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Modules:

  • 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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    Back to Module 16: Social and Psychological Considerations
    Understanding the Psychological and Social Experience of a Dying Person

    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

    Understanding the Psychological and Social Experience of a Dying Person

    Awareness of Impending Death

    • For most of us, the inevitability of our own death can be denied, repressed, or otherwise not considered
    • For the dying person, awareness of impending death can not be avoided
      • Awareness of approaching death is integrated

      • Life’s activities, relationships, goals and meanings are reorganized and restructured in light of approaching death
    • How does a person realize that they are dying? (adapted from Rando, 1984)
      • Direct statement from a physician, other health care professional, family member, or other

      • Overheard comments by physicians, other health care professionals, family members, or others

      • Changes in the behavior or language of others

      • Changes in medical care procedures

      • Changes in physical placement (e.g., transfer from hospital to extended care facility)

      • Self-diagnosis

      • Awareness of bodily sensations

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    Four Types of Death (Sudnow, 1967)

    Social

    • Shrinking social network as lifestyle changes
    • Other withdraw from dying person, defensively
      • Anxiety
      • Intense anticipatory grief
      • Uncertainty about role with dying person
      • Discomfort with awareness of own mortality

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    Psychological

    • Regression and dependency as the person is no longer able to function as autonomously as before
    • Grief with experience of multitude of losses
      • Activities
      • Roles
      • Abilities
      • Long-term goals and aspirations
      • Relationships
      • Personality
      • Basic sense of identity and self
    • Other emotions
      • Fear
      • Depression
      • Anger
      • Guilt and shame
    • Hope
      • It is surprising to some that a person who is dying can be hopeful
      • However, hope does not have to be directed toward the distant future
      • Hope can be for…
        • Accomplishment of short term goals
        • Relief from pain and suffering
        • Self efficacy in immediate tasks and activities
        • Satisfaction in relationships
        • Strong and positive self-esteem
    • Biochemical changes in emotions, cognitions, and behavior due to progression of illness and medications
    • Withdrawal of others limiting social relationships
    • Withdrawal from the world outside the self and increasing awareness of inner life

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    Biological

    • Organism as a human entity no longer exists
    • Life support may be used, but consciousness and awareness in self-sustaining mind-body organism is not present

    Physiological

    • Cessation of all vital organs and systems

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    Tasks of the Dying Person (Moos & Tsu, 1977; Rando, 1984)

    • Awareness of and coping with
      • Physical, social, psychological discomforts and incapacitation
      • Stresses of special treatment and care facility
      • New relationships with caregivers
    • Preserving and maintaining
      • Emotional balance in the face of increasing uncertainty and losses
      • Self-image and sense of competence
      • Important interpersonal relationships
    • Preparing for uncertain future
      • Arrange to handle a variety of affairs
        • Debts
        • Will
        • Messages for friends, neighbors, co-workers
        • Funeral and burial arrangements

      • Providing for the welfare of those left behind
      • Anticipate and plan for future medical care needs
      • Finances, possessions
      • Reunions with significant others
      • Anticipate and prepare for future pain, discomfort, and loss of abilities
    • Coping with anxiety
      • Fear of unknown
      • Fear of loneliness
      • Fear of loss of family and friends
      • Fear of loss of self-control
      • Fear of loss of body parts and disability
      • Fear of suffering and pain
      • Fear of sorrow
      • Fear of loss of identity
      • Fear of regression
      • Fear of mutilation, decomposition, premature burial
    • Coping with losses
      • Activities
      • Roles
      • Responsibilities
      • Social relationships
      • Unfinished and incomplete tasks, goals, and plans
      • Values
      • Life meanings
      • Self and identity and with the death encounter
      • Abilities to take care of one’s self
      • Basic emotions, thoughts, behaviors
    • Decisions
      • Slow down or speed up the dying process
      • Selection of surrogate decision makers

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    How Can a Health Care Professional Help the Dying Person with Social and Psychological Concerns?

      • Be available to listen to concerns

      • Communicate your ability to be present with the dying person verbally and nonverbally

      • Clarify to make sure that you understand concerns

      • Provide clear, simple information on how person’s symptoms, problems, and concerns can be addressed

      • Ask clarifying questions to make sure that you understand the person and that the person understands the end of life care team

    • Communicate respect and acceptance of the dying person
      • Develop an awareness of the values and beliefs of the dying person and family

      • Allow the dying person as much control as is possible in end of life care and living situation

      • Maintain realism about expectations for the person’s needs and care, but avoid direct questioning of coping mechanisms such as denial

        • Allow the person to use coping resources even when these seem to minimize the seriousness of the situation

        • Coping mechanisms, such as denial, may be the best or only way for the person to live with a highly stressful and discouraging reality without being overwhelmed
    • Avoid withdrawing prematurely from the dying person
      • As health care professionals, we may have difficulty with our own grief and pain in seeing someone die

      • A natural response is to withdraw from these difficult and painful emotions

      • It is extremely important to be aware of this response, however, and to avoid abandoning the person who is dying
    • Accept that dying may be very difficult for the person
      • Avoid minimizing painful emotions when they are expressed

      • Avoid communicating an overly positive view of dying, especially when it is clear that the person’s experience is not good

        • Important for health care professionals to be aware of their wishes or desired that people die a “good” death

        • While working to make the process of dying better for our patients, it is important to recognize that often death is not beautiful
    • Avoid telling the dying person something that is not true
      • This will erode trust and confidence in you as a health care professional

      • Contributes to anxiety and fear in the dying person

      • Can undermine the person’s self-confidence as well as trust in the end of life care team
      • Convey respect for full range of concerns that the dying person may have—physical, social, psychological, spiritual, financial, etc.

      • Ensure that the dying person can recognize all the members of the end of life care team and understands their roles and how they can help
    • Communicate your commitment to provide care for the dying person and ensuring that her or his concerns and needs in dying are addressed
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