Recognise End of Life - Residential Aged Care
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Recognise End of Life

An older person may enter into residential aged care for more support managing their increasing care needs over the long term. While living in residential aged care and as the older person continues to age, they probably will experience more health issues. Therefore, they are more likely to die while in residential aged care. In 2019, residential aged care facilities were the second most common place of death after hospital/medical services areas, accounting for 29.5% of all deaths. [1] So it is important for the aged care team to have the ability to quickly recognise the signs that an older person may be approaching the end of their life. This will enable them provide for the person’s end-of-life care needs in a timely manner.

  • What is end of life?

  • What is end-of-life care?

  • The role of RAC services

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 [2, 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.” [2, 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, such as sepsis, stroke or trauma. [2]

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.' [2, p27]

Residential aged care services provide the majority of end-of-life care for older people living in this setting. RAC services also support their families and carers. 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 RAC Toolkit section on Work Together.

Consent must be obtained before a person receives medical treatment or undergoes a medical examination.

A person may consent to or refuse medical treatment if they have decision-making capacity. 'All adults are presumed to have capacity to consent to or refuse treatment, unless it can be shown that they do not. A person will have capacity for a medical treatment decision if they can:

  • comprehend and retain the information needed to make the decision, including the consequences of the decision; and
  • use and weigh that information as part of their decision-making process.' [6]

The ELDAC End of Life Toolkit has a factsheet providing an overview on Capacity and Consent to Medical Treatment.

A substitute decision-maker is a person with legal authority to make a decision on behalf of an older person who does not have capacity to decide. If the older person or a Tribunal has not appointed a substitute decision-maker, the law in each State and Territory sets out who can decide. This is usually a person’s family members or close friends. So long as they have a close and continuing relationship with the person. [7]

The ELDAC End of Life Law Toolkit has a factsheet that provides information on Substitute Decision-Making.

Supported decision-making allows a person who needs support to make their own decision; such as an older person with cognitive impairment. Examples of support include:

  • providing information in a format they can understand
  • giving the person more time to process and discuss the information with others
  • talking through options with them, or
  • communicating decisions made by the person to health professionals. [6]

The use of routine and simple trigger tools and questions can provide prompts for health care workers to undertake a holistic assessment of an older person to see if they would benefit from end-of-life care. [2]

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 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, family and carers and the healthcare team. The SPICT-4ALLTM makes it easier to identify and discuss the signs that a person’s overall health may be declining. This ensures they receive the care they need in a timely manner. More information is available, including guidance on using this tool 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.

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.

Carer Support and Resources 

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.