Bereavement
Grief is a natural response to any loss, such as death, a diagnosis, a change in health.
Bereavement is the experience of grief after the death of a significant person.
Most older Australians say they want to be cared for at home at the end of life. [1, 2] Attending to their grief and bereavement needs is a key feature of providing high-quality end-of-life care at home. [3] Support should also be offered to their families, carers, friends, and workers.
Older people, their family and carers will experience grief in varied ways.
- Grief is often heightened during times of change and transition, such as when an older person’s health needs are changing and at the end of life. [4]
- Some may also be at risk of negative outcomes related to grief or bereavement, including mental health issues [5, 6], such as Prolonged Grief Disorder. [7, 8]
Family or carers are vital to the care of an older person at home. [9, 10] However:
- Providing care at home over lengthy periods can bring many losses and may place carers at risk of poor psychological, physical and social wellbeing. [11, 12]
- Carers may be isolated in bereavement, which can increase their distress and loneliness.
Information about the dying process, loss and bereavement should be offered to family and carers. [13]
Care workers and clinicians involved in providing home care are well-placed to identify grief and bereavement needs and support older people, family and carers. Care workers and clinicians need to be aware of:
- core concepts (grief, anticipatory or pre-death grief, and bereavement), and
- factors that may increase the risk of negative outcomes related to grief and bereavement for older people, their family and carers.
These ELDAC resources provide this key information:
Care workers and clinicians can provide effective grief and bereavement support for older people and their family and carers at home.
Bereavement Practice Tips for Care Workers and Clinicians
ELDAC has Grief and Bereavement: Practice Tips for care workers (375kb pdf) and clinicians (441kb pdf) that provide key information on how to:
- offer support before and after a death, and for other losses
- share information about dying, grief and bereavement
- help people to connect with their own social support
- identify and respond to people with extra or complex needs.
In addition, all workers in home care should also think about these specific issues and tips when providing grief and bereavement support:
-
Day-to-day care
-
Share information
-
When the older person dies
-
Identify support needs
-
Extra support
What can I do in my day-to-day care now, to try and ensure people cope as well as possible with grief and bereavement later?
Recognise that positive experiences of care at the end of life may reduce the risk of poor outcomes in bereavement. [8] The care you provide can have an impact upon family and carers long after an older person has died. High-quality care at the end of life includes:
- talking with family and carers about changes in an older person’s condition
- exploring and addressing any spiritual, cultural and religious needs
- inviting family and carers to be involved in care at the end of life.
Why is it important to share information about dying, grieving and bereavement?
Sharing basic information about dying and grieving can help people to understand their responses to grief. It may also assist older people, family and carers to prepare for a death at home. [14, 15] Over time, consider ways to share resources when talking with older people, their family and carers about end of life or grief.
Keep in mind the need to share culturally appropriate information about grief and bereavement. There are also translated resources that are freely available. For instance, Coping with Grief by Griefline is available in English, Arabic, Greek, Spanish, Vietnamese and Chinese.
How should I respond when an older person in my care dies?
It is important to offer proactive support and assistance around the time of a death at home. Support following a death at home can be especially important, as families and carers may not receive other follow up that often happens when a death occurs in a hospital or specialist palliative care unit.
When you have contact with family and carers soon after a death at home, ensure that you:
- Acknowledge the death with thoughtful words or actions. This might be by writing a simple condolence or sympathy card when you have worked with an older person, their family and carers over time.
- Offer practical information about what to do in the weeks and months following a death. For instance, Services Australia provide information about what to do when someone dies, including a list of who to tell when someone dies.
- Where it is within your scope of practice, check in about the coping and support needs of family or carers after a death.
How might I identify people at risk of poor grief and bereavement outcomes?
All care workers and clinicians should be aware of some of the factors that may place older people, family or carers at increased risk of difficulties in grief and bereavement. This includes mental health concerns, such as Prolonged Grief Disorder.
ELDAC Grief and Bereavement: Core Concepts for Care Workers (450kb pdf) and Clinicians (721kb pdf) includes a simple summary of some of risk factors to keep in mind, such as:
- low social support
- high levels of pre-loss grief
- existing mental health concerns
- carer burden
- feeling unprepared for a death
- bereavement overload (many losses close together).
Clinicians working in home care should also use the conversational prompts listed in ELDAC’s Grief and Bereavement: Core Concepts for Clinicians (721kb pdf) to support assessment of grief and bereavement-related risk and protective factors for older people and their family and carers. Consideration of these factors should begin before a death, and factors should be revisited and reviewed over time.
Caring for someone at home through the end of life can be isolating. Some carers may have limited support or have become distanced from other family and friends. This may increase the impacts of grief and bereavement. As you interact with carers while looking after an older person at home:
- Recognise and validate their grief.
- Prompt carers to attend to their own wellbeing.
- Be aware of local or community support services that may be helpful. Share information about these supports as needed.
Adjusting to life after a caring role may also be challenging. Some carers may experience the end of caring as another major loss in their role and identity as a carer. Encourage carers to engage with support, such as trusted friends or their GP, while caring and after a death.
- Consider sharing resources, such as After Caring (388kb pdf) by CarerHelp, which provides information on coping with the end of a caring role, managing grief and the future.
What should I do when someone needs extra support in their grief or bereavement?
Pay attention if someone is experiencing risk factors, such as:
- low mood
- loss of purpose
- intense and painful longing for someone who has died
- difficulty engaging in day-to-day tasks
- withdrawal from others.
You may notice some of these factors over time, as you work with an older person, and their family and carers in the home. This means you may be able to proactively support people in need of extra care to connect with services providing anticipatory grief and bereavement support.
It is important to offer extra support when someone has several risk factors that seem to impact their ongoing coping in negative ways. Suggest counselling or other support services.
You might also discuss any concerns with a manager or supervisor, or offer information about services yourself, depending on your role. For instance, When grief doesn’t go away (337kb pdf) by CarerHelp is a brief resource that can be shared with bereaved carers that describes some of the signs that someone may need professional support.
ELDAC’s Grief and Bereavement: Practice Tips for Care Workers (375kb pdf) and Clinicians (441kb pdf) provide simple guidance about identifying complex needs, and assisting people to access additional grief and bereavement support where needed.
- The ELDAC Home Care App is designed to help care workers to provide palliative and end of life care to older people at home. The App has six sections:
- Plans for end of life
- What should I say?
- As things change
- When someone is dying
- Supporting families and carers with their grief
- Looking after yourself.
- Listen to the ELDAC Podcast Episode 6: Care in the bereavement phase.
- Use the ELDAC Bereavement Home Care Case Study on Amir and Layla for individual reflection and learning.
- Watch the ELDAC educational video on After Death Care and Bereavement for guidance related specifically to home care in providing support at time of a death and afterwards.
- Download the ELDAC Bereavement resources for personal learning or to use within in-services or education in your organisation:
- Home care can be isolating work, and workers sometimes feel unsupported and under-prepared for the emotional labour associated with caring for dying and grieving people. [16, 17] Proactively attend to your own wellbeing and self-awareness, especially around the time of or after a death, and when an older person has been known to you for a long time. Draw upon a range of strategies to reflect on your own grief and loss, including:
- Individual strategies to help you manage your emotional, social and physical wellbeing - for examples and resources, see the ELDAC Self-Care Room, or Palliative Care Australia’s Self-Care Matters.
- Collective strategies to help you reflect on losses within your work, such as opportunities to informally debrief with other workers about your work or after a death.
- Professional strategies, such as Employee Assistance Programs and other supports that may be provided by your organisation.
Pathway 5: After Caring
CarerHelp
This pathway provides information and resources about managing grief and loss, and how to move forward after caring.
Griefline
The website provides a range of grief and loss resources and information about connecting with online forums and counselling. The Griefline Helpline (Ph: 1300 845 745) is also available 8am-8pm, 7 days a week.
What to do when someone dies
Australian Government Services Australia
This webpage provides information about what to do after a death.
- A list of who to contact following a death.
- A factsheet about needing help after someone close to you has died provides information about payments and other help that is available. The factsheet is also translated into 11 languages.
- The looking after yourself section provides contacts for counselling services and planning for the future.