Formal training in leading family meetings is rare. Consider a proactive versus a reactive family meeting. Planned, prophylactic family meetings have been demonstrated to improve family satisfaction in numerous studies.
Why? Studies examining the role of family meetings in end of life or critical care demonstrate:
Physicians tend to avoid discussing emotional and quality of life issues in favor of focusing on medical details of care.
Although meetings that address sensitive topics have been measured and found to last no longer than family meetings where these topics aren’t addressed, physicians tend to anticipate that these discussions will take “too much time.”
Active listening with validation is key. Physicians tend to dominate, both in terms of percentage of the meeting spent speaking as well as dictating the topics that are addressed.Listen.
Supportive physician behaviors are positively correlated with family satisfaction.
Who? Consider the participants. Ask the family if they’d like relatives, a spiritual advisor or hospital chaplain, a patient advocate, or their loved one’s primary care provider to be present. From the care team’s perspective, ideally, social work, nursing and nursing assistants, and any consultants may be present.
Where? Locate a quiet, comfortable, and private space. Bring tissues, and try and have the staff sit closely and intermingle with family members so that the room is not divided.
Prepare the care team: A brief staff pre-conference is helpful to ensure the care team has clear, unified perceptions and goals based on a shared understanding of the patient’s medical condition. Clarify the patient’s condition and prognosis and plan to convey a cohesive message to the family. Ensure that the care team is emotionally prepared and ready to begin.
Starting the Conversation
Introductions: Give everyone a voice. Have everyone present introduce themselves and their relationship to the patient or role on the treatment team. Explain the meeting’s purpose and convey concern for the patient and family. Use empathetic statements, provide validation, and invite questions.
Warning shot: Include a “warning shot” that difficult subjects will be broached. For example:
“We have some difficult news to discuss…”
“Your mom is not doing well, and we’d like to make sure that you have all the information and support you need to make decisions about her care…”
Setting the agenda: It is best NOT to communicate the team’s desired outcome at this point. Invite family discussion rather than ending the introduction with a recommendation for DNR status or hospice care. Invite the family to set the agenda and ask about family dynamics in terms of decision making. For example:
“Is there a primary contact person we should go to first?”
“Are there any important family members missing today?”
“Has Mrs. X indicated that she’d like someone specifically to make decisions on her behalf?”
Structuring and Guiding the Meeting
Assess the family’s understanding of their loved ones’ condition: Listen to the family and observe how family members are responding. Take note of the how the family members interact with each other and note evidence of conflict between the family and care team. Encourage the family to elaborate by providing validation and non-verbal cues such as nodding of the head and making eye contact. Avoid interrupting to correct or list facts and allow the family to express their concerns.
Try to understand what the family prefers for communication from the team. Examples of questions to ask include:
“Do you prefer to have all the facts and details up front, or do you prefer to have a broader picture first and then a chance to ask questions about things that are important to you?”
“How would you like updates communicated to you? Is there one person we should contact who can let everyone else know, or should we gather all together?”
Provide Information: Educate & Summarize: Express the facts of the situation to the family and clarify uncertainties or misinformation. Keep your information as brief as possible to allow time for the family to process and respond. Don’t use “doctor talk,” and keep in mind average health literacy levels. Describe the benefits and burdens of treatment options, and if the patient is dying, be sure to state this clearly and use the words “death” or “dying” specifically. Check for family understanding periodically throughout your summary.
“I know we’ve just given you a lot of information. Could you summarize for me what your understanding of the situation is so that I can be sure I’ve explained it well?”
Ask the family what they believe their loved one is feeling/experiencing: Do they think that their loved one is suffering or not? It is helpful to have the nursing staff provide their perspective as well.
Explore the patient’s wishes: Guide the family in exploring what they believe the patient would want at this point, if could they express their desires (the concept of substituted judgement). Be clear that you are not asking the family to make the decision; rather, they are going to use their expertise about their loved one to determine what their loved one might want in this situation. Remind them that it is less about specific decisions but about the goals and values of the patient. Example questions and statements to use include:
“What would your mom want if she were able to share in these decisions?”
“You know your mother better than we ever could, and what we need from you is to know what she would want if she could speak for herself. This may not end up being what you would do, or what you want to do for her, but we are asking you, who know her and love her so well, to help us understand what she would want.”
Provide team recommendations: Finally, express the team’s recommendations sensitively and clearly, giving justification drawing on the family’s own language and descriptions and the medical condition as you understand it.
Recognize Conflict: The first step in navigating conflict is to recognize and understand it. Conflict can arise among the family or the care team, from gaps in the family’s information about their loved ones’ condition, previous family difficulties with the healthcare system, or difficulty navigating the turbulent emotions, among other reasons.
Drs. Timothy Quill and Forest Lang explain, “The most common pitfalls in establishing plans of care for patients who lack decision-making capacity include:
failure to reach a shared appreciation of the patient’s condition and prognosis
failure to apply the principle of substituted judgment
offering the choice between care and no care, rather than offering the choice between prolonging life and quality of life
too literal an interpretation of an isolated, out-of-context, patient statement made earlier in life
failure to address the full range of end-of-life decisions from do-not-resuscitate orders to exclusive palliative care.”
A common conflict can arise with the family who says to “do everything” or describes the patient as “a fighter.” It is best to align with this attitude and reframe, “yes, she’s a fighter, and we have all been fighting for her and doing everything reasonable that can be done. But now, the fight has changed, and our treatments are not helping but are causing her suffering.”
Ensure that the family understands that limiting life supports is not limiting caring. Emphasize that often the most loving choice is the hardest one. Ensure that families know that the question is not whether to care or withdraw care, but whether to focus on life-prolonging measures or to focus on comfort. Reassure families that they are making compassionate and loving choices.
Provide time, whenever possible. Families may not be ready in the span of one meeting to make decisions regarding discontinuing life-prolonging care. Pressing families for immediate answers may lead to defensiveness and damaged trust. Discussing scarcity of resources is also unwise. If families wish to continue medical treatments or measures that the care team feels are not beneficial to the patient, a limited continuation of current life-prolonging measures may be offered, with an endpoint set at which to revisit the discussion. Consulting counseling, ethics, the hospital chaplain, or palliative care may also be available as resources.
How to End
Care for the family: Even if the care team and the family do not come to an agreement on a course of action, validate family choices or efforts whenever possible. For example:
“I know that you love your mother and you are doing what you feel is best for her. We will be here to continue to support you.”
“It is clear that you all love Mr. X very much. Please know that we will continue to work with you to give him the best care and ensure that we respect his wishes.”
Caring for the family does not end at the conclusion of the family meeting: Ensure that the care team remains available for the family. In hospice care, one-year follow up is standard of care. More and more hospitals are arranging for the social work team to follow up with grieving families after their loved one dies.
Care for the team: Meet with the care team after the family meeting to discuss what went well, what the team might do differently next time, and review the team’s perception of how the family is coping. Describe the meeting succinctly in the patient’s chart to communicate the outcome of the meeting to others providing care for the patient.