Dr Katrina Erny-Albrecht
Senior Research Fellow, CareSearch and palliAGED, Flinders University.
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] An update of the palliAGED Practice Tip Sheets for careworkers and nurses new to palliative care was undertaken in early 2022 leading to the addition of five new topics. These topics had been called for by the aged care sector and reflect the very profound human experience of dying. Listening to the sector and updating resources aligns with the quality processes underpinning CareSearch and palliAGED content and products. [2]
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. [3] 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.
End of life affects our emotions, thoughts, attitudes, motivation, and needs along with those of our families. 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. Simply recognising the needs of an older person and their family and changing the way interactions are handled can be very impactful for them.
A 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’. [4] The importance of this is clearly recognised by the Australian aged care sector community as they identified the need for these new topics to enhance quality of care.
These Practice Tip Sheets for careworkers and nurses bring together research that help us to understand and measure what is happening with different ways in which we can personalise care and nurture relationships at the end of life. Something Hawthorne and Yurkovich thought lacking and even impossible. [1]
Reproduced with permission from CareSearch’s Palliative Perspectives.