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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
  • More About:

  • Hospice Care
  • Clergy and Faith Communities
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    Back to Module 14: Table of Contents
    Part II: Common Needs and Goals

    Click here for a Special Note
    Finding Hope
    The Search for Meaning
    Sustaining Personhood and Community
    Coping with Change and Uncertainty Taking Care of Unfinished Business/The Need for Forgiveness
    Fear of Death, Questions About Life After Death & Spiritual Care at the Time of Death

    Coping with Change and Uncertainty

    Change and Uncertainty: The Challenge

    • Change and uncertainty are inevitable at the end of life
      • Many persons with life-limiting diseases and their family members describe this time as “being on a rollercoaster” or venturing into “unknown territory”

      • Though the ultimate outcome (death) may be clear and accepted by all, the days and months in between are filled with uncertainty
    • Change in functioning at the end of life is unpredictable
      • One day a person may feel relatively good, the next day any number of symptoms may appear without forewarning

      • How the ill person or their family will respond emotionally to the many changes that are to come is unpredictable

      • Even when physicians are willing and able to provide a prognosis, no one knows the precise timing of this particular dying process

      • Fear, anxiety, and feelings of powerlessness are nearly universal

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    Change and Uncertainty: What Health Care Professionals Can Do

    • Listen and normalize fears
      • Provide an opportunity for persons to talk about the source of their anxiety or fear

      • “Being heard” in and of itself can sometimes lessen the spiritual distress
    • Help identify sources of comfort and order
      • Helping persons identify something that is solid, trustworthy, or that provides a sense of order and direction is another useful strategy

      • Sources of comfort and order may include…
        • Other people
          • This may be a family member they can count on

          • It may also be the palliative care team with their knowledge of what the dying process usually looks like physically, what the customary emotional responses to change are both for the patient and family, and what practical care needs may arise as the disease progresses

        • Spiritual and religious traditions
          • These frameworks are often a source of comfort in the face of such uncertainty

          • From secular spiritual practices such as “take it one day at a time” to religious beliefs in a divine being who has predetermined the timing of one’s death, such frameworks help persons cope with what is not in their control

        • Ritual is another useful resource for reestablishing a sense of order
          • Rituals need not be elaborate, precisely defined spiritual practices

          • Include ordinary habits
            • Bathing at the same time every day
            • Saying goodnight to a spouse with the same words each evening

          • When a nurse or volunteer keep regularly scheduled appointment times, this can help establish order

          • For adherents of religious traditions, maintaining proscribed rituals will be especially important, albeit challenging

          • Some creativity might be needed to adapt these rituals to meet the physical or cognitive limitations of the person who is ill

    Example

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