“I’d come home and cry”: Putting palliative care in the spotlight to improve services

The importance of palliative care has been at the forefront of new health initiatives and research. [Source: Shutterstock]

Key points:

  • Palliative care is high-quality health care and support for people living with a life-limiting illness and their families. Its focus is on maintaining quality of life as an illness progresses and helping people live well for as long as they can.
  • A recent Federal Department of Health and Aged Care report found that 54% of palliative care professionals believe one of the greatest barriers to providing successful end-of-life care is the lack of an established advance care plan, with clear directives from patients 
  • The report also found that “fulfilling the patient’s wishes” was listed as one of the top five challenges for providing end-of-life care

New end-of-life care initiatives and research studies have been announced around the country, emphasising the focus needed on this often challenging time for both patients and their loved ones. 

Talking about and planning for death is uncomfortable, especially when it comes to a loved one, which is why Palliative Care Victoria launched their Dignified and Respectful Decisions initiative on Thursday as a means to educate Australians about the importance and power of discussing end-of-life plans and effectively collaborate with aged care teams to improve living and dying in residential aged care. 

The Dignified and Respectful Decisions project features comprehensive resources to educate and empower families. 

The resources guide patients and their families through the various medical and end-of-life decisions that may be required for their family members and encourage proactive planning to ease the decision-making process when the time comes including:

  • checklists to help guide end-of-life discussions
  • Well-being support information
  • Advice on how to work collaboratively with the patient’s doctors and palliative care providers
  • Information on how to prepare practically and emotionally to support their loved one
  • Contact to relevant support organisations

Nola Horne knows first hand the importance of these discussions as the primary carer for her husband living with dementia. 

After a long strong working life as a General Practitioner (GP) who often worked in aged care homes, Nola’s husband Henry was diagnosed with dementia and life changed slowly but irrevocably for both he and his wife. As Henry’s dementia progressed, Nola was able to care for him at home while making small but significant adjustments to their life to accommodate his increasing needs.  

“For a while, we were okay but then it seemed to affect so many aspects of our lives. My sleep was affected, and I was becoming exhausted, even our social life was affected as when we went out, Henry would go quiet, and I had to do the talking for two people. Between the caring and everything in between, it was getting too much for me,” Nola explained. 

“When Henry had to go into care, it was quite a burden for me as Henry used to work in aged care and he’d come home and say ‘That’s not how I’m going to finish’ so making that big decision was so hard.  

Two things were key in helping Nola through this difficult period as carer and decision-maker for Henry in the aged care home: grief counselling and knowledge of palliative care. 

As a retired nurse in aged care, Henry as a GP, and her son recently completed a year’s training in palliative care as part of his GP training, Nola was aware of what palliative care was and got in touch with a specialist palliative care service who helped Henry to be pain-free and comfortable right up until the end which gave her great solace. 

Nola’s story is one so many can relate to which helped spark the establishment of the End-of-Life Care Coordination in Primary Care Pilot Program in Newcastle to help people diagnosed with a life-limiting illness access the health care that they need while supporting their preference to be cared for and die at home.

Via a competitive tender exercise, BaptistCare, which operates in NSW, ACT and WA, has been commissioned to provide the pilot program across the Newcastle Local Government Area.

Sarah Newman, BaptistCare Home Care services General Manager said BaptistCare welcome the opportunity to provide one-on-one support to individuals and their families as they navigate the final stage of life.

“Everyone can have a different set of things that matter most to them. Our role in this program is to walk alongside people to facilitate access to the services they want and need and support what is important to them in journeying through this final stage of life.”

The program will be available to people 65 years and over (55 years and older for First Nations people), diagnosed with a non-malignant life-limiting illness, likely in their final twelve months of life and with limited community support. It is currently in the establishment phase with referral pathways being developed and will commence in April.

But researchers are keen to understand the positive aspects of end-of-life care and what worked well for both patients and carers to improve palliative care services in rural and remote areas where access is limited. 

A University of South Australia research student and Registered Nurse, Marylouise Freeman, along with Associate Professor Kate Gunn is leading a new study that will explore positive palliative care experiences from the perspective of primary caregivers so they can be replicated in other rural settings and reduce stigma around rural and remote healthcare.

 “Although rural health care is often painted in negative light, we’re hoping to do the opposite and tap into the strengths, so we can find ways to amplify what is working well,” Ms Freeman said.

The information gathered will inform and provide insights to service providers and policymakers about the lived experience of rural communities and help improve knowledge and access to rural palliative care.

The research team is currently looking for participants to take part in semi-structured interviews as part of the study. To be eligible you must be aged over 18, a primary carer of someone who has passed and received rural palliative care in the past two years, and able to share information about positive aspects of this. 

To find out more, email Ms Freeman at marylouise.freeman@mymail.unisa.edu.au

To access Dignified and Respectful Decisions information and resources, visit the Palliative Care Victoria website here.

Find out more about the End-of-Life Care Coordination Program in Newcastle here.

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