Loss, Grief and Bereavement

“…restoring the fit between the world that is and the world that should be…”
from Parkes, CM. Bereavement. Mortality: Virtual Themed Issue 2003.

KEYPOINTS

  • Loss is a common human experience. How people experience loss varies tremendously.
  • Grief is a natural response to loss and there are no right or wrong ways for expressing grief
  • Grief can be experienced psychologically, behaviorally, socially and/or physically
  • Grief can be experienced in losses that are not always associated with death
  • Grief involves people finding ways to adapt and cope with change, explore meaning in their loss, and find ways to have a continued bond with the deceased
  • Emotions, expressions, and understandings of grief are specific to the person, and their relationship to their social, cultural and spiritual world
  • Rituals, customs and mourning practices have enormous spiritual, social, and personal significance for the dying and the survivors
  • Secondary stressors and life circumstances are risk factors that impact processing and adjustment to loss and death
  • Distress and positive emotions are possible at the same time
  • Stressful and difficult caregiving situations can impact grief and bereavement

CONSIDERATIONS

Supporting people through their losses, grief and bereavement involves attending to a wide range of possible experiences and contributing factors.

Language of Loss

Grief

  • Personal feelings, emotions and reactions to loss

Bereavement

  • The state of having experienced a death and the process of integrating the death into one’s life

Mourning

  • The private and public rituals, customs, practices and processes to loss

Anticipated grief

  • Grief or distressing experiences that may occur when a patient or family/caregiver is expecting a future change, loss or death

Difficult grief

  • May be influenced when there are multiple and/or concurrent losses and deaths – survival issues take priority
  • May occur when the loss or death is not recognized, valued or accepted in the family and/or community of the bereaved
  • May occur when specific social and cultural responses to grief are either intensified or suppressed
  • Sudden or unexpected death of patient or other person

Secondary losses

  • Other past, present, or future losses and experiences that have happened or may happen as a result of illness and death (e.g., loss of income, faith, support, identity and roles, social connections, personal relationships intimacy, home and other material resources)

Language of Grief

Grief can involve a combination of feelings, emotions, reactions and behaviours. Sometimes, these may seem to conflict with one another. This is a natural and normal part of processing, adjusting, and making meaning to the loss or anticipated losses. They are culturally and socially influenced.
Some examples include:

Physical

  • Symptoms of shock
  • Tightness in chest
  • Shortness of breath
  • Weakness, restlessness, lack of energy
  • Disruption to sleeping and eating patterns
  • Emptiness

Emotional

  • Numb, empty
  • Anger
  • Sadness, crying or wailing,
  • Helplessness, hopelessness, fear
  • Guilt, relief
  • Despair, feeling lost
  • Calm
  • Overwhelmed
  • Abandoned
  • Free
  • Anxious
  • Frustration, powerlessness
  • Conflicting emotions

Cognitive

  • Confusion, poor concentration
  • Self-blame
  • Disbelief
  • Forgetfulness, problems with short term memory
  • Pre-occupation with thoughts of the deceased
  • Acceptance
  • Lost sense of purpose
  • Shift in perspectives

Behavioural

  • Isolation, embarrassment, social withdrawal
  • Need for information or understanding from different sources
  • Pre-occupation with other tasks and responsibilities
  • Verbal expression of anger, silence, dissociation

Spiritual

  • Blame
  • Exploring hope and purpose
  • Wanting to die or join the deceased
  • Loss or strengthening of beliefs
  • Exploring continuing relationship with the deceased

Factors Impacting Grief and Bereavement

Personal

  • Coping skills
  • Circumstances of the illness and death
  • Involvement in the care of the deceased
  • Illness beliefs
  • Unresolved/concurrent losses
  • Addiction or mental health issues

Interpersonal

  • Relationship with person who died
  • Family dynamics
  • Gender, social and cultural expectations
  • Roles and responsibilities within family and community systems
  • Availability of cultural and/or language support
  • Competing and/or current stressors (e.g., other caregiving responsibilities, own illness, etc.)

Socio-economic

  • Access to immediate and on-going social support
  • Access to financial resources, stable living arrangements, employment

Cultural and spiritual

  • Access and availability of spiritual and cultural support systems
  • Access to traditional healing practices
  • Ability to conduct/participate in rituals, customs and mourning practices
  • Loss of meaning or faith

STRATEGIES

Grief and loss is experienced not only after the death of a loved one (bereavement) but can occur throughout the illness continuum. The following questions may be helpful during conversations with patients and family/caregivers to better understand and support their grief, loss, and bereavement experiences:

  • “What stresses or changes are you experiencing at this time (e.g., illness changes, difficulties coping, other life stresses)?"
  • “How are you feeling physically? What are you noticing?”
  • “What kinds of thoughts and feelings have you been experiencing recently?”
  • “How are you coping with your thoughts and feelings? Is there anything about your thoughts and feelings that you are concerned or worried about? What do you find helpful?”
  • “Who do you share your thoughts and feelings with? How do you share your thoughts and feelings with …? How do you support each other?
  • “Tell me about how you are managing with all of your other responsibilities, aside from caregiving for your loved one (e.g., family, employment, community responsibilities)?"
  • “Tell me about any important decisions that you are making, or are finding challenging to make?”
  • “What are your family, spiritual, and/or cultural traditions that are important for the health care team to know?”
  • “How are you finding ways to take care of your self (physically, emotionally, spiritually) during this time?”
  • “How can we support you? What would be most helpful during this time”
  • "What other types of support might you find helpful (e.g., spiritual support, community organizations, mental health professional, volunteer, etc.)?"

SOURCES/REFERENCES

  1. Bruera E, De Lima L, Wenk R, Farr W, editors. Palliative care in the developing world: principles and practice. 1st ed. Houston (TX): International Association for Hospice and Palliative Care; 2004.
  2. Cairns M, Thompson M, Wainwright W. Transitions in dying and bereavement: a psychosocial guide for hospice and palliative Care. Victoria (BC): Victoria Hospice Society; 2003.
  3. Doka K, Davidson J, editors. Living with grief: who we are, how we grieve. Hospice Foundation of America; 1998.
  4. Downing GM, Wainwright W, editors. Medical care of the dying. 4th ed. Victoria (BC): Victoria Hospice Society; 2006.
  5. Kumar S. Grieving mindfully. California: New Harbour; 2005.
  6. Librach L, Gifford-Jones W. Ian Anderson continuing education program in end-of-life care. Module 13: grief and bereavement. [Online]. Available from: URL:http://www.cme.utoronto.ca/ENDOFLIFE/Modules/GRIEF%20AND%20BEREAVEMENT%20MODULE.pdf
  7. Oliviere D, Monroe B, editors. Death, dying, and social differences. New York: Oxford University Press; 2004.
  8. Parkes, CM. Bereavement. Mortality: Virtual Themed Issue 2003. [Online]: Available from: URL:http://www.tandf.co.uk/journals/archive/bereave.pdf
  9. Parkes C, Laungani P, Young B, editors. Death and bereavement across cultures. London: Routledge; 1997.
  10. Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud 1999;23(3):197-224. http://www.ncbi.nlm.nih.gov/pubmed/10848151
  11. Klass D, Silverman P, Nickman S, editors. Continuing bonds: new understanding of grief. Washington: Taylor and Francis; 1996.

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