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

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

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

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

“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.

“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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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

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.

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)

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

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

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)

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

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

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

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

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

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