouldn’t have been ethical to withhold the new approach.”

Despite the intricacy of the study, it took just one year for it to be designed, funded and approved. 

“Which was very rapid,” Liu reflects.  

Only two nursing homes demonstrated low compliance with the model, with one dropping out. Liu posits facility cultures and a lack of commitment to accommodate the regular monthly meetings may have contributed. Yet overall, the majority of participating staff were “enthusiastic and dedicated to improve care for their residents”. 

The research team is now working to revolutionise end-of-life care in care homes with their award-winning study. They are lobbying governments to adopt Needs Rounds as their core model, and have written to ministers to seek a meeting. The researchers have also submitted the study results as evidence to the royal commission.

With their new funds, they are hiring Specialist Palliative Care Nurses to support the delivery of the Needs Rounds model across all ACT residential aged care facilities. 

They believe their research can have an international impact too, and are developing a resource on how to implement the care model which can be accessed by care home staff across Australia and the world. 

Ultimately, they hope that aged care homes will work to create a system where quality of death and dying is given due recognition – so that mothers, fathers, brothers and sisters can transition out of this world while being afforded the dignity and agency they deserve.

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