chapter 25

Chapter 25: Care for the Dying and Those Who Grieve

Objectives

1. Understanding Palliative Care vs. Hospice
      - Discuss and differentiate between palliative care and hospice in terms of:
        - (a) Purpose
        - (b) Philosophy and goals
        - (c) Settings
        - (d) Various supports available to families

2. Terms Related to Loss
      - Compare and contrast the terms loss, grief, mourning, and bereavement.

3. Indicators of Healthy Bereavement
      - Identify the behavioral outcomes that indicate healthy bereavement.

4. Symptoms of Complicated Grief
      - Delineate at least five symptoms of complicated grief.

5. Normal Grief Process Phenomena
      - Discuss and give examples of various phenomena experienced during the normal grief process (e.g., sensations of somatic distress, changes in behavior).

6. Interventions for Complicated Grief
      - Describe three short-term interventions to help individuals experiencing complicated grief come to terms with their loss.

7. Four Tasks of Mourning
      - Describe and discuss the Four Tasks of Mourning as identified in this chapter.

8. Patient-Centered Goals at End of Life
      - Select at least two patient-centered goals of care at the end of life and discuss how you would address these issues.

9. Key Communication Interventions
      - Identify key communication interventions that support patient-centered goals of care.

10. Support for Grieving Caregivers
        - Explain the interventions for helping grieving caregivers in the following areas:
            - a. Helping bereaved caregivers come to terms with their feelings
            - b. Helping people say goodbye
            - c. Helping families maintain “hope”
            - d. Establishing therapeutic presence

11. Self-Care for Nurses
        - Describe the importance of self-care interventions for nurses.

Key Terms and Concepts

• Acute grief

• Ambiguous loss

• Anticipatory grief

• Bereaved

• Bereavement

• Burnout

• Caring presence

• Compassion

• Compassion fatigue

• Complicated grief

• Disenfranchised grief

• End-of-life conversations

• FICA

• Four Gifts

• Four Tasks of Mourning

• Grief

• Grief work

• Hospice care

• Loss

• Meaning reconstruction

• Mourning

• Palliative care

• Uncomplicated grief

Dying in America

• The Dying in America Report includes several recommendations:
     - More and better comprehensive care is needed for people with advanced serious illness.
     - Improved client-patient communication that includes advance care planning.
     - Professional education and ongoing development in palliative care.
     - Improved financing to provide quality end-of-life care.
     - Public education and engagement about advance care planning and informed choices.

Palliative Care vs. Hospice Care

• Palliative Care
     - Collaborative and coordinated care by an interdisciplinary team.
     - Services available concurrently or independent of curative or life-prolonging care.
     - Support of patient and family hope for peace and dignity until death.
     - Can be delivered in any care setting.

• Hospice Care
     - Focused on care at the end of life.
     - Part of the palliative care trajectory.
     - Provides compassionate, holistic, and medically managed services.

Loss, Grief, Mourning, and Bereavement

• Loss: The experience of losing something important, often associated with feelings of grief.

• Grief: An individualized response to a loss that is perceived, real, or anticipated.
     - Types of grief include:
       - Uncomplicated (normal) grief
       - Acute grief
       - Anticipatory grief
       - Disenfranchised grief
       - Complicated grief
       - Ambiguous loss

• Mourning: The ways an individual outwardly expresses grief and manages it.

• Bereavement: The period of sadness following a significant loss through death.

Theoretical Frameworks

Erich Lindemann

• Coined the term “grief work” which represents the process of mourning.

Elizabeth Kübler-Ross

• Proposed phases of bereavement that occur in orderly sequences.
  

Grieving Process Phenomena

• Common phenomena experienced during the grieving process include:
     - Shock and disbelieve
     - Denial
     - Guilt
     - Anger
     - Somatic distress: Symptoms experienced in the body that reflect emotional distress, such as tightness in the throat, shortness of breath, and exhaustion.
     - Change in behavior: This can include restlessness and depression.
     - Reorganization of behavior: Focusing on new interests and relationships.
     - Preoccupation with image of the deceased: Frequent memories and thoughts about the deceased, often leading to emotional responses.

Typical Responses and Pathological Intensification During Grief

Table Summary

Assessment: Complicated Grief

• Acute grief can exacerbate medical and psychiatric issues.

• Key Indicators of Complicated Grief:
     - History of depression, substance abuse, or PTSD.
     - Guilt about issues not related to actions taken or not taken during the relationship.
     - Prolonged functional impairment.
     - Hallucinations beyond transient images of the deceased.

Nursing Diagnosis Related to Grieving

• Grieving

• Complicated Grieving

• Risk for Complicated Grieving

• Ineffective Coping

• Compromised Family Coping

• Disturbed Sleep Pattern

• Risk for Spiritual Distress

• Disturbed Thought Processes

• Chronic Sorrow

• Social Isolation

Planning and Implementation

1. Nurses frequently encounter individuals grieving a loss.

2. Grief can be due to losses other than death, such as loss of a limb or health.

3. Simple active listening can offer immense comfort.

4. Referrals may be necessary for support groups or therapy.

Interventions for Complicated Grief

• Psychotherapy: Recommended for those at risk of complicated grief.
     - Incorporates educational components to normalize feelings.
     - Encourages full emotion expression through methods like letter writing.

• Patient and Family Centered Goals of Care:
     - Communicative skills, assess/address spirituality using FICA (Faith, Importance, Community, Address).
     - Focus on advance care planning and interdisciplinary teamwork.

Helping Bereaved Caregivers

Understanding Feelings

• Acknowledge intense emotions:
     - Sorrow: “This must hurt terribly.”
     - Anger: “I hear anger in your voice. Most people feel this.”
     - Guilt: “Many feel guilt. What are your thoughts?”
     - Fear of Future: “It must be scary to go through this.”
     - Confusion: “This can be a confusing time.”

Assisting in Saying Goodbye

• Dr. Ira Byock's Four Gifts of Resolving Relationships:
     - Forgiveness: “I forgive you, please forgive me.”
     - Love: “I love you, and I know you love me.”
     - Gratitude: “Thank you, and I receive your thanks.”
     - Farewell: “We will have an enduring connection.”

Maintaining Hope

• Encourage hope while acknowledging reality:
     - Hope that loved ones are valued and that caregivers are doing their best.

Establishing Therapeutic Presence

• The presence of caregivers is crucial; highlights the importance of being there for those grieving.

• Effective presence involves accepting the reality of suffering and mourning, making individuals feel valued.

Guidelines for Dealing with Loss

• Take the time to grieve.

• Express feelings.

• Establish daily structure.

• Care for oneself despite difficulties.

• Be aware of unexpected emotional responses.

• Utilize rituals when appropriate.

• Seek professional help if not improving.

Self-Care and Support for Nurses

• Importance of identifying personal grief experiences and potential for desensitization among healthcare providers.

• Evaluation of care goals and outcomes to ensure effective nursing practice.

Audience Response Questions

1. Question: Grief is best described as:
       - 1. Normal response to a significant loss.
       - 2. Mild to moderately severe mood disorder.
       - 3. Display of feelings associated with death.
       - 4. Denial of the reality of loss.
      Answer: 1. Normal response to a significant loss.

2. Question: Indicates successfully mourning a loss:
       - 1. “She was strong after her husband died.”
       - 2. “She was a wreck when her sister died. It took her about a year before she resumed activities.”
       - 3. “He talks about his mother as if she is alive.”
       - 4. “He never talked about his wife; just moved on.”
      Answer: 2. “She was a wreck when her sister died. It took her about a year before she resumed activities.”