1. TNEEL-NE Inge B. Corless, PhD, RN, FAAN

2. Slide 2 Well-being: Psychosocial Care TNEEL-NE 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. Slide 3 Well-being: Psychosocial Care TNEEL-NE 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. Slide 4 Well-being: Psychosocial Care TNEEL-NE 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 1 1 2 2 2 2 3 3 4 4 4 4 Stressors Maladaptive Functioning Psychological Effects Neuroendocrinological Effects Immunological Effects Faster Progression in HIV Infection

5. Slide 5 Well-being: Psychosocial Care TNEEL-NE Psychological Effects The following have an impact on psychological well-being: –Anxiety/fear –Depression –Loneliness –Suffering –Dependency/lack of independence –Decreased self-esteem/ self-respect –Guilt/anger –Adjustment to the disease/prognosis –Satisfaction with care –Despair –Acceptance of Loss –Denial/Acceptance

6. Slide 6 Well-being: Psychosocial Care TNEEL-NE 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. Slide 7 Well-being: Psychosocial Care TNEEL-NE 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. Slide 8 Well-being: Psychosocial Care TNEEL-NE 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 NO HURT HURTS LITTLE BIT HURTS LITTLE MORE HURTS EVEN MORE HURTS WHOLE LOT HURTS WORST

9. Slide 9 Well-being: Psychosocial Care TNEEL-NE 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. Slide 10 Well-being: Psychosocial Care TNEEL-NE 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. Slide 11 Well-being: Psychosocial Care TNEEL-NE 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. Slide 12 Well-being: Psychosocial Care TNEEL-NE Case Example: Mrs. Gregory Mrs. Gregory Mrs. Gregory and her daughter, Gloria, react to the bad news of her diagnosis. 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.

13. Slide 13 Well-being: Psychosocial Care TNEEL-NE 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. Slide 14 Well-being: Psychosocial Care TNEEL-NE 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. Slide 15 Well-being: Psychosocial Care TNEEL-NE 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. Slide 16 Well-being: Psychosocial Care TNEEL-NE 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. Slide 17 Well-being: Psychosocial Care TNEEL-NE 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.