Debunking the myths: What palliative care’s really about
Kate Swetenham, Director of Nursing, End of Life Care from the Department for Health and Wellbeing, has dedicated her career to dispelling the myths and misconceptions surrounding palliative care, a field of medicine she believes is often misunderstood.
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Swetenham said palliative care is far more comprehensive and begins much earlier than many people realise. “It is much bigger than just the care of physical symptoms or physical illness,” she said. “It’s a care of emotional well-being, psychological conditions that need to be addressed, spiritual aspects of a human being.” It’s about recognising the interconnectedness of a person’s physical, emotional, and spiritual needs, and providing support in all these areas for people with a life-limiting illness.
This holistic approach also extends beyond the individual to their families and broader social networks. “The tentacles go out quite a long way,” Swetenham said. Palliative care may involve helping someone living with a life limiting illness with housing insecurity, connecting them with community resources or simply providing a listening ear to a family member struggling to cope. Swetenham said palliative care is what she would call “supportive care”.
One of the common misconceptions Swetenham has encountered is the belief that palliative care is only for people in the final stages of life. In fact, she said, palliative care can be beneficial right from the time of diagnosis.
“You don’t have to be imminently dying,” she says. “You can be diagnosed with a condition that you might live with for a couple of years before death becomes a reality.” Palliative care can be integrated into a person’s care plan early on, providing relief from symptoms, emotional support and guidance in navigating a complex healthcare system.
“Palliative care is a philosophy of care,” Swetenham said. “It looks at the family being the unit of care.” This means recognising that illness affects not only the individual, but also their loved ones. Palliative care teams provide support and resources to families, helping them cope with the emotional and practical challenges of caring for someone with a life-limiting illness.
Swetenham said advance care planning can also be an important part of early palliative care. It documents a loved one’s wishes regarding medical treatment and end-of-life care. “It really does put families back in the driver’s seat,” she says. “It gives relatives great peace because they know they’re speaking on behalf of that individual.”
Swetenham’s own path to palliative care was shaped by personal experience. Her father’s diagnosis with a brain tumour when she was 10 years old gave her an early and intimate understanding of death and dying. “What that experience taught me was that I’m not afraid of dying, or of death, because I had seen it,” she said.
This early encounter with mortality, coupled with a natural affinity for caring for those with life-limiting illnesses, led Swetenham to a fulfilling career in palliative care. “I kept finding myself working with cohorts of patients that were actually living with a life-limiting illness,” she said. “The pull of palliative care was just too strong. I think it was recognition of something that I was comfortable around.”
As well as specialist nurses, like Swetenham, palliative care teams are made up of a diverse group of professionals, including specialist doctors, GPs, social workers, occupational therapists and sometimes even spiritual care providers. This multidisciplinary approach ensures that all aspects of a person’s needs are addressed. “It is to really provide that whole person care,” Swetenham said.
In South Australia, Palliative Care Connect serves as a crucial resource for anyone facing a life-limiting illness. “It’s like a healthcare navigation service,” Swetenham said. “It’s not just for patients, it’s for people that might be caring for them, it could also be a health practitioner who has got a patient in front of them, and they’re not really sure about what to offer or where the next step is.”
Palliative Care Connect offers a 24/7 website with easy-to-navigate information, resources and a call back form, as well as a phone line staffed by navigators who can provide personalised guidance and support. Visit palliativecareconnect.com.au or call 1-800-725-548 (PALLI8), Monday to Friday from 8:30am to 4pm.