W13: Death & Dying

Terminology

• Bereavement: The state of having lost someone.
• Grief: A wide range of responses to loss.
• Mourning: The behavioral expression of grief, influenced by cultural and public norms.

Age Distribution of Death

• In 1907, 26% of deaths were children under the age of 4.
• In 2020, only 0.7% of deaths were children under the age of 7.
• Factors contributing to this shift include:
  • Improved neonatal care
  • Increased medical support for children
  • Greater community awareness of risks
  • Advancements in sanitation and hygiene
  • Infant vaccinations

Age at Death in Australia

• In 2022, most deaths (~65%) occurred among people over the age of 75.
• The median age of death for men was ~80, while for women it was ~85.

Causes of Death in Australia

• Men:
  1. Coronary heart disease
  2. Dementia
• Women:
  1. Dementia
  2. Coronary heart disease

Causes of Death by Age

• First year of life: Congenital issues, premature birth
• Children: Accidents
• Adolescents and young adults: Suicide

The Experience of Dying

• Brain death or circulatory death: Signals "death."

• Physiological processes:

  • Digestive and respiratory functions begin to shut down.
  • Circulation slows, leading to a significant drop in blood pressure.
  • Breathing becomes shallow and sporadic; rattling sounds may occur.
  • Agonal breathing (gasping, labored breathing caused by abnormal brainstem reflex) may occur.
  • The dying individual may sleep more and talk less, but can still hear.

• Brain death:

  • Different from a vegetative state or coma (where the brainstem remains active).
  • Can remain on life support to preserve organs.
  • The active stage typically lasts ~3 days but can be shorter or longer.

Understanding Death

• Infants and toddlers: Limited understanding of death.
• Pre-schoolers: May believe death is temporary or reversible.
• Around age 5: Begin to understand that death is irreversible.
• 7-9 years old: Understand that death only happens to living things, that all living things will die, and that all bodily functions will stop.
• By 10 years old: Understand internal and external factors that can cause death.

Fear of Death

• Can appear as young as age 3.

• Increases between ages 5-10 as understanding of death develops.

• By age 7 and through adolescence, fear of death is the most common fear.

• Fear of death is lowest among older adults.

• Cultural influence:

  • Many cultures try to ignore and avoid mortality.
  • It is not clear whether death anxiety is cultural or universal, as there is variability across cultures.
  • Some cultures are more death-affirming (e.g., Day of the Dead in Mexico)

• Terror Management Theory:

  • Motivation to live + Inevitability of death = Existential terror
  • Fear of death is managed by:
    • Belief in cultural worldviews
    • Gaining symbolic immortality
    • Subscribing to things that will outlive you (e.g., political views, historical impact)
    • Religious beliefs that promise a form of immortality
    • Self-esteem boosting practices
    • Close interpersonal relationships

• Mortality Salience:

  • Proximal Defenses:
    • Trying to push death out of mind
    • Denying vulnerability to death
    • Denying current risk of personal death
    • Distracting from death thoughts
    • Intention to engage in future healthy behaviors
  • Distal Defenses (unconscious thoughts about death):
    • Worldview defense
    • Self-esteem bolstering
    • Affirming close relationships

Coping with Death Fears

• Death fears can motivate:

  • Materialism
  • Health behaviors
  • Self-esteem bolstering
  • Adaptive coping (e.g., increased photography, art, legacy, family names)

• Fear of death can be a transdiagnostic construct for a range of mental health problems (e.g., panic, OCD, separation anxiety, phobias, depression).

• Correlations exist between death anxiety and the severity of mental disorders.

• Death anxiety can be reduced with treatment, especially CBT.

• Goal of treatment is neutral death acceptance.

Kubler-Ross Stages of Psychological Reaction to Dying

• Introduced in 1969.
• Cultural shift in the dialogue about death - more public.
• Stages:
  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance
• Critique:
  • Stages were never intended to be linear or universally applicable.
  • Not everyone reaches acceptance.
  • It is problematic to push someone through these stages.

End-of-Life Issues

• 70% of people desire to die at home, but only 14% do.

• Psychological issues during end of life:

  • Issues related to consent, advanced care planning, and palliative care.
  • Developmental issues:
    • Meaning and impact of illness
    • Coping styles
    • Impact on sense of self and dependence on care
    • Relationship changes (those who need to become caregivers)
  • Stressors:
    • Spiritual resources
    • Anger when young children are dying (sense of unfairness)
    • Regret in older age
    • Economic circumstances (ability to afford treatment)
  • Physician-patient relationship:

• Factors that assist with coping at end of life:

  • Hospice/palliative care associated with better quality of life, less depression and anxiety compared to aggressive life-prolonging treatment.

  • Factors associated with effective coping:

    • Good communication and trust between the patient, family, and clinical team.
    • Pain management.
    • Ability to share fears and concerns.

  • Most terminally ill patients benefit from an approach that combines:

    • Emotional support
    • Flexibility
    • Appreciation of the patient's strengths
    • A warm and genuine relationship with the therapist
    • Elements of life-review and exploration of fears and concerns

  • Little evidence supports the claim that psychological therapy is superior to other therapies at end of life.

Grief

• Affective experience: Sadness, yearning, loneliness, anger, guilt, relief, anxiety, numbness.
• Cognitive experience: Decline in short-term memory, decision-making, concentration. Increased rumination and confusion.
• Physical symptoms: Sleep disturbances, appetite changes, fatigue, increased risk of illness, increased risk of mortality, impaired immune function, crying.
• Spiritual: Renewal or loss of faith, loss of meaning.
• Social: Detachment or conflict.
• Death anxiety can exacerbate grief.
• Most people recover from grief after a brief period of disruption (acute grief), returning to an emotional baseline (integrated grief) typically within 6-12 months post-loss.
• Often considered the price we pay for love.
• Not about saying goodbye; rather, it’s a change in the relationship (from physical presence to memory).
• Problems during grief: Can arise from other people's reactions.

Patterns of Grief

• Stable low grief symptoms: 26-45%
• High (20%) or moderate (30%) grief immediately post-loss
• Low initial grief that increases post-loss: 10%
• Stable high levels of grief: 7-10%

Bereavement as a Disorder

• In March 2022, the DSM-5-TR added Prolonged Grief Disorder (PGD).

• Symptoms of PGD:

  • Intense yearning or longing for the deceased, and/or preoccupation with thoughts or memories of the deceased present most days.

  • Bereavement lasting over a year (for children, 6 months).

  • Clinically significant distress or impairment in functioning.

  • 3 or more symptoms:

    • Identity disruption
    • Marked sense of disbelief
    • Avoidance of reminders
    • Intense emotional pain
    • Difficulty with reintegration
    • Emotional numbness
    • Feeling that life is meaningless
    • Intense loneliness

Risk Factors for PGD

• Older age
• Female
• Lower SES
• History of depression, bipolar disorder, or childhood adversity
• Early depression symptoms post-loss
• Caregivers
• Sudden or traumatic death circumstances
• Maladaptive thoughts
• Avoidance behaviors
• Inability to manage painful emotions
• Lack of social support

Treatment for PGD

• No evidence that early intervention is preventative.
• Treatment is not focused on saying goodbye to the deceased.
• Incorporates elements from attachment theory.
• CBT:
  • Focus on loss-focused and restoration-oriented coping
  • CBT for associated problems, including:
    • Sleep problems
    • Major depressive disorder (MDD)
    • PTSD
    • Anxiety
• Bereavement groups: May help in acute stages, but there’s no evidence that they will help prolonged grief.
• Pharmacotherapy: Unlikely to be effective.

Theories of Bereavement

• Old: Kubler-Ross Stages

• Current models:

  • Dual Processing Model:
    • Proposes that when a loved one dies, it has many secondary consequences on life.
    • People will oscillate between loss-oriented coping and restoration-oriented coping.
    • The need for flexibility in coping, not focusing on only one aspect.
  • Reconstruction of Meaning:
    • Death can disrupt life narratives and core beliefs about the world.
    • Coping with grief involves creating new meaning through:
      • Sense-making
      • Benefit-finding
      • Identity reconstruction
    • Meaning is reconstructed via:
      • Assimilation: Finding a new way to think about the loss that doesn’t challenge core beliefs
      • Accommodation: Thinking differently about the world

• Attachment Theory (Bowlby)

  • Secure: Might react emotionally to loss but not overwhelmed by grief.
  • Dismissive: Less emotional reaction; suppress/avoid memories.
  • Preoccupied: Chronic grief, high emotionality and expressiveness of grief, inability to talk or cope constructively.
  • Disorganized: Difficulty talking coherently, poor adaptation.

• Continuing Bonds (Klass, Silverman, and Nickelman)

  • Challenges the belief that to successfully cope, you need to let go of the person.
  • Moves bonds from a concrete attachment to a symbolic attachment.
  • Mixed research outcomes on whether continuing bonds help adjustment.
  • More recent recognition of individual differences in continuing vs. relinquishing bonds.
  • For some people, continuing will be beneficial depending on:
    • Relationship quality
    • Attachment
    • Functioning during bereavement

• Mental Representation Theory: - Ongoing internal connection to a deceased loved one. - Stored in explicit memory and can be retrieved for comfort or discomfort. - Explicit and implicit representations affect the extent and kind of bond to the deceased. - Adaptive coping involves both connection and disengagement. - Adaptation involves:

  • Primary control: Environment-oriented coping
  • Secondary control: Emotion-focused coping

- Individual differences in disposition.

• Growing Around Grief (Tonkin)
  • Grief doesn't always get smaller, but we get bigger around it.
  • We become able to live alongside the grief.