Vegetative and Minimally Conscious Patients: Discussing Prognosis with Family Members

1. Vegetative and Minimally Conscious Patients:Discussing Prognosis with Family Members Claire McGrath, Ph.D. Moss Rehabilitation Research Institute MossRehab Hospital Albert Einstein Healthcare Network Elkins Park, PA, USA

2. Acknowledgements • Direction from John Whyte, MD, Ph.D., Director of Responsiveness Program at MossRehab • Collaborators in family care: Eileen Fitzpatrick-DeSalme, Ph.D., Lynn Grahme, MSW, Lorraine Lewis, MSW, Larry Marr, MSW, and Sooja Cho, MD

3. Discussion of Prognosis • In U.S.A., prognosis generally discussed prior to admission • Timing is important: • limit patient-specific information in the initial meeting • Develop credibility with family • Acquire knowledge about family functioning • discuss prior to discharge plans • Avoid perception that prognosis determines discharge

4. Discussion of Prognosis • Prognosis is often the first question family members ask • Prognosis is often the last issue family members are prepared to “hear” or accept • Discussion will influence relationship between treatment team and family

5. “Good” vs. “Poor” Prognosis • Definition of “good” and “poor” may differ between treatment team and family members • Treatment team considers good prognosis: • Signs of consciousness • Ability to communicate • Ability to participate in self-care, eating, standing, etc.

6. “Good” vs. “Poor” Prognosis • Family consider good prognosis: • Recovery to “old self” • Eventual independence in self-care, ambulation • Eventual return to pre-morbid roles • Eventual return to pre-morbid personality • These beliefs can remain regardless of rehabilitation course or education from team

7. Discussion of Prognosis • “Successful” discussion with family = ability to maintain working relationships to create a safe discharge plan • “Success” does not depend on family members agreeing with prognosis

8. How to prepare for discussion • Assessment of family functioning prior to discussion • Psychological functioning of family dictates • When prognosis is first discussed • Emphasis on “education/information” vs. “support” • Frequency of meetings to help family process • Neuropsychologist should have understanding of grief counseling, psychological factors of grief

9. Discussion of Prognosis:3 Central Issues • What information is available to share with the family • What is the purpose for discussing prognosis • What is the psychological state of the family

10. Prognosis: What information is available? • Type of injury • Time since injury • Patient specific factors • Age • Pre-morbid health • Medical complications • Note: Credibility comes with time

11. What information is available? • The treatment team should inform discussion of prognosis • Attending physician should participate in the discussion about prognosis • Discussion should include variability in recovery following TBI

12. Prognosis: Purpose of Family Discussion • Information guides treatment/discharge • Addresses “illogical” or potentially harmful family decisions • e.g., family not preparing for 24-hour supervision, family making expensive purchase for patient (e.g., vacation) • Family is requesting the information

13. Prognosis: Psychological State of Family • Discussion of prognosis should be guided by neuropsychologist, social worker • Discussion should be informed by insight regarding family characteristics/dynamics to increase likelihood of a productive, supportive conversation • Discussion should be informed by understanding of grieving

14. Grief: The Psychological State of the Family • Grief is characterized by varied, confusing, conflicting emotional states • 5 stages (Kubler-Ross) • Denial • Anger • Bargaining • Depression • Acceptance

15. Grief: The Psychological State of the Family • There is no pre-determined grief process • There is no single “healthy” grief process • Emotions vary throughout hospitalization • Grief and emotions feel out of control

16. Grief: Psychological State of the Family • Grief complicated by the ambiguity of prognosis and recovery • Grief is complicated by hope • Grief is complicated by the fact that the patient is still living

17. Psychological State of Family • Each family member is grieving, their grieving processes may conflict • Family conflict can interfere with rehabilitation • Identify grieving processes by assessing • Emotional expressions of family members • Communication patterns in family • Power dynamics, hierarchy

18. Psychological State of Family • Unique characteristics of family members: • Are some members more “realistic” than others • Is there a family “leader” with considerable influence over family • Are substance abuse/mental health issues present in family members • Are family members experiencing multiple stressors (e.g., financial, work, transportation, child care, health issues)

19. Psychological State of Family • Family characteristics should direct communication • Are they “emotion-focused” or do they respond to education • Are they the “experts” on their family member • Providing information that is inconsistent with family processing (e.g., education to family who process emotional information) can lead to family estrangement from treatment team

20. Psychological State of Family • Multiple stressors, mental health issues influence cognitive functioning of family members • Utilize memory strategies – write information for family, repeat information • Structure conversation in distraction free environment • Identify family members who need additional support to express emotions

21. Psychological State of Family • Unique characteristics of family/patient relationship: • Is the family relationship positive/supportive • Is the patient estranged from the family • Does the patient have a longstanding history of interfering with family functioning • Was the patient the primary financial provider, child care provider, etc.

22. Psychological State of Family • Understanding the family/patient relationship provides insight into • Quality of loss • Unresolved feelings • Long-term concerns (does the family resent caring for patient, does the family have emotional/financial resources to care for patient)

23. Family/Treatment Team Characteristics • Is the family pleased with patient care • Does the family trust the treatment team • Are the family’s expectations “realistic” • Does the family fear poor prognosis will impact patient care • Does the family fear treatment team is “giving up” on patient

24. Family/Treatment Team Characteristics • Family’s experience with acute care hospitalization • Acute care medical team told them the patient would not survive, be a “vegetable”, etc. • Family observed patient neglect/perceived neglect • Does family differentiate between current treatment team and acute care

25. Family/Treatment Team Characteristics • Differentiate between family concerns that can and cannot be addressed • e.g., general mistrust vs. problems with care: delayed CT scans, rude staff, difficulty managing agitation etc. • Avoid wording that triggers negative past experiences (e.g., what did acute care doctors say that was so problematic)

26. How to Assist Families • Remain supportive, even when encountering hostility • Maintain professional emotional distance • Do not imply that changes can occur that are not possible • Decrease family confusion/instability: • Provide consistent feedback, repeat information as frequently as needed • Ensure consistency among treatment team members • Do not accept responsibility for poor prognosis

27. How to Assist Families • Provide opportunities for family members to express emotions • Allow time in family meetings for processing, discussion, questions, emotions • Co-treat with therapists and family members to help family contain emotional reactions

28. How to Assist Families • Provide referrals for follow-up services after discharge • Educational material • Support groups • Psychological services (individual counseling, family counseling)

29. How to Assist Families • Provide support to treatment team to avoid conflicts with families • Educate team on family dynamics • Prepare treatment team by predicting family reactions, explaining psychological underpinnings of family reactions • Encourage team members to express feelings outside of therapy sessions

30. How to Maintain Professional Excellence • Allow for de-briefing following family meetings as discussion of prognosis can be emotionally draining • Identify sources of support for yourself • Engage in ongoing education on TBI, grief counseling, family dynamics

31. To sum:Factors to consider when discussing prognosis with families • Why: purpose of discussion • When: is family ready? What types of information will be most helpful? Are there opportunities to continue the discussion? • Expected outcome of conversation and how that will impact rehabilitation