Recognise End of Life - Home Care
X

Recognise End of Life

A growing proportion of older Australians are living longer and dying with life-limiting illnesses [1-3]. The majority of older Australians express a preference to be cared for and to die at home [4, 5]. This means it is important that care workers and clinicians can quickly recognise the signs that an older person may be approaching the end of their life, in order to provide for their end-of-life care needs.

  • What is end of life?

  • What is end-of-life care?

  • Home care providers role

The period of end of life is when a person is living with, and impaired by, a fatal condition. The trajectory of this condition may be ambiguous or unknown [6, p27].

To inform care, the Australian Commission on Safety and Quality in Health Care (ACSQHC) state “people are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:

  • advanced, progressive, incurable conditions
  • general frailty and co-existing conditions that mean they are expected to die within 12 months
  • existing conditions, if they are at risk of dying from a sudden acute crisis in their condition
  • life threatening acute conditions caused by sudden catastrophic events.” [6, p27]

However, the length of the period of end of life can still vary significantly. It may be years where an older person has a chronic or malignant disease, or very brief, where an older person suffers acute and unexpected illnesses or events (e.g. sepsis, stroke or trauma. [6, 27]

End-of-life care 'includes physical, spiritual, and psychosocial assessment, and care and treatment delivered by healthcare workers. It also includes support of families and carers and care of the person’s body after their death.' [6, p27]

Timely recognition of changing needs supports care at home. [7] Subtle changes that are noticed should be escalated to the RN, care partner or GP. Care workers and clinicians involved in care at home may often be:

  • In a good position to identify when a person needs end of life care.
  • Able to share information with others to support the older person’s needs and preferences.

In cases where extra support is needed, referral to a specialist palliative care service may be required. This is explained in more detail in the ELDAC Home Care Toolkit section on Work Together.

The use of routine and simple trigger tools and questions can provide prompts for care workers and clinicians to undertake a holistic assessment of an older person to see if they would benefit from end-of-life care. [6]

What tools can I use to identify that an older person may be approaching the end of life?

  • The Surprise Question

  • The SPICTTM

  • The AKPS

The surprise question is suggested as a simple trigger tool to use as the first step. Ask yourself of an older person:

  • “Would you be surprised if the older person died in the next 12 months?”
  • “Would you be surprised if the older person died in the next days or weeks?

If the answer is 'no, I would not be surprised' they may be approaching the end of life.

The Supportive and Palliative Care Indicators Tool (SPICTTM) (184kb pdf) is a screening tool often used in addition to the Surprise Question.

  • The SPICTTM helps identify changes early in a person’s health and wellbeing. It can be used to continually monitor a person’s condition. These include any general indicators of poor or worsening health. Also, clinical signs of one or more life-limiting health conditions, and increasing burden of illness. To identify that someone may need end-of-life care, at least one of each of the general and clinical indicators would have a positive response.
  • Visit the SPICTTM website for user guidelines and further information about this free tool, including:
    • The SPICTTM has been translated into numerous different languages.
    • An e-SPICTTM version is available to view on devices or download.
  • The SPICT-4ALLTM (186kb pdf) is another version, using easy to understand language. It is designed to be used by everyone, including people with long-term illnesses, and their family and carers. The SPICT-4ALLTM makes it easier to identify and discuss the signs that a person’s overall health may be declining. This ensures the care they need in a timely manner. More information is available about this tool, including the how to use guide on the SPICT-4ALLTM web page.
  • The Australia-modified Karnofsky Performance Status (AKPS) (37kb pdf) is a measure of an individual’s overall performance status or ability to perform their activities of daily living.
  • The AKPS measures performance across the dimensions of activity, work and self-care. An AKPS score of 100 signifies normal physical abilities with no evidence of disease. Decreasing numbers indicate a reduced ability to perform activities of daily living.
  • An older person is eligible to assess the End-of-Life Pathway funding if they meet these criteria:
    • A medical practitioner or nurse practitioner provides an estimated life expectancy of three months or less to live, and
    • The older person has score of 40 or less on the Australia-modified Karnofsky Performance Status (AKPS) (37kb pdf), which is a mobility/frailty indicator.

Remember, end-of-life care may also be required for an older person who has an acute deterioration. There is more information about this in the Respond to Deterioration section of this Toolkit.

  • The ELDAC Home Care App is designed to help care workers to provide palliative and end-of-life care to older people at home. The App has six sections:
    • Plans for end of life
    • What should I say?
    • As things change
    • When someone is dying
    • Supporting families and carers with their grief
    • Looking after yourself.
  • Watch the ELDAC Home Care Toolkit educational video on Recognise End of Life to help define and recognise the common signs of end of life and understand the use of end-of-life tools, such as SPICTTM and the Surprise Question.
  • Listen to the ELDAC Podcast Episode 1: Recognising the last days and last year of life.
  • Review the SPICTTM user guidelines to learn more about:
    • assessing people’s needs and planning care
    • talking about future care planning
    • starting conversations about changes in health and care planning.
  • Gain a better understanding of the clinical indicators used in the SPICTTM:

CarerHelp 

CarerHelp

This website offers a range of tools, videos and information to support carers.

Recognising changes 

CareSearch

This webpage offers simple information about the signs that an older person may be declining in health over time.

  1. Australian Government Treasury. Intergenerational Report 2023 at a Glance (312kb pdf). 2023. [cited 16 Feb 2026].
  2. Australian Institute of Health and Welfare (AIHW). Deaths in Australia, Leading Causes of Death. Updated 9 April 2025. [cited 16 Feb 2026].
  3. Palliative Care Australia (PCA). 2024 Federal Budget Submission - investment proposals for better access to palliative care now and in the future. 2024 [cited 10 Feb 2026].
  4. Waller A, Sanson-Fisher R, Nair BR, Evans T. Preferences for End-of-Life Care and Decision Making Among Older and Seriously Ill Inpatients: A Cross-Sectional Study. Journal of Pain and Symptom Management,. 2020 Feb; 59(2):187-196. doi:10.1016/j.jpainsymman.2019.09.003. [cited 17 Feb 2026].
  5. Ding J, Johnson CE, Auret K, et al. Comparison of end‐of‐life care for people living in home settings versus residential aged care facilities: A nationwide study among Australian general practitioners. Health & Social Care in the Community,. 2022 Jan; 30(1):91-101. doi:10.1111/hsc.13375. [cited 16 Feb 2026].
  6. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential elements for safe and high-quality end-of-life care. (1MB pdf) Sydney: ACSQHC. 2023. [cited 16 Feb 2026].
  7. Thapaliya K, Cornell V, Lang C, et al. Aged and Health Care Service Utilization by Older Australians Receiving Home Care Packages. Journal of the American Medical Directors Association. Mar 2023;24(3):395-399.e2. doi:10.1016/j.jamda.2022.11.019. [cited 17 Feb 2026].