What do families experience as older people approach the end of life?
Family is traditionally regarded as a group of individuals connected by kinship through blood relations or marriage. Evolving social dynamics have expanded this definition to include those closest to the older person socially, emotionally, and/or legally, some of whom may not share a direct familial tie. [1]
A family member can be an important communication link between the older person and the care team, for instance in helping to bridge information gaps for transitions of care and to take part in decision making. [2] However, being present at the end of a loved one’s life can be a difficult experience.
Family members often found it challenging to manage caring or 'being there' for the older person at the end of life as they had to attend to additional personal and immediate family priorities or responsibilities. [3] They may face personal challenges with how they view or experience care at the end of life that is given to their loved one. [2-4] Families appreciate the care that is also extended to them during this period and note the impact that it has had. [5]
Want to learn more?
palliAGED has compiled relevant resources for families and older people that can help people navigate the diverse family experiences during this time.
CarerHelp offers a suite of resources for people who are caring for someone approaching the end of life. Carer Gateway offer many different services and supports for carers more broadly.
What can we do?
Organising family meetings / case conferences
Care teams:
- Support effective communication between the whole care team (e.g., the GP, family, and care team members).
- Organise a family meeting to discuss what care will look like for the older person and to gain their perspectives on potential issues or concerns that they may have (consider using a tool like the palliAGED forms to facilitate and document the case conference or family meeting).
Organisations:
- Ensure there are clear processes in place to facilitate engagement and discussions with the older person and their families e.g., planning and inviting family meetings and case conferences. A suite of forms are available to support case conferences in home care and residential aged care settings via palliAGED Forms.
The evidence:
- Communication with families during end-of-life care was a critical part of the successful process from the perspectives of families. [6]
- Families expect the care team to know what they need support / guidance on and for information to be communicated in a timely and kind way. [6]
- The relationships and contact between carers and health professionals can also be a source of support for carers. [3]
Communicating with families
Aged care workers:
- Involve the appropriate family member(s) by encouraging open communication that gives space for them to share their experiences of the care being provided, any concerns they may have, and how they are feeling.
Organisations:
- Implement processes to ensure that care teams understand who an older person’s support people are. They might feel more at ease involving certain people in sensitive conversations more so than biological family members.
- Train staff members to enable their ability to have conversations to discuss and address family needs as part of care at the end of life. Provide guidance to workers on how to recognise and navigate these situations.
The evidence:
- Family members worried about the quality of care and how well the older person’s symptoms were managed. [6] They also worried about whether needs would be ignored when they were not present with their loved one. [6]
- When it comes to the decision-making process, family members felt neglected when care team members did not adequately share information. [6]
- Families might have trouble understanding what the end of life involves and navigating treatment decisions. [6]
Supporting families
Aged care workers and organisations:
- Refer older people and families to resources and supports offered by health services or community organisations, especially if they are experiencing distress and conflict, or are in need of grief and bereavement supports. Carer Gateway and CarerHelp, for example, may be helpful.
The evidence:
- In trying to balance caregiving commitments / supportive roles and personal responsibilities, this can lead to family members feeling stressed, guilty, and/or burdened. [3]