Exploring Psychological Well-being in End-of-Life Care

1. Inge B. Corless, PhD, RN, FAAN

2. Introduction • Psychological factors are important facets of living and dying • Psychological factors may influence outcomes of physiological challenges • Regardless of their impact on survival, the presence or absence of psychological factors have an influence on quality of life

3. Assumptions • Psychosocial aspects of care are critical to enhancing a patient’s quality of care at the end of life Mr. Williams • Breaking bad news: patient and family centered approach

4. Related Terms • Stressor: “Events that have the capacity to induce emotional distress” • Stress: “The experience of emotional distress” • Nott’s model: How stress may accelerate the progression of HIV Disease Stressors 1 2 Maladaptive Functioning 2 Neuroendocrinological Effects 3 4 4 Psychological Effects Immunological Effects Faster Progression in HIV Infection

5. Psychological Effects • The following have an impact on psychological well-being: • Anxiety/fear • Depression • Loneliness • Suffering • Dependency/lack ofindependence • Decreased self-esteem/self-respect • Guilt/anger • Adjustment to thedisease/prognosis • Satisfaction with care • Despair • Acceptance of Loss • Denial/Acceptance

6. Psychological Effects: Uncertainty • Uncertainty: • Will vary depending on the phase of the illness trajectory • Course of illness falls into three phases • Acute adjustment (around diagnosis) • Period of chronic illness • Terminal phases (death is in sight) (Forstein)

7. ? Psychological Well-being • Psychological Well-being: (Ferrell, 1989): • Seeking a sense of control in the face of life-threatening illness. • To promote psychological well-being, ask these three questions (Scanlon, 1989): • “What do they worry about?” • “How do they cope?” • “How can nurses help?”

8. Case Example: Mr. Rosena • Mr. Rosena’s story and your connection: • He is told by you that his cancer is progressing. • You learn that Mr. Rosena is afraid of pain more than death. • You reassure him that you’re committed to relieving any pain • You assess him frequently for pain / Offer round-the-clock pain service • Positive result based on visit: • A major concern is alleviated for Mr. Rosena. Wong-Baker FACES Pain Rating Scale HURTS LITTLE BIT HURTS LITTLE MORE HURTS EVEN MORE HURTS WHOLE LOT HURTS WORST NO HURT

9. What Do Patients Worry About? • According to Scanlon patients worry about: • Further debilitation and dependency • Pain and suffering • Consequences for dependents and arranging affairs • An uncertain future • Lingering • Dying alone • Loss of control • Changing relationships • Existential concerns • Change in mental functioning • Afterlife

10. Coping with Far-Advanced Disease • Approaches to coping can be adaptive or maladaptive. • Responses frequently observed include: • Denial • Fear • Anxiety • Depression • Withdrawal • Acceptance • Resignation • Anger Mrs. Gregory • Mrs. Gregory: “I’ll sign this Power of Attorney thing, but then I won’t discuss it any more.”

11. Denial • Denial can be beneficial in the short term if patient sustains integrity and personal freedom • Negative aspect to denial: • May interfere with the terminally ill person getting his or her affairs in order. • Under such circumstances, it will be useful to work with the patient along these lines: • “What if you were not going to recover, what would you need to do?”

12. Case Example: Mrs. Gregory • Mrs. Gregory is a 62-year-old woman who has been a patient for many years at the office where you work as a nurse. The past few months, she has been complaining of increasing upper abdominal pain and weight loss. Mrs. Gregory • Mrs. Gregory and her daughter, Gloria, react to the bad news of her diagnosis.

13. Fear & Anxiety • Fear: The response to a perceived danger. • Anxiety: A non-specific response. • Other Aspects: • Terminally ill persons may experience both of these responses. • Treat both fear and anxiety by exploring concerns of the patient. • A major concern: Being in pain without appropriate medication (fear of suffering more than death) • Children fear being alone, as well as pain. Children blame themselves and feel guilty for disruption. • Health care provider should meet with the patient, family, and other team members to discuss the plan of care.

14. Depression & Withdrawal • Depression is the most frequently observed symptom in the terminally ill • Observed in 77% of persons with far-advanced cancer • Suggested questions to assess depression: • “Can you describe your mood for me?” • “How long have you felt this way?” • “What is the feeling of depression like for you?” • “Have you noticed changes in your level of interest in normal activities?” • “How would you rate your feeling of depression on a 1-to-10 scale?” • Suggested questions to ask children: • Are you lonesome? • What makes you feel sad? (Isaacs, 1998)

15. Acceptance, Resignation & Transcendence • Acceptance: • “Acknowledging the inevitable finality of human life, though not necessarily liking it. For dying patients it is a resignation with a quality of sadness.” • The polar extremes of acceptance: Resignation and transcendence: • Resignation: • The individual experiences a sense of hopelessness to a situation that cannot be changed. • Transcendence: • Indicates acknowledging the situation, but rising above it to achieve an integration on a higher level. Transcendence integrates the psychosocial with the spiritual aspects for the terminally ill person. (Scanlon, 1989)

16. Anger • Anger: • “Anger is a healthy and understandable response to numerous and immeasurable losses: the loss of a future, unfulfilled promises, shattered dreams, and ended relationships.” • Anger is healthy • Expressing anger may be difficult for family members and professional caregivers to accept. • Reason for anger must be clear to family and caregivers • Failure to convey reasons for anger isolates the terminally ill. • A positive nursing response: Demonstrate respect and empathy.

17. Summary of Psychological Care • “Psychological care is analytic in nature.” (Grey) • The purpose of psychological care: • To help the patient attain a greater depth of understanding of him or herself and his or her situation. • Listening and probing: • Understanding the patient’s world as she or he perceives it. • Enables the nurse to explore possibilities that are in keeping with the patient’s view of the world (even with children as young as 3 years old). • Presence • Bearing witness is helpful to the patient and family as they traverse this difficult time in their lives. It is a role that is intrinsic to nursing.