Manage Dying

The last days of life are the hours, days or, occasionally, weeks when a person’s death is imminent. This is sometimes referred to as the period when a person is actively dying.

Good end-of-life care ensures that the older person’s physical, psychological, spiritual and social needs are met. To do this it is important to recognise signs of imminent death, as this:

can ensure that signs of distress and discomfort are addressed for the older person
can enable the person to spend time with the people of their choosing
supports the wellbeing of family and carers.

All care workers and clinicians need to be equipped to recognise that an older person is imminently dying and provide effective care and support.

How to manage dying in home care
To manage dying responsively and effectively at home, clinicians and care workers should consider these important questions:
Signs and symptoms of dying may differ between individuals. However, there are some common indicators that a person may be in the last days of life. These include:

signs and symptoms associated with the terminal phase

experiencing rapid day-to-day deterioration that is not reversible

requiring more frequent interventions

becoming semi-conscious with lapses into unconsciousness

increasing loss of ability to swallow

refusing or unable to take food, fluids or oral medications

irreversible weight loss

the occurrence of an acute event that requires revision of treatment goals

profound weakness

changes in breathing patterns.

Care workers should report any changes or concerns to their supervisors or the person’s care partner, and/or involved clinicians.

Clinicians should be responsive in addressing identified changes as needed.

palliAGED have Practice Tips on the signs of imminent death for Nurses and Careworkers.

Review the older person’s advance care plan or Advance Care Directive to be aware of their care preferences. This should also help to avoid unnecessary transfers to hospital, where this does not align with the older person’s preferences.

Include substitute decision-makers, family and carers in related conversations about care and updates about the condition of the older person. Offer support for family and carers as needed.

For guidance on identifying and managing common symptoms, refer to the Assess Palliative Care Needs and Provide Palliative Care sections of this Toolkit.

In the last days of life, pay particular attention to:

Wound and Pressure Care

Physiological changes and immobility affecting skin and soft tissue can occur during the older person’s dying stage. Risk factors, signs and symptoms associated with skin changes at the end of life include:

loss of appetite

weight loss

cachexia (signficant weight and muscle loss)

low haemoglobin, and

dehydration.

These changes can impact the skin and soft tissues leading to skin breakdown and pain. [1,2]

Use pressure-relieving equipment to prevent shearing. Equipment may include heel protectors and/or a pressure-relieving mattress.

palliAGED has Practice Tips on Skin and Wound Care for Nurses and Careworkers.

Oral Care

Oral care must be provided regularly and as tolerated to keep the mouth, teeth, gums and lips clean, moist and comfortable. Use a soft toothbrush or oral sponge with low foaming toothpaste or other products and a small amount of water.

A water-based lip balm to keep the lips moist. Assess the mouth for any changes. Ensure that dentures and partial plates are risk assessed for choking and are removed and cleaned thoroughly.

caring@home have a short video on how to provide mouth care. For a longer video watch the NHS Carrying Out Mouth Care EOL video.

Eye Care

Towards the end of life, dry eyes and excessive eye secretions are both common and can cause discomfort.

palliAGED has Practice Tips for Nurses and Careworkers on eye care.

caring@home provides a step-by-step guide (pdf) on how to care for the eyes, and a short video.

Bowel and Bladder Care

To manage urinary and/or bladder continence develop a continence management program which includes the use of pH neutral skin cleansers, skin emollients or barrier products and gentle hygiene techniques.

caring@home has a step-by-step guide (pdf) on how to change a pad.

Consider indwelling catheter for urinary retention if identified, or to prevent pain and excoriation from incontinence.

Marie Curie has information on continence management.

Constipation is a common symptom at the end of life often due to medications, reduced mobility and reduced appetite. palliAGED has Practice Tips on constipation for Nurses and Careworkers.

Managing Secretions

Secretions including noisy breathing, wet respirations, and terminal secretions may occur at the end of life.

Position the person to encourage postural drainage.

Keep the mouth clean as per the caring for the mouth step-by-step guide (pdf) from caring@home.

Provide explanation and support to family and friends.

Consider anticholinergic agents, but effectiveness varies. [3]

Delirium

The risk of delirium increases in the last weeks or days of life. [4] Recognise and respond to signs of delirium by using the 4AT screening tool.

The ACSQHC Delirium Clinical Care Standard (revised 2021) has information about responding to delirium and supporting the older person, family and carers who may be distressed due to the delirium.

Conversations about end of life, dying, and what matters most to older people are important. However, these talks can be difficult and confronting.

Talking about dying can:

Help the older person as it can inform and improve their care.

Help family and carers as it can assist them to understand what is happening and allow them to express concerns and be involved.

Help you in tailoring care to the person’s changing needs, and unique preferences, beliefs, and values.

Consider these key issues before talking with someone about dying and end of life:

Does the person want to talk about these issues now? Always check with an older person and their family and carers as not everyone talks about death and dying in the same way or is ready to talk at a particular time. Family and carers may also have a different need or desire for information than the older person receiving care.

Tailor your approach to someone’s needs. Pay attention to:

Non-verbal cues – Examples such as:

Is eye contact helpful for this person?

How to position your body to ensure the person feels safe and heard? This may mean moving to be at their height, in front of or next to the person.

Where is a safe and supportive place to have this conversation?

Verbal cues – For instance, what tone, volume and pace of your speech will suit this person?

Cultural and spiritual cues – May include: What do you know about their views and beliefs about dying and end of life? How might this shape the way you care and who may need to be involved in these conversations? For instance, does this person have time-sensitive preferences or spiritual practices that need to be attended to at specific times?

The REDMAP Framework (pdf) provides a 6-step guide to future care planning conversations. REDMAP stands for: Ready, Expect, Diagnosis, Matters, Actions and Plan.

How can you recognise and support difficult feelings that can arise during these conversations?

Listen actively and without judgement. Normalise the person’s feelings and thoughts.

Recognise that it is more difficult to absorb information during times of transition and stress, such as when someone is dying. Be aware that information may need to be repeated for the older people and their families and carers at this time. Reassure them that discussions about end of life can be revisited as needed. Provide written information so they can look back on it later in their own time.

There are legal regulations and laws related to death certification and coronial procedures.

Death is to be verified and depending on which state or territory you are in, this may be done by a nurse or doctor.

Certification of death must occur, usually by the General Practitioner. In some instances, deaths must be reported to the coroner.

After a death at home, it may also be helpful to remind family and carers that:

They can take time to be with the older person in ways that are meaningful for them. This will not look the same for everyone. Some people may want to sit or lay with the person who has died, or to help with washing the body. Others may not want to spend any time with the body.

There is not typically a need for families and carers to rush to contact someone to arrange certification immediately. CareSearch has Information about Verification and Certification of a Death on the After-Death Care webpage, along with information about other things that need to be done after an older person has died at home, including:

Care of the Body

Religious and Cultural Considerations

Tissue Donation.

palliAGED has downloadable Practice Tips on After-Death Choices for Nurses and Careworkers.
The specific role of clinicians

Holistic assessment and management of symptoms is critical for older people in the last days and weeks of life at home.

Symptom management often involves a combination of approaches including medications and non-medical approaches. Key principles to consider are the cause of symptoms, treatment benefits and burdens, the older person’s illness stage, overall care goals, and their preferences and values.

It is essential to provide opportunities for the older person and their family and carers to talk about what is happening. This includes talking about aspects of care, such as requesting or declining treatment. The ELDAC End of Life Law Toolkit has information on futile or non-beneficial treatment. These discussions can support understanding and offer space for people to express concerns. In some instances, consultation with a specialist palliative care service may be required.
In addition to the issues above, clinicians involved in home care need to be informed about:
CareSearch has a section on Planning for a Home Death, which includes an interactive GP checklist (pdf) for planning an expected home death. This covers topics such as:

clarifying expectations and support

planning for symptom management

assessing the home situation

providing information that families and carers need.

caring@home has a terminal care planning checklist for nurses in the community and a list of helplines for health professionals, which includes state based specific resources.

An End-of-Life Pathway is available (from 1 November 2025) under the Australian Government’s Support at Home program. This Pathway gives older people access to a higher level of in-home aged care services where they wish to remain at home until the end of their life. Funding up to $25,000 is available, for use over a 12-week period, and up to 16 weeks if needed.

An older person is eligible to assess the End-of-Life Pathway if they meet these criteria:

A medical practitioner or nurse practitioner provides an estimated life expectancy of three months or less to live, and

A score of 40 or less on the Australia-modified Karnofsky Performance Status (AKPS) (pdf), which is a mobility/frailty indicator.

Use the End-of-Life Pathway form (pdf) to document the necessary medical evidence for accessing the End-of-Life Pathway under the Support at Home program.

These resources provide further information about the End-of-Life Pathway:

A factsheet to give older people and their families and carers provides as overview about the pathway as part of the Support at Home program.

There is also a factsheet (pdf) specifically for doctors and nurse practitioners about the pathway.

Use this guide (pdf) to help in understanding the End-of-Life Pathway.

The Support at Home program manual provides information to assist registered providers to understand and comply with the program rules, procedures and obligations. The End-of-Life Pathway is covered in Section 14 of this manual.

Ensure medication (including anticipatory medication) to support management of pain and symptoms is prescribed, reviewed and available.

palliAGED has information on what team members can do to reduce care burden. These are treatments/care that no longer bring benefits, and which may be unpleasant for the person.

caring@home offers the palliMEDS app. It provides clinicians with prescription information for the most useful palliative and end-of-life care medicines in the management of terminal symptoms. The app also includes an opioid calculator tool. Caring@home also provide a National Core Community Palliative Care Medicines List Factsheet.

The ELDAC End of Life Law Toolkit has a factsheet on Legal Protection for Administering Pain and Symptom Relief.

Syringe drivers are commonly used for symptom management. They provide continuous medications subcutaneously (under the skin) when a person is no longer able to swallow.

Information and resources about syringe drivers can be found at CareSearch and palliAGED.

caring@home has factsheets on understanding infusion devices and how families and carers can help check them.

caring@home supports quality and timely palliative and end-of-life care at home. Health professionals can use the resources to teach families and carers to help manage practical care and symptoms at home. The Community Palliative Care Resources Box can be used in all Australian states and territories and includes:

symptom control tip sheets

recognising dying tip sheet

practical care step-by-step guides and videos

resources to support the safe management of subcutaneous medicines in the home.
How to build knowledge, confidence and skills in managing dying in home care
- Reflect on your own values, beliefs and preferences about death and dying – as this will enable you to be more present and comfortable when exploring these issues with individuals and their family and carers when someone is dying.
- Watch the ELDAC Home Care Toolkit Manage Dying educational video to help you recognise deteriorating health, understand the importance of talking about dying, identify changes when death is near, and provide support for an older person dying at home, and their family and carers.
- Watch the ELDAC Home Care Toolkit educational video on After Death Care and Bereavement. The video addresses grief and loss, creating space for family and carers to ‘be’ with a significant person around the time of death, and recognising negative outcomes in bereavement.
- Watch the palliAGED short videos on various aspects of managing dying and end-of-life care. There is a video on Recognising the signs of dying.
- Watch the Agency of Clinical Innovations clip on Medications at the end of life. This covers medications that may be needed in the last days of life and how these can be delivered, such as via syringe drivers.
- For clinicians, caring@home offers online education modules to guide education and support of family and carers who are providing care for a dying older person at home and teaching families and carers to help manage breakthrough symptoms using subcutaneous medicines. There is also an online education module for Aboriginal Health Workers.
- The caring@home End-of-Life Care Hub is a dedicated platform for GP education.
- Self-care is important when you are looking after people who are dying, many of whom you will have known for some time. The ELDAC Self-Care Room is designed for aged care workers.
Information for families and carers
caring@home

This tip sheet (pdf) provides information about how to recognise when a person is getting closer to dying or has died.

The Community Palliative Care Resources Box has resources on providing practical care, tip sheets about how to identify and manage end-of-life symptoms, understanding infusion devices and managing subcutaneous medicines.
The Dying Process

Palliative Care Australia

This resource offers simple information about changes the family and carers may notice and how to know that death has occurred.

References
1. Ellershaw J, Wilkinson S. Care for the dying: a pathway to excellence. 2nd ed. Oxford: Oxford University Press; 2011. [cited 17 Feb 2026].
2. National Institute for Health and Care Excellence (NICE). Pressure ulcers: prevention and management. Clinical guideline [CG179]. UK: NICE; 2014 (last reviewed 30 Nov 2018). 1-32. [cited 17 Feb 2026].
3. Australian Commission on Safety and Quality in Health Care (ACSQHC). Comprehensive Care Standard. End-of-life care: clinical basics. (pdf) ACSQHC. 2020. [cited 17 Feb 2026].
4. Agar MR. Delirium at the end of life. Age and Ageing, 2020 Apr;49(3):337–340. doi: 10.1093/ageing/afz171. [cited 17 Feb 2026].

Page updated 22 September 2026

Manage Dying

How to manage dying in home care

The specific role of clinicians

How to build knowledge, confidence and skills in managing dying in home care

Information for families and carers

References