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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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  • 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

    The Search for Meaning

    The Question of Why

    • Questioning is common at the end of life
    • Many forms of suffering may accompany a life threatening illness:
      • Physical pain
      • The loss of independence
      • Watching a loved one decline and feeling powerless to change the course of the illness
    • This suffering leads many persons to question “why?“
      • Why is this happening to me?
      • Why my loved one?
      • Why now when we’ve just retired?
      • Is there a reason or purpose for this life-altering event?
    • Spiritual and religious frameworks can provide meaning in the midst of suffering
    • Suffering can be made bearable, and maybe even transformed into an opportunity for personal growth and healing, with the aid of such frameworks of meaning
        Case Example
        Mrs. Allen’s lung cancer progressed very slowly. Though her respiratory symptoms and pain were well controlled, she suffered considerably from being unable to care for her own
        bodily functions, manage her own household, and remain active in her church. Initially, Mrs. Allen was able to cope with these losses and remain in good spirits by believing that her daughters needed this time to “prepare” for her death. For a while, she found meaning in the belief that God was helping her grow spiritually in and through this state of dependence. As the months wore on, however, and these reasons for being alive were fulfilled, Mrs. Allen despaired. She prayed for God to take her. With the help of the hospice team, she found renewed strength and peace by affirming her long-standing belief that “God has a plan and purpose for everything, even if He doesn’t tell us what it is.” To remain faithful was the answer to her quest for meaning.

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    What Can Be Done to Help those who are Suffering and Questioning

    • Let patients and families feel heard
      • Patients and families need permission to express their sense that there is no point or meaning

      • As with the loss of hope, good spiritual care by the palliative care team allows for these feelings to be heard
    • Respond to expressions of self-blame or anger at God
      • Often, unrelieved suffering leads persons to blame themselves or God

        • “I must have done something to deserve this kind of life”

        • Normalizing these feelings and reviewing with the person their life history may bring some release from blame, even as it may leave the person with no good explanation for their suffering

      • If self-blame or anger at God persists, the chaplain or counselor should be notified
    • Take cues from the patient and family
    • It is not appropriate to impose your own explanations or reasons
    • It is better to explore, probe, and even offer some ideas drawn from the life history of the patient or from observations of family dynamics

    Example

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    Sense of Purpose and Identity

    • A life-threatening illness can challenge sense of purpose and identity
      • The search for meaning and purpose by persons facing a life-threatening illness may also express itself through questions such as:
        • Who am I now?
        • What good am I?
        • What purpose does my existence serve?
        • Who am I now that I can no longer work, provide for my family, teach, cook for my spouse, take care of others, be a cantor in my temple, garden, socialize with friends?
    • Mourning, affirming, and redefining purpose and identity can help in the search for meaning
    • It is appropriate and important to mourn parts of one’s life and identity that are indeed taken away with the progression of disease
    • Equally important is affirming a sense of continuity with who one has been in the past
    • It might also be appropriate to help persons redefine their current purpose and identity

    Examples

    • When Meaning and Purpose Can’t Be Found
      • When no meaning or purpose is to be found, relief can sometimes come through “distraction therapy”

      • “You are still here: Can we see if there is something you can do to get your mind off of just waiting to die?

    Examples
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