Terminal / End-of-Life Care

Careful discussions may be needed to balance the wishes of the carer and family with the wishes of the person and the options for the person’s care.

• End-of-life Essentials and VitalTalk can help with practical tips on conducting these discussions.
• For additional guidance see Communication and Working with families.

Family members and carers may be helpful in picking up changes and non-verbal cues from the person.

Providing a homely or personalised physical environment may be of great comfort particularly if it allows family or friends to stay close to the person.

Caring for someone who is dying can be very difficult and carers may feel overwhelmed, isolated, or unsupported. They may also struggle with the increasing demands of caring in the last days of life. The community nurse can help through education and resources. They can also connect them to support services.

CarerHelp offers information and resources for carers across the care journey including the end of life.

The person’s desire and ability to eat and drink commonly diminishing over a period of weeks to months as their health deteriorates. As the person enters the last days of life, their mental state and ability to communicate thirst or hunger are also often impaired. At this stage, many patients do not feel thirst or hunger, but they may have a dry mouth, which can be uncomfortable.

The person’s family and carers may fear that the person will die of starvation or dehydration, and they may ask for medically assisted nutrition or hydration to be started or continued. If appropriate, explain that the person is not eating and drinking because they are dying, rather than dying because they are not eating and drinking.

The family may be able to assist with mouth care, especially if the person has a dry mouth.
‘[…] has lost their appetite and does not feel thirsty. They find swallowing difficult and if food or fluids are given, they can go down the wrong way. I can show you how to moisten their mouth care for their mouth and teeth so that they feel comfortable.’
Despite explanation and reassurance, some families may continue to be very distressed that the person is not receiving nutrition or fluids. Some cultural and religious groups may have strong beliefs on this issue, and advice and support from someone of the same culture or faith (e.g. a pastoral care worker, spiritual leader) may be useful.

Ceasing or withdrawing certain treatment can be challenging. Discussing the cessation of treatment should also include the impact that continuing treatment can have on a peaceful death.

‘[You/insert person’s name] have an illness that is no longer curable and it has made the body weak and tired. The body can no longer fight infection, and antibiotics are not likely to help anymore. [insert treatment] is not likely to prolong life or improve quality of life. Having [insert treatment] will mean that [insert effects or side effects] will impair the ability to […] and so it is recommended that this is not started or is ceased. Everything possible will be continued to be done to keep [you/insert person’s name] comfortable and to make sure that [you/insert person’s name] do not suffer.’

Resuscitation measures will not be effective or beneficial in the last days of life and may be distressing to a person and their family.

Decisions made as part of advance care planning including what to do in relation to resuscitation, may already be documented. If not, the doctors may explain to the person and family that resuscitation measures will not be effective or beneficial in the last days of life, and that the focus will be on keeping the patient comfortable.

‘When you stop breathing or your heart stops, we will not try to restart it, and will let nature take its course. Everything possible will be continued to be done to keep you comfortable and to make sure that you do not suffer.’

In many clinical settings it is important to plan ahead for access to medications for the symptoms common in the dying phase. Medications prescribed should be based on the assessment of the dying person’s condition and symptoms, and doses appropriate to the severity of those symptoms. Certain medicines can be prescribed in advance (anticipatory prescribing) to ensure good management when symptoms (e.g. delirium / agitation; respiratory secretions; pain) occur. If anticipatory medicines have not been arranged then a doctor or nurse practitioner can use the Pharmaceutical Benefits Scheme (PBS) prescriber bag list of medicines (96kb pdf) which can be useful in caring for the person dying at home.

The caring@home National Core Community Palliative Care Medicines List can guide nurse practitioners, GPs and other prescribers with their care of their home-based palliative patients in the terminal phase with urgent symptom relief.

Palliative care medications at the end of life are usually given via the subcutaneous route, which is generally the least invasive and most reliable route in the dying patient. More information can be found in Syringe drivers.

This information was drawn from the following resources:

• Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential elements for safe and high‑quality end-of-life care. Sydney: ACSQHC; 2023.
• Palliative Care Australia (PCA). National palliative care standards 5.1 Ed. Canberra: PCA; 2024.
• Palliative Care Australia (PCA). National palliative care standards for all health professionals and aged care services: For professionals not working in specialist palliative care. Canberra: PCA; 2022.
• The National Institute for Health and Care Excellence (NICE). Care of dying adults in the last days of life. London: NICE; 2019. (Clinical guideline CG31)
• Therapeutic Guidelines Limited. Terminal care: Care in the last days of life [Internet]. 2016. [updated 2016 Jul; cited 2022 Aug 8].
• Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015 Oct;29(9):774-96. doi: 10.1177/0269216315583032. Epub 2015 Apr 28.
• The terminal phase. In: Watson MS, Ward S, Vallath N, Wells J, Campbell R, editors. Oxford Handbook of Palliative Care. 3rd ed. Oxford: Oxford University Press; 2019.