#16

Moderating an End-of-Life Family Conference

  • Bruce Ambuel PhD
  • David E Weissman MD

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Background   At some point during the course of a terminal illness, a meeting between health care professionals and the patient/family is usually necessary to review the disease course and develop end-of-life goals of care.   Learning the process steps of a Family Conference is an important skill for physicians, nurses and others who are in a position to help patients and families reach consensus on end-of-life planning. See Fast Facts # 222 on Preparing for the Family Meeting and #223 on The Family Meeting: Starting the Conversation.

Family Conference Process Steps

  1. Why are you meeting: Clarify conference goals of what you hope to accomplish?
  2. Where:  A room with comfort, privacy and circular seating.
  3. Who: Patient (if capable); legal decision maker/health care power of attorney; family members; social support; key health care professionals.
  4. Introduction and Relationship Building
    • Introduce self/others; review meeting goals and which decisions need to be made.
    • Establish ground rules: each person will have a chance to ask questions and express views; no interruptions; identify legal decision maker; and describe importance of supportive decision making.
    • If you are new to the patient/family, spend time seeking to know the “person”—ask about hobbies, family, what is important in her or his life, etc.
  5. Determine what the patient/family already knows.  Tell me your understanding of the current medical condition? Ask everyone in the room to speak.  Also ask about the past 1-6 months—what has changed in terms of functional decline, weight loss, etc.
  6. Review medical status
  • Review current status, prognosis and treatment options.
  • Ask each family member in turn if they have any questions about current status, plan & prognosis.
  • Defer discussion of decision making until the next step.
  • Respond to emotional reactions (See Fast Facts #29, 59, 224).

 7. Family Discussion with a Decisional Patient

  • Ask the patient What decision(s) are you considering?
  • Ask each family member Do you have questions or concerns about the treatment plan?  How can you support the patient?

 8. Family Discussion with a  Non-Decisional Patient

  • Ask each family member in turn What do you believe the patient would choose if the patient could speak for him or herself?
  • Ask each family member What do you think should be done?
  • Ask if the family would like you to leave room to let family discuss alone.
  • If there is consensus, go to 10; if no consensus, go to 9

 9. When there is no consensus: 

  • Re-state: What would the patient say if they could speak? Ask: Have you ever discussed with the patient what he or she would want in a situation like this?
  • If you, as a clinician, have a firm opinion about the best plan of care, recommend it simply and explicitly, and explain why.
  • Use time as ally: schedule a follow-up conference the next day.
  • Try further discussion: What values is your decision based upon?  How will the decision affect you and other family members?
  • Identify other resources: Minister/priest; other physicians; ethics committee.

 10. Wrap-up:

  • Summarize consensus, disagreements, decisions, & plan.
  • Caution against unexpected outcomes.
  • Identify family spokesperson for ongoing communication.
  • Document in the chart who was present, what decisions were made, follow-up plan.
  • Don’t turf discontinuation of treatment to nursing.
  • Continuity – Maintain contact with family and medical team.  Schedule follow-up meetings as needed.

See additional related Fast Facts: Delivering Bad News (#6, 11); Dealing with Anger (#59), Conflict Resolution (#183, 184, 225), Helping Surrogates Make Decisions (#226); End of Life Goal Setting (#227); .

References

  1. Ambuel, B. Conducting a family conference.  In: Weissman DE, Ambuel B, Hallenbeck J, eds. Improving End-of-Life Care: A resource guide for physician education. 3rd Ed.  Milwaukee, WI: The Medical College of Wisconsin; 2001.
  2. Quill TE.  Initiating end-of-life discussions with seriously ill patients. JAMA. 2000; 284: 2502-2507.
  3. Baile WF et al.  Discussing disease progression and end-of-life decisions.  Oncology. 1999; 13:1021-1028.
  4. Weissman DE. Decision making at a time of crisis near the end of life. JAMA. 2004; 292: 1738-1743.

Version History:  This Fast Fact was originally edited by David E Weissman MD.  2nd Edition published August 2005; 3rd Edition May 2015. Current version re-copy-edited May 2015.