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  • Introduction
  • 1. Advance Care Planning
  • 2. Communicating Bad News
  • 3. Whole Patient Assessment
  • 4. Pain Management
  • 5. Assisted Suicide Debate
  • 6. Anxiety, Delirium
  • 7. Goals of Care
  • 8. Sudden Illness
  • 9. Medical Futility
  • 10. Common Symptoms
  • 11. Withholding Treatment
  • 12. Last Hours of Living
  • 13. Cultural Issues
  • 14. Religion, Spirituality
  • 15. Legal Issues
  • 16. Social and Psychological
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    Site Index
    Back to Module 16: Social and Psychological Considerations
    Grief of the Dying Person and Survivors

    Understanding the Psychological and Social Experience of a Dying Person
    Grief of the Dying Person and Survivors Special Considerations for Families
    Caring for Oneself as a Health Care Professional

    Grief of the Dying Person and Survivors

    Grief is neither a disorder nor a healing process: it is a sign of health itself, a whole and natural gesture of love. Nor must we see grief as a step towards something better. No matter how much it hurts--and it may be the greatest pain in life--grief can be an end in itself, a pure expression of love--Gerald May, M.D.

    Why Do We Grieve?

    • Attachment theory—Bowlby
      • Attachment occurs in absence of the reinforcement of biological needs, e.g., food
      • Based on need to safety and security
      • Observed in animals and humans
      • Develop early in life, are directed toward a few specific individuals and tend to endure
      • Grief occurs with the loss of the attachment bond
    • Reestablish equilibrium--Worden
      • Mourning is necessary
      • After a loss is sustained, a healing process is necessary to re-establish equilibrium


    What is Grief?

    Multidimensional response to loss

    • Emotional
      • Anger
        • Frustration with helplessness to change the situation
        • Regressive experience
      • Guilt and self-reproach
      • Anxiety
        • Fears about not being able to take care of oneself after the loss
        • Heightened sense of own mortality
      • Loneliness
      • Fatigue
      • Helplessness
      • Shock
      • Yearning
      • Emancipation
      • Relief, especially after the dying person has suffered during a lengthy illness
      • Numbness
    • Physical
      • Hollowness in stomach
      • Tightness in chest and throat
      • Heightened sensitivity to noise and light
      • Depersonalization
      • Breathlessness
      • Weakness
      • Lack of energy
      • Dry mouth
    • Cognitive
      • Disbelief
      • Disorientation
      • Confusion
      • Preoccupation
      • Sense of presence (feeling that the deceased is in the room or close by)
      • Hallucinations
      • Sleep and appetite disturbances
      • Social withdrawal
      • Dreams of the deceased
      • Avoiding reminders of the deceased
      • Searching or calling out for the deceased
      • Sighing
      • Restlessness
      • Crying
      • Visiting places or carrying objects that remind one of the deceased
      • Treasuring objects of the deceased

    Depression and Normal Grief

    • Important to note that a full depressive reaction may accompany normal grief response
    • However, typically grief does not include the loss of self-esteem or overall sense of guilt which goes with depression
    • Grief may develop into a depression


    What Determines the Intensity and Duration of Grief?

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    • Type of loss
      • Loss of a child versus loss of a grandparent
      • Loss of a parent versus loss of a friend
    • Nature of the attachment
      • Strength of the attachment--Intensity of grief will be proportionate to the intensity of the relationship
      • Security of the attachment--How necessary was the deceased for the sense of well-being of the survivor
      • Ambivalence in the relationship--Coexisting positive and negative feelings
    • Mode of death
      • Natural, accidental, suicidal, homicidal
      • Sudden and unexpected versus advance warning
      • Geographic location of death
      • Traumatic, violent
    • Historical antecedents
      • Experience of earlier losses
      • History of depression
      • Previous stresses
    • Personality variables
      • Coping resources and styles
      • Psychological resilience
      • Optimism
    • Social and cultural factors
      • Traditions and rituals may facilitate grief
      • Social network


    What Are the Tasks of Grief? (from Worden)

    • Accepting the reality of the loss
      • Denial impedes this task
        • Disbelief that the loss has occurred
        • Denial of the meaning of the loss
        • Denial that death is irreversible

      • Acceptance must include understanding that the loss has occurred and the death is irreversible
    • Experience the pain of grief
      • Social expectation may make resolution of this task difficult, e.g., others may try to distract the bereaved from the pain

      • Ways of not experiencing affect
        • Over involvement in work
        • Idealizing the deceased
        • Geographic cure
        • Minimizing the significance of the loss

      • Thought that depression may occur if this task is not resolved
    • Adjusting to an environment in which the deceased is missing
      • Survivor may not be aware of all the roles filled by the deceased until the loss occurs

      • Survivor may have to take on new roles, develop new skills

      • If this task is not resolved, helplessness may occur
    • Withdraw emotional energy and reinvest it in another relationship
      • Many people misunderstand this task and are unable to work through it

      • Some people believe that to reinvest emotional energy in someone else is to dishonor the dead

      • Fear of the prospect of experiencing new loss may impede the successful working through of this loss


    What Are the Stages of Grief?

    • Elizabeth Kubler-Ross (1969) suggested grief be seen as occurring in five stages:
      • Denial and isolation
      • Anger
      • Bargaining
      • Depression
      • Acceptance
    • While the stage concept has been criticized, this framework has been valuable in considering that—
      • Variety of emotions and other responses may occur during grief

      • Emotions and other grief experiences may change over the time during and after the loss
    • However, it appears that most people do not progress through the stages in a systematic way or in a specific order
      • A person may respond with anger first and later experience denial

      • A person may have some acceptance early after the loss and later show greater depression


    How Is Grief Resolved?

    • Impossible to place a time limit: may be a long term with a close attachment (one year or more)
    • A process
      • Grief work—refers to the mental and behavioral processing of the loss

      • Gradual evolution of thoughts, emotions, and experiences, toward greater acceptance of the loss and emerging ability to resume life without the deceased


    Nine Ways to Help With Grief (from Worden, 1989; Rando, 1984; Cook & Dworkin, 1992; Bertman, 1991)

    1. Increase the reality of the loss: Talking and traditions help

    • Especially important early after the loss
    • Provide ways to allow family members to say goodbyes at the bedside, before death when possible
    • Encourage family members to provide care for the dying person and recognize their contributions (all can say that they were there and did as much as was possible)
    • Encourage and support the family as they follow cultural and social traditions and rituals related to death and grief
    • Express sympathy
    • Listen to family members talk about the deceased and their experiences grieving
    • Encourage reminiscing

    2. Allow time and place for the expression of feelings

    • Provide for a quiet room free of distractions
    • Offer tissues
    • If appropriate, given the person’s culture and the social situation, a touch on the shoulder or hand may provide a tangible gesture of concern and support
    • Make telephone available for family members to contact significant others
    • Verbal permission to grieve or express emotions and thoughts
    • Listen without judgment

    3. Normalize feelings

    • This is especially important when the bereaved feels anger or relief with the loss, or other emotion that may be perceived as inappropriate
    • Let person know that ambivalent feelings are normal and common
    • Very important not to minimize feelings, however

    4. Reality test

    • Help the bereaved person understand difficult feelings in the context of the situation
        For Example
        Helping a person understand feelings of relief and guilt after the death occurs in the context of being overwhelmed during the dying process due to the demands of care giving and anticipatory grief

    5. Help with problem solving as survivor adjusts to an environment without the deceased

    • Practical discussion of new roles and responsibilities for survivor
    • Help survivor break down tasks into small steps that can be accomplished
    • Identify sources of support in community
    • Referral to social service, financial advisors, counselors

    6. Discourage major life decisions too soon

    • Expected that the bereaved will be faced with many life decisions and will need to make life changes after the loss of loved one
    • However, making some major life decisions early in the grieving process may be counterproductive or may be destructive, e.g.,
      • Moving
      • Marriage
      • Pregnancy
      • Change in employment
    • When is it “too soon?”
      • Experience of intense, fresh grief
      • Difficulty accepting the pain and reality of the loss
      • Difficulty starting new activities without the deceased
      • Complicated grieving

    7. Encourage healthy reinvestment of emotion

    • Previous roles and responsibilities
    • New activities and relationships

    8. Allow for individual differences

    • Broad range of emotions and other experiences during grieving
    • Variation in the time needed to grieve

    9. Provide continued support

    What are the benchmarks of grief resolution?

    • Survivor is able to talk about the deceased without intense affect
    • Survivor can reinvest emotions in another


    Special Problems

      Failure to Grieve
    • Relationship factors--ambivalence, narcissistic or dependent relationship
    • Uncertain losses—Missing In Action (MIA) or multiple losses
    • Historical factors--depressive illness, difficult prior experience with bereavement
    • Personality factors
      • Unable to tolerate intense feelings
      • Unable to tolerate dependency feelings
    • Social factors
      • Death is unacceptable to social group
        • Suicide
        • Death of murderer

      • Mourning is not accepted in social group
        • Abortion
        • Fetal death

      • Absence of social support network
      Avoidance of Grief
    • Idealization of the deceased
    • Chronic anger with the deceased impeding the ability to recognize the significance of the loss
      Chronic Grief
    • Grief continues for prolonged period without the survivor feeling resolved
    • Several years after the loss, unrelated events trigger intense, fresh grief
    • Loss is discussed in daily conversations even several years after the loss
    • Years after the loss the bereaved has not resumed daily activities
      Delayed Grief
    • Survivor not able to grieve due to competing stressors
    • Grief occurs at a date after the death in response to another loss or a reminder of the loss
      Exaggerated Grief
    • Development of phobias
    • Disabling helplessness
      Masked Grief
    • Other responses or symptoms are more prominent than grief
    • Thought to occur when normal grief cannot be expressed because of social sanctions, other stressors occurring during the loss, etc.
    • Examples…
      • Child who acts out
      • Headaches emerge at time of loss
      • Neglect of health
      • Impulsive decision making
    • Grief occurring in advance of the loss
    • Often seen among family members who expect the future the loss of their loved one
    • A dying person can experience anticipatory grief

    One Person’s Experience


    What is the Difference Between Grief and Clinical Depression?

    • Because both grief and clinical depression are associated with intense, sad mood, difficulty with the experience of pleasure, sleep disturbance, and loss, it may be difficult to distinguish among them
    • Important to identify those persons who are experiencing clinical depression in order to provide the appropriate intervention
    • Grief can occur without having clinical depression; however, a clinical depression can develop during the grief process
    • Usually, when a person is clinically depressed they have many more negative thoughts about themselves than when a person is grieving

    Table Adapted from Cook & Dworkin, 1992

    Uncomplicated Grief Clinical Depression
    Loss Recognizable and current Often associated with a loss, but the loss may be symbolic, loss is not always recognizable
    Reactions Initially intense, then variable Intense and persistent
    Mood Labile, acute (not prolonged), heightened when thinking about loss Consistently low, pervasive, chronic, may express an absence of emotion
    Behavior Variable, shifts from being able to share pain to wanting to be alone, variable refusals of enjoyable activities Refusals of most previously enjoyed activities, no enthusiasm, consistent difficulty enjoying activity
    Anger Often expressed Thought to be self-directed
    Sadness Periodic weeping or crying Little variability (inhibited or uncontrolled expression)
    Cognition Preoccupied with loss, confusion Preoccupied with self, worthlessness, self-blame, hopelessness
    History Little history of psychiatric disorder Previous history of depression or other psychiatric disorder
    Sleep Periodic difficulties falling asleep and with early morning awakening Regular early morning awakening
    Imagery Vivid dreams, capacity for imagery and fantasy Self-punitive imagery
    Responsiveness Responds to warmth and assurance Hopelessness and helplessness limit responsiveness to others


    When Is Professional Help Needed?

    • Intense fresh grief with discussion of deceased, long after loss
    • Minor event triggers intense grief reaction
    • Themes of loss continue long after loss has occurred
    • Survivor unwilling to move material possessions of deceased
    • Survivor experiences physical symptoms of deceased
    • Radical change in lifestyle
    • History of depression, or other psychiatric disorder
    • Compulsion to imitate deceased
    • Self-destructive impulses
    • Unaccountable sadness
    • Phobia about illness or death


    What is the Difference Between Grief Counseling and Support Services and Grief Therapy?

    • Grief counseling and support services are best for individuals who are experiencing grief that would not be considered “complicated”
      • These individuals may have experienced losses in the past and have coped, and will likely be able to cope with the present loss without professional help

      • These persons can still benefit from
        • Education about the grief process
        • Opportunity to express grief with others experiencing similar feelings (as in a grief support group)
        • Help with problem solving as they adjust to their lives without the deceased
        • Discussion and evaluation of life changes and decisions

      • Goals are to…
        • Support persons as they go through the grieving process
        • Prevent complicated grief reactions

      • Support services may be provided by peers (others going through similar experiences), hospice volunteers, or professional counselors
    • Grief therapy is provided when a person is experiencing “complicated grief”
      • Individuals referred to grief therapy often have pre-existing personality, mood, behavior, or thought process problems that interfere with normal grief

      • Some circumstances of death may contribute to the need for referral (e.g., war, murder, suicide, loss of child, multiple losses)

      • Grief therapy involves help with the pre-existing or underlying issues as well as with the grief process
        • Professional help
        • Medication may be used (e.g., anti depressant)
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