Palliative Care Connect: Help at hand to share the burden

News.com.au

6 days ago

Palliative care can help improve the quality of life for South Australians with a life-limiting illness and earlier access to these support services may help them live better.
Patients, their carers and families as well as their health and medical professionals are advised they can seek help and support earlier than they may think, so they do not struggle unnecessarily or feel as alone.
Palliative care can involve a range of services provided at any stage of the illness to make everyday life a little easier, from assistance with future planning such as an advance care directive to home equipment, services and medications that can help reduce symptoms.
A common misconception is that palliative care is only available to people who are imminently dying, so many access the care they need late or not at all.
Associate Professor David Holden, Medical Head of Unit at the Northern Adelaide Palliative Service, says many patients and family members know they need support and do not always know where to go for it.
'For some of our patients, they may need help with symptoms such as pain, shortness of breath or nausea,' he says.
'It might be sorting out social or financial matters or receiving equipment to remain longer at home.
'It might be getting down to see the local footy team or go to their local church or community group and maintaining those links that matter to them.
'At its heart, palliative care is asking patients what is most important to them, identifying those connections – whether that be time with friends or family, their hobbies and activities that bring them joy – and doing our best to support them in maintaining those relationships.'
Palliative care is available to patients with any life-limiting illness and is not limited to cancer.
People can access palliative care regardless of where they live, including in residential care or at home as well as in hospitals and hospices.
Some patients access palliative care services in person while others, particularly in regional and remote areas, may access services via a mixture of in-person, telehealth and telephone support.
While palliative care supports management of physical symptoms, it also focuses on emotional, psychological and spiritual needs. It supports carers and families.
Associate Professor Holden highlights that general practitioners and other health professionals all provide general palliative care and to reach out when they are unsure or have symptoms.
'Specialist palliative care can provide support for more complex needs or when the treating teams need extra assistance,' he says.
'The early identification that there might be better ways of doing things or when you feel you might be able to live better with some support is the time to ask.'
To help people access support, the Palliative Care Connect service is being trialled in South Australia but it is being considered for national implementation.
In the past two years, the phone line and website have supported more than 1300 people with or caring for somebody with a life-limiting illness.
'Particularly when you have the diagnosis or you're feeling overwhelmed caring for someone being helped,' he says.
'Being helped by professionals to navigate the system and access needed services provides a sense of confidence and relief for our patients, which may improve the experience of death and dying for everyone involved.'
Palliative Care Connect also offers a standalone bereavement service, which can provide counselling, support and referrals so people do not feel they have to struggle alone.
Palliative Care Connect is provided for everyone in South Australia, without referral or cost.
Making the right connection
When Carole Jarrett, 80, contacted Palliative Care Connect, she suddenly did not feel quite so alone.
The 'incredibly supportive' team of palliative care navigators immediately answered her request for information for herself and her husband Bruce, 84, who passed away in September, 2024.
A friend had emailed her the link to the Palliative Care Connect website at the start of the year, but after her stepdaughter did the same in May, she decided to take a look. She submitted her concerns and queries via its online call-back request form and within 15 minutes, a palliative care navigator had called her.
'I knew nothing about palliative care or what stage you could seek out palliative care,' she says.
'I explained the situation that Bruce and I were finding ourselves in, and that I was most concerned about how I would access help with Bruce showering and so on. The following day, an aged-care coach interviewed us and granted us a level 3 Home Care package; then an OT (occupational therapist) came the following day with equipment for me to assist Bruce. All of a sudden, I didn't feel quite alone.'
Over the following months, her assigned navigator regularly checked in, explained and helped her through the aged-care system, answered questions, and generally provided a supportive ear.
They also spearheaded the process for Bruce to move to respite care, where he passed eight days after leaving hospital.
Carole says despite having family and friends, it still feels a lonely time and appreciates her palliative care navigator called her to check in.
She praises the speed with which they operate and encourages others to call the service, even if they think it is too early to do so.
'If I'd gone on to the link sooner than I did, I might have been able to at least talk to somebody about what to expect, because you don't really know what to expect when you're edging towards this time in your life,' she says.
'The sadness and all of that sort of thing is still there but you feel like you are being supported externally by somebody that you know you can just say anything to, and get that bit of extra knowledge, I think it makes the journey a lot easier.'
Navigating a caring pathway
As a Palliative Care Connect Navigator, Myles Morrison often demystifies that palliative care is not the same as end of life.
'It's a common misunderstanding we often need to gently unpack,' he says.
'We clarify that palliative care is actually about helping individuals of all ages with a life-limiting illness live as fully and comfortably as possible, not just about the very end of someone's life.'
Morrison is one of two social workers and two nurses at Palliative Care Connect, taking calls and responding to website queries from people who are dealing with the physical and emotional effects of a life-limiting illness, or emotions following a diagnosis or a death.
They focus on navigating people to those services that can meet their needs by helping them find connection, gain knowledge and access the service providers most relevant in what can be a challenging and complex time.
As well as patients, carers and families, the service assists GPs, nurses, aged care and hospital staff and even community groups wanting to access palliative care and understand end-of-life or death and dying in general. A referral is not required.
'Honestly, (we assist) anyone, which I think is a real strength of the service,' Morrison says.
'We've spent a lot of time working directly within aged-care homes too, supporting residents, their families and delivering education or help for staff.'
They regularly answer queries around hospice options, financial support, My Aged Care and advance care directives but also provide a space for someone to debrief and explore what is available. 'I've also observed that guilt really tries to get a foothold in this space, often whispering to carers that they're not doing enough, when in reality, they are doing the very best they can,' Morrison says.
'A big part of what we do is helping people see they're not alone in these struggles and that helps to foster a real sense of connection to a wider community. 'Because everyone is unique, our approach is always to really listen to people's stories.
'We're also here to connect people to the right resources for their specific needs, whether they're at the beginning of their diagnosis or at the end of their life, or if they're family and carers needing that extra bit of guidance.
'We make sure to reassure them that there's truly no right way to approach death, dying, grief, or bereavement, and that alone often brings relief.'