What does ‘talking about end of life’ involve?
The increasing possibility of death related to worsening health and/or advancing age may not always be clear to the person, their family or carers. [1] Aged care staff can help by gently introducing discussions about end-of-life care. [2,3]
Talking about dying includes conversations about health, care options, and planning for future medical and non-medical needs. [2-6] Documenting these discussions and the person’s preferences helps ensure wishes are respected when the time comes. [3,6] Advance care planning is one part of this.
Open and compassionate discussions help older people and their families feel informed, involved, and prepared. [2,3,7]
Respectful conversations about dying require active listening, sensitivity, and empathy. Non-verbal cues, such as silence and body language, are just as important as spoken words. [4,6,7]
Why talking about end of life is important in aged care
Clear and tailored communication about end of life can help prevent misunderstandings, identify unmet needs, and reduce unnecessary interventions. [3,5-8] Effective communication can also support informed decision-making and ensures that care is provided in a way that respects what matters most to the person. [9] It is therefore central to person-centred care. [6,9-11] Empathetic discussions about care goals and potential risks help families feel supported, building trust with staff and reducing anxiety. [1,2] They can improve satisfaction with care, and enhance care quality. [2,3,5]
Outcome 5.7 of the Aged Care Quality Standards highlights the role of aged care providers in facilitating end-of-life discussions. [9] This includes helping older people and their substitute decision-makers consider personal care choices, life-prolonging treatments, and responses to sudden health changes. [9] With regular review of advance care planning documents, providers help ensure that care remains aligned with a person’s current needs, goals, and preferences. [9]
What the evidence tells us
Older people often prefer medical, nursing or aged care staff to lead end-of-life discussions, especially in the early stages of illness. [7] However, starting these conversations can be challenging for nurses and aged care workers and requires preparation, rapport-building, and assessing a person’s readiness for the conversation. [4,6,7] Recognising verbal and non-verbal cues, such as concerns about health or future care, can signal the right time to begin discussions. [7] Listening carefully, observing changes, and using professional judgement can guide when and how to approach these conversations. Gentle prompts and discussions about familiar topics can create natural opportunities for open and thoughtful conversations. [4,6,7,12]
Making end-of-life discussions a regular part of care helps ensure they happen early and are guided by a person's needs, rather than being rushed in a crisis. [4,6] This means having these conversations during routine care planning meetings, structured assessments, and spontaneously, like when a person or their family shares concerns about future care. [3,4,6,11] A structured but flexible approach helps staff have ongoing conversations that adjust to a person’s changing needs and wishes. [3,4,6,11]
Explaining the illness and its progression clearly and early, while health is stable, helps with planning care that aligns with a person’s needs. [3,4,6,8] Waiting until a crisis can leave families unprepared and limit the person’s ability to express their wishes. [3,6,8] A proactive, structured approach allows for timely discussions so that care reflects what matters most to the person. [3,4,6]
Using simple, jargon-free language improves understanding, as does accommodating sensory impairments, such as hearing or vision difficulties. [4,6,7,12] Active listening, validating emotions, and asking open-ended questions create a supportive, inclusive environment. [4,6,7,12] Older people and their families value honesty and appreciate calm, reassuring discussions about fears, prognosis, and care options. [4,6,11,12]
Communication aids, interpreters, and visual or printed materials can enhance understanding, particularly for complex discussions like advance care planning. [6,7,12] Regular check-ins and techniques such as repeating back information help ensure clarity and shared understanding. [6,7,12] Regular family meetings and case conferences allow for discussions about preferences, updates, and expectations. [4,6]
Training in communication skills strengthens staff confidence and empathy when discussing end-of-life care. [4,5] Challenges, such as time constraints, family disagreements, and cultural or cognitive needs, require thoughtful strategies for meaningful, person-centred conversations. [4-6] Mentorship by experienced nurses can provide guidance and help model effective communication skills. [4]
Care of people with dementia
Dementia is a progressive and terminal condition but is not always recognised as such. [13,14] It is important to clearly explain dementia and its progression to the person, if possible, their family, and substitute decision-makers. [10,15] Staff with a strong understanding of dementia symptoms can communicate more effectively with people living with dementia, strengthening relationships and improving care. [16]
Early discussions about health changes and end-of-life care help clarify preferences, beliefs, and roles in decision-making. [10,15] Communicating with people with dementia requires patience, flexibility, and a focus on their needs, strengths and abilities.
While involving people with dementia in decision-making is important, it becomes harder as the disease progresses. [15] Strategies such as familiar routines, music, storytelling, and meaningful objects can help evoke responses and maintain connection. [17,18] Involving family members can bridge communication gaps, but it is important to ensure the person with dementia remains included in the conversation. [15]
Carers play a vital role in understanding a person’s preferences, especially as communication becomes more difficult. [10] Family and carers often experience grief, sadness, and anxiety when moving an older person with dementia to residential care. [10] Regular, clear communication between families, carers, and staff—along with updates, patience, and emotional support—helps make the transition smoother for everyone. [10]
Cultural considerations
Cultural beliefs shape how people communicate, share information, and make decisions. Some cultures prioritise collective decision-making, involving the whole family, while others value individual choice. [2] If care practices and cultural expectations do not align, it can cause distress. [6] In some cultures, discussing end-of-life care is considered inappropriate, and families may choose not to disclose an illness to the person. [2]
Recognising and respecting cultural norms build trust and supports good care. [2] Using interpreters or cultural liaisons can overcome language barriers, while cultural awareness or sensitivity training helps staff provide respectful and inclusive care to people from diverse backgrounds. [6]
Implications for families and carers
Older people value strong family and friendship relationships and often want to discuss end-of-life matters openly with their family or carers. Many seek guidance and support from aged care staff during these conversations. [7]
Families and carers often feel overwhelmed by the emotional and practical demands of caregiving and decision-making. [2,3] Clear, empathetic communication reduces stress, prevents misunderstandings, and builds trust in the care process. [2-4] Balancing information with emotional support helps families and carers feel more prepared. [2,4] Involving them in advance care planning can reduce uncertainty and ensure care aligns with the older person’s wishes. [2,3,6]
Family and carers play a key role in advocating for the older person, particularly when cognitive impairments are present. [3] However, family disagreements about care goals can complicate discussions, highlighting the need for aged care staff mediation and sensitive communication to reach a shared understanding. [4,6] Regular family meetings keep everyone informed and involved in decisions. [2-4,6]
Page updated 03 January 2025