What is terminal care?
Terminal care is the support provided during the final weeks or days of a person's life, focusing on comfort and dignity, and honouring death. It involves managing physical symptoms such as pain and breathlessness, as well as addressing emotional, social, and spiritual needs to offer comprehensive support. [1] Care is guided by the person’s preferences and values, ensuring that their wishes are respected during this time. [2]
A multidisciplinary approach is key to terminal care. Personal care workers provide day-to-day comfort, such as repositioning to prevent discomfort, while doctors and nurses manage symptoms with appropriate medications. [3,4] Teamwork ensures that care adapts as the person’s needs change, helping them feel supported at every stage. [5]
In residential aged care homes, terminal care is often provided for people with chronic illnesses, including dementia and heart failure, who may experience gradual declines. [6] These settings provide consistent care in familiar environments, reducing the stress of hospital transfers, which can be unsettling for both the person and their family. [7] Recognising the signs that someone is nearing end of life, such as changes in breathing or reduced appetite, allows staff to shift focus to comfort measures and symptom relief. [8,9]
Why terminal care matters in aged care
As Australia’s population grows older, more people are living with terminal conditions such as dementia, Parkinson’s disease, and heart failure. [5] These conditions can have unpredictable trajectories, which can make it difficult to identify when someone is nearing the end of their life. Early recognition of the dying phase allows care teams to manage symptoms better and adjust care plans to meet the person’s changing needs. [4,9] Residential aged care homes and home care services provide a supportive environment to deliver comfort-focused care, often allowing individuals to remain in familiar surroundings and avoid hospital transfers. [10]
Guidelines and standards provide important frameworks to support terminal care in aged care settings. The Palliative Care Australia National Standards, particularly Standard 4, highlight the importance of a person-centred approach, ensuring care addresses physical, emotional, and spiritual needs while reflecting individual preferences. [5] The Australian Commission on Safety and Quality in Health Care (ACSQHC) National Consensus Statement advises care providers to recognise health deterioration early, communicate effectively, and deliver culturally safe care. [11]
The Aged Care Quality Standards, especially Action 5.7.4, encourage aged care providers to deliver end-of-life care that is evidence-based and aligned with older people’s preferences and values. [9] In residential aged care, the Australian National Aged Care Classification (AN-ACC) Class 1 ensures funding for a person entering residential aged care for the purpose of time-limited end-of-life care. [12]
For those receiving home care, GPs can coordinate end-of-life care and provide timely access to essential medications and equipment. [13] As of 1 November 2025, the Support at Home Program includes an End-of-Life Pathway for people who are expected to live for three months or less. It provides access to more intensive in-home aged care services to help people stay at home for as long as possible. Individuals can be referred for a high-priority assessment to access this support, even if they are not already in the Support at Home Program. Up to $25,000 in funding is available which must be used within 12-16 weeks. The pathway will work alongside, not replace, support from specialist palliative care services. [14]
What the evidence tells us
Providing good end-of-life care in aged care involves planning, clear communication, access to injectable end of life medications and support tailored to each person and their family.
Recognising when death is near
Signs that someone is nearing death include worsening illness, weight loss, and more severe symptoms. [15] They may feel very weak, spend most or all their time in bed, and sleep much more. They often lose interest in food and drink, taking only small sips of fluids. In their final days, they might become unresponsive, unable to swallow, produce little or no urine, breathe differently, and their skin may turn pale, mottled, or cold. [15] These changes indicate the need for increased care and support.
Managing symptoms in the final days
Common symptoms in the final days of life include pain, breathing changes (such as breathlessness causing distress or noisy respiratory secretions), constipation, delirium, nausea, vomiting, agitation, and restlessness. Although vital signs are usually not monitored at this stage, checking for comfort and distress remains important. Care focuses on pain relief, breathing, urinary and bowel comfort, skin and mouth care, and meeting spiritual and cultural needs. [15]
Signs of discomfort, such as facial expressions, body movements, or changes in breathing, can guide care, as patients are often unresponsive or unconscious at this stage. Symptom management may include medications and non-drug approaches, adjusted as symptoms change. Symptoms such as terminal restlessness, respiratory secretions, delirium, or signs of suffering should be addressed quickly. Medications and simple environmental adjustments, such as dim lighting and quiet spaces, can ease distress. [15]
Ensuring comfort and dignity
Basic care, such as applying moisturiser to prevent dry skin, oral swabs to keep the mouth moist, and repositioning to prevent pressure sores, help maintain dignity and comfort in the final stages of life. [16] Families should be informed about what to expect during the dying process and how they can help, such as repositioning or providing comfort. Aged care staff should also communicate when it may be important for family members to visit, especially if they need to travel. Keeping essential medications like opioids, anticholinergics, and antiemetics on hand ensures symptoms can be managed promptly. [15] Syringe drivers are useful for delivering continuous medications under the skin to maintain comfort. [15]
Palliative care emergencies
Emergencies such as severe pain, bleeding, seizures, or breathing difficulties need anticipatory planning and rapid responses to ensure comfort and reduce distress. [17,15] These events can happen at home, in aged care, or in hospitals, and care should align with the person’s wishes and prognosis. Good preparation for terminal care includes having a clear care plan, the right medications and equipment on hand, and access to trained healthcare providers to manage emergencies. [18,19]
Hospitalisation at the end of life can be stressful and is often unnecessary. Virtual care services and paramedics trained in palliative care can often manage emergencies at home or in aged care facilities, helping to avoid hospital transfers when appropriate. [19,20] Checking for advance care plans before making treatment decisions helps ensure care respects the person’s wishes. If these plans are unavailable, consulting the patient’s GP or palliative care team can provide guidance. [15]
Key principles for managing emergencies include staying with the person to provide support, respecting their choices, setting clear care goals, managing symptoms effectively, and involving specialist palliative care services early. [15] Providing the right care in these situations can help maintain quality of life and support families. [18] It is important to note, hospital is the right destination if a reversible cause is present and aligns with the patient’s preferences.
After death care
After death, care should respect cultural, spiritual, and emotional needs, tailored to the setting of care. In residential aged care, staff should ask families about any specific rituals or practices, such as washing and dressing the body, immediate burial, or cultural ceremonies like smoking rituals. [15] Some families may appreciate assistance with these tasks, or they may prefer privacy, which staff should accommodate by providing appropriate spaces or resources. In home care, carers may need to guide families on managing the body, such as using cooling techniques or coordinating with funeral directors and spiritual leaders. [15] Providing practical advice, like positioning the body in a cool room, can support families in preserving the body while awaiting further arrangements. [15]
Emotional support is also important. Families may grieve openly, sit in silence, or wish to participate in post-death care rituals, and personal care workers should provide a calm and empathetic presence. [15] Acknowledging the family’s caregiving role and offering resources for grief and bereavement, including community support groups or professional counselling, can improve grief outcomes and help families navigate their loss. [21]
Cultural considerations
Culturally safe palliative care respects the beliefs and traditions of all individuals, whether in residential care or at home. For Aboriginal and Torres Strait Islander people, this may include involving Elders, respecting spiritual needs, and supporting traditional practices like connection to Country. [22] In home care, these elements can be tailored to the individual’s cultural and community context, making their care more personal and meaningful. [22]
For culturally and linguistically diverse residents, care should respect dietary needs, religious practices, and mourning customs. In home settings, this might include helping families with cultural rituals or providing interpreters to assist with communication. [23] Staff education on cultural awareness and using interpreters can improve communication and build trust with families. [23]
Implications for families and carers
Caring for someone at the end of life can be emotionally and physically demanding for families and carers. They often experience stress and anxiety while managing symptoms, providing comfort, and ensuring dignity during their loved one’s final days. Without adequate support, this can lead to caregiver burnout. [7,24]
Clear and compassionate communication between aged care healthcare providers and families is essential. It helps families understand what to expect during the dying process and ensures that care aligns with their loved one’s wishes. Advance care planning supports families in making informed decisions, reducing uncertainty and distress. [8,25] For example, discussing the signs of imminent death or explaining the purpose of palliative care interventions can provide much-needed clarity.
Formalised support, such as access to specialist palliative care teams, is important in reducing the emotional and physical burden on carers. Multidisciplinary teams can address medical, emotional, and social needs, providing guidance and resources to help carers manage the demands of end-of-life care effectively. [2,6]
If an individual wishes to die at home, the CareSearch Supporting a planned home death: The GP’s checklist provides practical guidance for this process.
Page updated 05 June 2025