Developed by Michael R. Panicola, Ph.D.
Vice President for Corporate Ethics
SSM Health System
St. Louis
General Thoughts/Tips
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In most cases you are seeing this patient/family at their worst. This is new for them and there will be a lot of emotion surrounding this conversation. Just because the emotion is not verbalized or demonstrated does not mean it is not there.
- Never underestimate the impact of family history. It is almost always present and seldom spoken. The participants may not even be consciously aware of the history they bring to the situation.
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The family will seldom remember what you have said but they will always remember the way you made them feel. Be gentle and respectful while guiding them to decisions that promote the best interests of the patient.
- Continue to keep in contact with the family or decision maker after the care conference. New questions will surface and they may need reassurance that they made the correct decision.
- This can be difficult for you as well so be gentle with yourself if it does not go perfectly. Learn from experience and from each other.
Cultural Considerations
Most cultures/families have certain beliefs, rituals, and/or practices related to health care and decision making. These vary from how much information the patient wants to receive to who makes health care decisions for the patient, from how illness is perceived (personal fault or natural consequence) to how pain can be treated, from how far one must go to preserve life to how the body must be treated after death, and so on. Facilitators should have at least a general understanding of the patient's culture/beliefs and be attentive to them when conducting care conferences. The following resources may be of help.
- Culture & Nursing Care: A Pocket Guide, Pamela A. Minarik ($59.95)
- Mosby's Pocket Guide to Cultural Health Assessment, 4th ed., Carolyn D'Avanzo ($28.15)
- Guide to Culturally Competent Health Care, Larry D. Purnell ($21.83)
- Caring for Patients from Different Cultures, 4th ed., Geri-Ann Galanti ($14.43)
Decision Making
Culture specific:
- In some cultures health care decisions are made by the oldest male member of the family. In others, decisions are made by the spouse or adult children. Before you invite the family to participate in the care conference, find out who makes decisions and who should be included.
- When talking about cultural differences, think more broadly than easily differentiated cultures. For example, a Caucasian, St. Louis-born German family may appear much more stoic and detached than a Caucasian, St. Louis-born Italian family that may appear more demonstrative or emotional.
- Some cultures such as African American, Italian, Greek, and others expect that large groups of family members will be in attendance during medical crises. This is how they show love and support for the patient and for the patient's closest family members.
- When in doubt, ask the family if there are any specific beliefs, rituals, and/or practices they observe when confronting illness in a loved one.
Family specific:
- If advance directives do not identify the decision maker, ask the family to determine who will represent the family in decision making. If there are "differing factions" within the family, be sure to have a representative of each faction present at the care conference so all views are represented.
- Families have histories and many times the impact of that history comes to bear in a medical crisis. If you witness behavior that seems inconsistent with your experience or expectations, you may want to consider that some family history is at work.
Communication/Facilitation
In the table below are some common issues that arise prior to and during the care conference followed by optional phrases that the facilitator can use to address the issue.
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Context
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Issue
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Optional Phrases
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Pre-Conference
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a. Invitation to the care conference
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a1. "Can you or a member of your family be available Tuesday at 9:00 AM to discuss the ongoing care of your mother?"
a2. "It is time for us to make some decisions related to your mother's care. We would like 1 or 2 of your family members to join the care team tomorrow at 8:00 AM so we can decide how best to proceed. Will that time work for you?"
a3. "Your mother is not responding to the treatments as we had hoped. Tomorrow at 10:00 AM we will need to meet with the care team to decide our next steps. Can you be available to meet with us at that time?"
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b. Limiting the number of family members participating in the care conference
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b1. "In order for us to make the best use of our time together we ask that you and your family please select 1 or 2 members who will be representatives and decision makers for your family."
b2. "In preparation for our care conference tomorrow your family may want to talk about any wishes your mother may have expressed in the past about how she would want to be treated in this situation. Then you can select 1 or 2 members of your family to represent those wishes at the care conference tomorrow."
b3. "We would like to be able to accommodate all of you at the care conference tomorrow. Given the size of the room and the amount of time we have, we ask that you please select 1 or 2 family members to represent the family."
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Context
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Issue
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Optional Phrases
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Conference
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a. Setting the goal and timeframe for the care conference
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a1. "Thank you for coming this morning. I know that this is a difficult time for you and your family. Please allow me to tell you the purpose of this care conference … Members of your mother's care team are here to tell us about your mother's current condition and her outlook for the future. Based on that information, we will ask for your input on how we should go forward with regard to your mother's care. The care team and the room are available to us for 30 minutes so we will need to stay focused."
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b. If family member is straying from topic
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b1. "Thank you for your input. Is that something that will have immediate impact on our decision at-hand or should we come back to that if we have time at the end?"
- The goal is respectfully to keep the person focused on the immediate goal of the care conference.
b2. "I'm a little confused. Please help me understand how that impacts the decision at-hand."
b3. "Mary, thank you for your input. Now let's hear from some of your other family members."
b4. "Mary, I appreciate your input and we still need to hear the thoughts of the rest of the group."
- Use the word "and" and not "but" because you want to hear that person's thoughts and you want to hear the thoughts of others.
b5. "Thanks, Mary. In order to make the best decision we need to hear the thoughts of everyone."
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c. If group is having difficulty making the decision in the allotted time
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c1. "Some of you need to leave in 10 minutes. Is there any other information we need to discuss before making a decision?"
c2. "It appears as though we have the necessary information to make a decision now so let's move on to that."
c3. "Are there any family or cultural considerations that we need to attend to in making this decision?"
- Delays in reaching decisions may be due to cultural/family aspects that family members are reluctant to mention.
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Context
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Issue
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Optional Phrases
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Conference (continued)
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d. Assessing level of understanding among family members
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d1. "This is an important decision and I want to make sure that we are all on the same page regarding what we decided before we leave this room. Mary, please tell me what you understand we decided today."
- This is an important step. Do not simply ask the family if they understand or if they have any questions because they are likely to say "yes" to the former and "no" to the latter. Rather, have the family articulate in their own words what they believe was decided. Resolve any inaccuracies or disputes before proceeding.
d2. "Later you will have time to think about what we have discussed here and I will be sure to follow up with you later today or tomorrow. Before we leave, though, please tell me what you have heard in this discussion and what our plans are for moving forward."
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e. Closing/adjournment
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e1. "Thank you so much for participating in this care conference. This will help us better care for your mother and honor her wishes. If you have any questions at all, please feel free to call me or talk with the physician (provide the family with you business card)."
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