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