Key messages

  • Most people who experience normal grief do not require specialist counselling, but would benefit from reassurance, acknowledgement of their losses, and access to information.
  • A proportion of people who grieve may experience intense distress over a prolonged period.
  • Tools which measure grief responses have reported good reliability and validity but have not been assessed for use in the Australian palliative care setting.
  • Cognitive behavioural therapy-based interventions are being studied in bereavement, and appear to show evidence of benefit. [1]
  • Provision of bereavement support by volunteers may be effective. [2]
  • Cost effectiveness of bereavement services has not been well studied. [3]
  • There is no evidence that grief counselling improves outcomes for people who experience normal grief. [4,5]
  • Risk factors for abnormal grief have been identified but there is no high level evidence relating to prevention.
  • Bereavement risk Index is widely used but formal validation studies are lacking.


Evidence summary

Definition and prevalence

Bereavement refers to the event of death of a person with whom there has been an enduring relationship. Grief is how bereavement affects us personally, with effects across several domains – emotional, cognitive, social, physical, financial and spiritual. Grief often causes disruption and disturbance of everyday life. However, grief can be expressed in very different ways: some people do not experience an intense reaction. Most people experience fluctuating reactions for a period of time while others can develop an intense and prolonged grief response. [6-8] Culture plays a major role in the expression of grief. [4,8,9]

Bereavement in childhood is common. About 5% of children will lose a parent or sibling, and up to 75% will experience the loss of a relative or friend before the age of 16. [10]

Common expressions of grief are varied and can include: [11]

Emotional

  • Depression
  • Anxiety
  • Guilt
  • Anger
  • Loneliness
  • Loss of pleasure
  • Shock and numbness.

Cognitive

  • Thinking all the time about the person who has died
  • A sense that the dead person is still about
  • Denial
  • Hopelessness.

Behavioural

  • Over or under activity
  • Social withdrawal
  • Agitation.

Physiological

  • Loss of appetite
  • Sleep disturbances
  • Tiredness
  • Susceptibility to illness.

For most people, grief is supported over time by a person’s family and friends. [5] Identifying the fact that there may also be positive outcomes of bereavement, including the potential for post-traumatic growth, is a recent development within the field; [12,13] 'resilience' is one of the key concepts that is being used to understand and acknowledge the way that people deal with their grief and bereavement. [14]

Abnormal grief (extreme or prolonged) is addressed in greater detail in the subsection Abnormal Grief.

Assessment

There is no clear consensus about how screening and assessment for the development of prolonged bereavement should be performed by palliative care services. [15]

Common patterns of response to spousal bereavement have been identified. Spousal loss occurs most frequently in later life, more often affects women, and for many bereaved spouses, it interacts with and compounds other health concerns. Maintaining independence is a common challenge in this situation for older people. [5]

Bereavement is a period of increased mortality for spouses. A meta-analysis has confirmed that men who are widowed are particularly at risk of mortality, and the first six months is the highest risk period. [16] The risk is associated with both expected and unexpected deaths, but social support may reduce the risk. Patient end-of-life interventions may positively influence bereavement outcomes for spouses. [17] The increased risk is unrelated to the age of the bereaved person. Cardiovascular risk for the spouse who survives is increased, particularly in the first few weeks. [18] There may also be a higher risk of stroke in bereaved people, however more research is needed [19] The vulnerability may be due to both the physiological impacts of grief, and also to altered health behaviours. There is evidence that in late-life spousal loss health behaviour changes can affect sleep, alcohol use, and nutritional intake causing involuntary weight loss. [15]

Specific grief considerations for different groups such as parents, [20-22] fathers, [23] children, [24] parents of children with chronic illness, [25] spouses, [26] those from different cultural backgrounds, [3] with intellectual disabilities, [25] in the setting of perinatal loss, [27] and in indigenous populations are areas with limited evidence to support clear recommendations for assessment.

Treatment

There is no evidence that sharing and disclosure of feelings will lead to ‘healthy’ or less intense grieving for those people who experience normal grief reactions. [11] There is also no evidence that grief counselling improves outcomes for people who experience normal grief. [4,28] Most people grieve within their family and friends network and often do not seek out professional support. [28] Therefore, interventions targeted at community awareness around grief and bereavement may be beneficial. [28]

Protective factors in the health outcomes of bereavement may include: [29,30]

  • Responsive health care for the dying patient and reduction of patient distress before death
  • Optimistic and resilient personality characteristics of bereaved individuals
  • Secure relationships with family and community
  • Supportive, positive communication

Bereavement in childhood is not uncommon, as many children will have personal experience with death of family members, or other people they know such as neighbours. [31] Most often this is associated with short term negative impact, but few long-term difficulties. There is some evidence that interventions targeting the parents to support their bereaved children may have improved outcomes and group therapy interventions have also showed some positive effects in children. [29] Children’s books talking about death and dying have also shown positive outcomes, although there is limited content covering a child’s own death. [32]

The death of a child can be particularly traumatic and there is increasing research into bereavement and grief of parents and surviving siblings. [13,33-35] There remains a lack of research into bereavement associated with losing a child from chronic illness. [25] For parents who are grieving the loss of a baby their ability to bond with the deceased child, and create memories of that child have been shown to promote a positive experience. [36,37]

The impact of caregiving on grief and bereavement is being studied. High levels of social and emotional support can modify bereavement distress, and there is some evidence that receiving support from palliative care services, and home deaths, may improve bereavement outcomes for caregivers. [1,30] The impact a patient’s death has on the health care professionals caring for them has also been studied. [38,39] Issues such as poor role definition, lack of resources and limited training can have a negative impact on nurse’s bereavement. [39]

Abnormal grief is discussed in more detail in a separate section.

Practice implications

  • Most people who experience normal grief do not require specialist counselling
  • People who experience intense distress over a prolonged period can be referred to -
    • Specialist bereavement counsellors
    • Palliative care services
    • Other mental health professionals with appropriate skills and expertise.


Evidence gaps

  • Tools which measure grief responses have not been assessed for use in the Australian palliative care setting. [18]
  • There is no clear consensus about how screening and assessment of bereavement risk should be performed by palliative care services. [15]
  • There is a trend in research which is critical of stage-based models of grief that suggest bereaved people ‘move on’ from their grief and relinquish the bond or connection to the dead person. [2,11]
  • Research suggests that normal grief differs from abnormal grief in a variety of ways, and that abnormal grief is distinct from other psychiatric diagnoses such as depression, anxiety and PTSD. Associated assessment tools and new treatment strategies are evolving based on improved understandings of these phenomena. [2,40]
  • Research is needed into the personal profile of those at risk of abnormal grief, including psychological characteristics and interpersonal factors, such as their perception of social and community supports. [9,41] Issues of screening, referral and how to match intervention to the individual require further research.
  • Specific grief considerations for different groups such as parents, [20-22] fathers, [23] children, [24,31] parents of children with chronic illness, [25] spouses, [26] those from different cultural backgrounds, [9] with intellectual disabilities, [25] in the setting of perinatal loss, [27] and in indigenous populations, need further investigation.
  • There is little evidence about the specific experience of people bereaved by suicide. [42]
  • There is limited research into how older people manage bereavement but there is promising evidence to support peer mentorship. [5]
  • Research into the efficacy of bereavement interventions needs attention. While specific bereavement interventions appear to assist those people experiencing abnormal grief, more detail is needed. Cost effectiveness of bereavement services has not been well studied. [3]
  • The grief experiences of health care providers have not been well-studied, but these may have significant impact on health service delivery, and result in both emotional and economic costs to the system. [38,39]


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Last updated 27 August 2021