The experience for a carer doesn’t end when the person they are caring for dies. This is a time of major transition and adjustment for the bereaved person. In the period following death, the carers may need social and psychological support. Within the National Palliative Care Standards, Standard 6: Grief support proposes that families and carers should have access to bereavement support services and are provided with information about loss and grief.
Palliative care at this time can provide a support system to help the family cope. This can involve a team approach to provide supportive care and information, assessment of needs and referral to service providers as required. This may include bereavement counselling.
Bereavement is a personal experience. There is no standard response to the death of a close family member or friend. Grief is how bereavement affects us personally, with effects across several domains:
Culture plays a major role in the expression of grief. Most people experience fluctuating reactions for a period of time while others can develop an intense and prolonged grief experience. For most people, the feelings of loss and grief will become less intense over time with reassurance, acknowledgement of their losses and access to information. For some, there is the potential for negative effects on the physical and mental health of the bereaved that can last for some time.
You will be involved in the provision of bereavement support to grieving relatives and carers. Identifying risk factors is an integral part of this process. It is important to seek guidance, if necessary, from an experienced member of the healthcare team to ensure that optimal bereavement support is provided.[3, 5, 6]
Prolonged grief disorder
A proportion of people experience extreme and enduring grief which impacts negatively on their relationships, employment and life. Prolonged grief disorder is chronic, debilitating and has been linked to the development of chronic health conditions, suicidal ideation / suicide attempts, and adverse health behaviours.[7, 8]
Risk factors for prolonged grief disorder can include:
There is currently no gold standard for assessing bereavement risk and each person should be assessed individually to determine their risk of a complicated bereavement.
Symptoms of prolonged grief disorder include:[3, 6]
- Intense yearning for the deceased
- Feelings of purposelessness and futility
- Numbness, detachment or absence of emotional response to other aspects of life
- Distressing intrusive images or memories about the death, often related to the circumstances of death (indicative of a post-traumatic stress response)
- Excessive guilt and remorse, especially relating to events surrounding the death or the deceased
- Sense of life being empty or meaningless without the deceased
- Excessive irritability, bitterness or anger.
Prolonged grief disorder can require referral for individualised support which can include:
- Specialist bereavement counsellors
- Palliative care services (these usually offer bereavement follow up to their clients, often based on a risk assessment, and often accept referrals from other sources)
- Other mental health professionals with appropriate skills and expertise.
- Identify the factors that can impact on how Margaret copes with Bob’s death.
- What resources are available within your community to help bereaved caregivers? These can be formal and informal.
- Access the CareSearch website and review the Tools and Resources (Patients) tab on the Following up the Bereaved webpage. How could these tools be used within your discipline?
- As a healthcare professional, it is important to understand that the death of a person in your care can have an effect on you. What self-care strategies will you adopt when a person you’re caring for has died?
- Palliative Care Australia. National Palliative Care Standards. 2018; 5th Edition:[Available from: http://palliativecare.org.au/standards].
- World Health Organization. Definition of Palliative Care. 2017 [cited 2017 March 13]; Available from: http://www.who.int/cancer/palliative/definition/en/.
- Therapeutic Guidelines Ltd, Loss, grief and bereavement. 2019: Melbourne.
- Shear, M.K., S. Muldberg, and V. Periyakoil, Supporting patients who are bereaved. BMJ, 2017. 358: p. j2854.
- CareSearch. Bereavement and Grief. Clinical Evidence 2017 [cited 2017 March 13]; Available from: https://www.caresearch.com.au/caresearch/tabid/1345/Default.aspx.
- Therapeutic Guidelines Ltd, Support for families and carers in palliative care. 2019: Melbourne.
- Prigerson, H.G., et al., Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11. PLoS Medicine, 2009. 6(8): p. e1000121.
- World Health Organisation, International Classification of Diseases for Mortality and Morbidity Statistics, 11th Revision (ICD-11). 2018.
- CareSearch. Following up the Bereaved. Information for GPs 2017 17 November 2017]; Available from: https://www.caresearch.com.au/caresearch/tabid/3434/Default.aspx.
- Sealey, M., et al., A scoping review of bereavement risk assessment measures: Implications for palliative care. Palliative Medicine, 2015. 29(7): p. 577-589.