Over the past three years, the evidence and practice guidance covered by palliAGED has grown to 38 topics, each highly relevant to the care of older Australians who are dying or approaching the end of their life. The topics, based on The Palliative Approach in Residential Aged Care (APRAC) and Palliative Approach for Aged Care in the Community (COMPAC) Guidelines, were chosen with the support of two project advisory groups who contributed their expert understanding and experience of aged care and palliative care. The result is online evidence-based guidance developed with the sector for the sector.
In the past few months, we have been busy writing the final topic in this project: Psychosocial Care. Fittingly, this sits at the core of palliative care as evidenced by the quote from Dame Cicely Saunders.
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
Dame Cicely, founder of the modern hospice movement, understood that caring for a dying person is more than managing symptoms and advocated holistic support that recognised practical, emotional, social, and spiritual needs of the person and their family. Asking us to see the whole person beyond the life-limiting illness and to understand their story and sense of self, connections to family, social networks, concerns, and needs as they approach death. This also sums up the concept of psychosocial care as the term denotes both the psychological and social aspects of a person’s life, their emotions, thoughts, attitudes, motivation and behaviour, and the way in which a person relates to and interacts with their world.
We may have saved until last the thread that binds all 38 topics as Psychosocial Care weaves across every aspect of quality palliative care. At times, writing this topic has been like unravelling the strands of that thread in order to appreciate the individual contributions and influences that comprise psychosocial care before bringing them back together as a whole.
As we appraised and synthesised the significant body of evidence uncovered through this work, we have enjoyed many interesting discussions about the amplitude and nuances of the topic, and the multiple connections to other topics in deciding how best to present this topic in a concise yet complete manner. Exchanges with reviewers helped us to tease out certain aspects of psychosocial care and to appreciate the lived experiences of others. Importantly, this brought us to include distress alongside anxiety and depression. Distress includes helplessness, difficulty with change, fear, the sense of being a burden, feeling overwhelmed, existential distress, spiritual distress, financial distress, anxiety and depression. Empathetic clinicians and careworkers play an important role in normalising distress by recognising the potential for a person to be distressed and articulating that distress is a usual reaction for a person in their unusual situation. Our expert collaborators also reminded us that people with advanced illness often require repeated conversations to make sense of new information or changes, particularly if they are anxious. Repeating information and allowing them to ask questions and to have a space to absorb and understand their situation can help prevent misunderstandings, alleviate worries and reduce feelings of isolation.
In practice, awareness of and attendance to psychosocial support should be a part of all aspects of palliative care no matter your role. We hope that you find this new evidence-based resource on psychosocial care useful and as illuminating as we did in bringing it together. Take a moment to consider the impact you can have on those at the end of their life to help them ‘live until the end’ just by taking the time to understand their ‘world’.
Susan Gravier, Research Associate for CareSearch and palliAGED, College of Nursing and Health Sciences, Flinders University
Robyn Dutschke, Research Associate for CareSearch and palliAGED, College of Nursing and Health Sciences, Flinders University