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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
  • Additional Links
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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

    Sustaining Personhood and Community

    Sustaining Personhood

    • Personhood is defined by society and may be threatened by illness
      • In Western society, personhood is largely defined as:
        • Being a subject with say over one’s body, emotions, decisions, and life goals

        • A set of character traits, a defining life story, or identity that makes it possible to say “I am John W. and not James X”

        • For many, it includes one’s role or relationships in a family or community

        • In the face of multiple losses and increased dependence on others for basic needs, those who are terminally ill may feel as if they are not the same person

        • Sometimes they feel as if they are not a person at all, but just a sick body
    • Spiritual care helps sustain personhood
      • Spiritual care aims to sustain one’s sense of being a person with value, dignity, and worth

      • These simple but often overlooked strategies may be employed by all members of the palliative care and hospice team to help sustain a sense of personhood:

        • Talk to the ill person rather than about them in their presence, even if they are not capable of complete understanding

        • Ask persons how they are doing or feeling before focusing on specific medical problems

        • Explore what it is that helps that person feel like a human being rather than just a “case” or “patient”

        • Acknowledge that this person is someone’s daughter or son, mother or brother

        • Offer choices and help persons identify areas where they can have some say to compensate for the tremendous loss of control and independence that accompanies a progressive terminal illness
    • Severe threats to personhood
      • In rare instances, a person’s identity can be so completely defined by one value, goal, or characteristic that the loss of this threatens to dissolve their personhood entirely

      • For some, the very essence of who they are would be lost if their disease led to a state of dependence on others and loss of bodily and mental functioning

    Example

    • Diseases affecting mental capacity
      • With diseases that affect mental capacity such as Alzheimer’s, brain tumors, or metastases to the brain, loss of personhood is a particularly painful reality for family members caring for their loved one

      • At the same time as a family is mourning the progressive loss of the person they knew, they may need to act as if they are the same person

      • Affirming the life story and contributions of the terminally ill person as well as naming the place that person has in the life of those present is one way to help sustain the sense of personhood
        Case Example

        Mr. and Mrs. M. had been married 50 years when Mrs. M. was diagnosed with end stage glioblastoma. As the disease progressed, she no longer spoke, made no meaningful eye contact or gestures, did not respond to even simple commands, and showed no sign of recognizing the voice or presence of her husband. Mr. M. would periodically despair and ask members of the hospice team if they could do something to end this. “She’s gone, she’s not here anymore. What’s the point?”

        On other days, he would persist, however, in telling her about his day, caressing her arms, and advocating for respectful treatment of her by the nurses and aids who came to the home. “She’s not a piece of meat, you know. She’s a human being. She’s still my wife.” As time went on, he came to believe that somehow she knew he was there, that the bond of love they shared was deeper than the mind could grasp, and that his presence and love for her was making a difference, even if it couldn’t change the course of the disease.

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    Sustaining Community

    • Sustaining a sense of community is important during the dying process
      • Sustaining a dying person’s sense of community is an important spiritual need even as those social roles and bonds are being changed, if not ended, by death

      • Community may involve a sense of connection with any or all of the following:
        • Family
        • Friends
        • Work place
        • School
        • Local organizations
        • Faith community
        • A divine being
    • Roles within these various communities will inevitably change as the person’s health declines
      • Persons may need to explore what it means to go from one role to another
        • Caregiver to the person being taken care of by others
        • Church leader to congregant receiving pastoral care

      • Persons may also need to mourn the loss these transitions entail

      • Sometimes it is possible to affirm continued role as mother, provider, teacher, minister, caregiver by redefining what that means under these new circumstances
    • All members of the end of life care team can encourage and facilitate ongoing involvement between patient and community
      • Educating members of these communities both about the importance of their presence

      • Educating community members about how to interact in meaningful, helpful ways with the terminally ill person

      • Requesting the involvement of faith communities if this is desired by the patient and family
      • Coming to the residence of the person who is ill

      • Helping with transportation to services

      • Providing practical assistance such as:
        • Respite for the caregivers
        • Meals
        • Running errands

      • By remaining involved in the life of the persons as they face their illness and death, members of faith communities may help:
        • Affirm the value of the person
        • Give hope that their family will not be alone
        • Mediate a sense of divine presence
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