Talking to the Family

1. Talking to the Family HERTZBERG PALLIATIVE CARE INSTITUTE Jane Morris, RN, MS Daniel Fischberg, MD, PhD Hertzberg Palliative Care Institute Mount Sinai School of Medicine, New York

2. Mr. A. 55 year old Italian-American, married, father of four, anticoagulated for chronic atrial fibrillation, admitted 3 days ago with a massive subdural hematoma and partial herniation. Following hematoma evacuation, the patient has minimal brain stem function (triggers the ventilator). The ICU team calls to request that Palliative Care meet with the family to discuss the goals of care.

3. Family meetings: Why? • Inform/Answer questions • Resolve conflict • Establish surrogate decision maker • Develop treatment goals • Develop plan of care

4. Family meetings: How? • Setting • Purpose • Introductions • Telling the story • Answering questions/Responding to emotion • Establishing goals of care • Developing plan of care • Summarize and plan for follow-up

5. Setting • First review medical history/examine patient • Select participants • relevant family members/friends, surrogates • primary treatment team, relevant specialists • social work, chaplaincy • Arrange the physical environment • privacy, comfort • circular seating

6. Purpose • Setting the agenda for the meeting • Helps family members anticipate what to expect • Update • Answer questions • Develop plan of care • Develop notion of collaboration in development of care plan • Some provide “ground rules”

7. Introductions • Sets appropriate tone of respect to family • Allows team time necessary to meet a potentially large number of people • Clinical pearl: drawing a seating chart helps the chronologically challenged clinician! • Facilitates communication • Distribute business cards • Builds trust, credibility, accountability, accessibility

8. Telling the story • Allows team to gauge family • Understanding/perception • Expectation • Psychosocial context • Emotional state • Always easier to “ask before you tell”

9. Answering questions/responding to emotions • Use appropriate language (no TLA’s!*) • Don’t rush this part • Appropriate use of • Silence • Empathic response • Clinical pearl-Keep facial tissues handy. *three letter abbreviations

10. Establishing goals of care • Often the team’s agenda… • Based whenever possible on some form of advanced directive • Typically involves identification of appropriate surrogate decision-maker(s) • Need to be familiar with both state laws regarding medical decision-making and institutional policy

11. Establishing goals of care, cont’d • Determine the level of evidence (e.g. “clear and convincing” vs “substituted judgment” decisions vs “best interests” decisions) • Consider asking, “If your mother were able to get out of that bed and sit here with us, listening to what the doctors have said so far, what might she say?” • Often successfully refocuses attention on patient’s values/beliefs rather than family wishes

12. Developing the plan of care • The plan follows from the plan • Clinicians should take the lead in constructing the plan, based on the goals developed earlier • Avoids “a la carte” medicine • Appropriate assumption of clinical responsibility • Check for understanding/agreement

13. Summary and follow-up • Review decisions • Often unresolved questions remain • Develop time frame and manner for resolution and follow-up as promised • Establish mechanisms for further, regular communication

14. Pearls and pitfalls • Presence of relevant specialists can be critical to effective meetings (and permits palliative care clinician role of moderator) • Families will want to know: what happened, what is happening now, and what will happen next? • Comfort in the face of strong emotion (the calm in the eye of the storm)

15. Pearls and pitfalls, cont’d • Avoid getting bogged down in details • Instead, establish the overall goals the person would have given the situation

16. Pearls and pitfalls, cont’d • Potentially disruptive family members • Personality disordered • “Complex” family dynamics • Maladaptive coping mechanisms • Mentally ill, chemically-dependent • Health care workers