New palliAGED topics support human relationship in palliative care
A blog post written by Dr. Katrina Erny-Albrecht
Almost two decades ago Hawthorne and Yurkovich were moved by their observations to publish an article on Human relationship: the forgotten dynamic in palliative care.[1] This week, the palliAGED team launches the second edition of the palliAGED Practice Tip Sheets for careworkers and nurses new to palliative care including five new topics. These topics have been called for by the aged care sector and reflect the very profound human experience of dying.
Formally reviewing and updating our palliAGED Practice Tip Sheets aligns with our quality processes as guided by the CareSearch model. As well as reviewing current evidence, actively listening to what the sector says is part of this process and ensures the support is both relevant and practical. The five new topics underpin compassionate support for older people adjusting to end of life as a valued individual with both dignity and choice.
- Advanced dementia behavioural changes
- Complementary therapy
- Psychosocial assessment and care
- Quality of life with deterioration and change
- Supporting families
In Australia dementia is the leading cause of death among women, and for all people over the age of 85 years.[2] Behavioural and psychological changes associated with advanced dementia are challenging. At times they can be confronting as the person you have come to know becomes at times unrecognisable and displays behaviour that might have dismayed their former self. Experience and evidence tell us that a focus on the underlying factors is a more effective way to respond to these behavioural changes. The potential causes are many and varied, helping carers to recognise this and the signs as well as ways to respond is what the palliAGED Practice Tip Sheets now do.
Use of complementary therapy is very common among people living in Australia. An umbrella term for a range of therapies and practices varying widely from nutritional supplements, massage and music therapy to reflexology and acupuncture. While they often lack an evidence base, what they have in common is the potential to help the person faced with a life-limiting illness to ‘escape’ or ‘live in the moment’. To support the role of care providers in ensuring that this is safely approached we provide tips on having this conversation.
That approaching the end of life affects our emotions, thoughts, attitudes, motivation, and needs along with those of our families comes as no surprise. It also affects our social circumstances such as relationships and living arrangements. The myriad of psychosocial changes and feelings faced often require major adjustment and can be overwhelming. Knowing how this might be expressed by an older person and their family members and how to respond compassionately makes a difference. Psychosocial assessment and reassessment help you to support people as a disease progresses and their needs and circumstances change.
Changing health status as a person’s condition deteriorates, can also impact quality of life. But not always. When it does the signs may be subtle or slow to develop. Being able to recognise these signs and suggest ways to support the person with activities that are meaningful to them can make a difference.
Supporting families is also part of palliative care. It is a natural extension of caring for older people as families are part of who they are and their meaning in life. The new Tip Sheet points out that caring for families is not an added task requiring even more time from a busy care provider. In many cases simply recognising the needs of an older person and their family and changing the way interactions are handled is enough.
Recent review of patient perspectives on models of palliative care found that ‘best practice is defined more by the qualities and values embedded in the care provided, not a particular program structure or setting’. [3] A sentiment they found reflected in attributes identified by patients and families as important in end of life within a hospital setting including care that is respectful and compassionate and that maintains a person’s sense of self. The importance of this is clearly recognised by the Australian aged care sector community whose influence has led to these new palliAGED Practice Tip Sheet topics.
Care informed by evidence of best practice forms part of the Aged Care Quality Standards. So too does support for a person’s relationships, dignity, and choice. The palliAGED Practice Tip Sheets combine the dynamics of research that help us to understand and measure what is happening with the many ways that this might be delivered to personalise care and nurture relationships at the end of life. Something Hawthorne and Yurkovich thought lacking and even impossible. [1]
We are pleased to share this updated and extended palliAGED resource developed with input from our expert review group members who have again helped us to clarify and summarise the information needed to make a difference. To further extend these resources, we have also launched online versions that can be easily viewed on mobile devices and include active links to connect you with additional information.
The new palliAGED Practice Tip Sheets are available for careworkers and nurses now.
When you have a moment to tell us what you think including ideas for further support, we will be listening.
Dr. Katrina Erny-Albrecht
Senior Research Fellow,
CareSearch & palliAGED
- Hawthorne DL, Yurkovich NJ. Human relationship: the forgotten dynamic in palliative care. Palliat Support Care. 2003 Sep;1(3):261-5. doi: 10.1017/s147895150303027x. PMID: 16594426.
- Australian Institute of Health and Welfare. Deaths in Australia [Internet]. Canberra: Australian Institute of Health and Welfare, 2021 [cited 2022 Apr. 21]. Available from: https://www.aihw.gov.au/reports/life-expectancy-deaths/deaths-in-australia/contents/about
- Rumbold B, Aoun SM. Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered? Healthcare (Basel). 2021 Sep 28;9(10):1286. doi: 10.3390/healthcare9101286. PMID: 34682966; PMCID: PMC8536088.