What are family meetings?

Family meetings can help you make sure that everyone understands the situation. Caring for someone with cancer is not a one-person job. You need others to pitch in. Even if they don’t give direct care, the time you spend caregiving may affect them. Meetings are a way to keep everyone informed and involved. Family meetings can be a good place to problem-solve and share opinions. Sometimes, doctors and nurses hold meetings to help the family understand the diagnosis and treatment. Include those who will be involved in caregiving.

Not all family meetings go smoothly. Feelings about the person’s cancer diagnosis and future, bad past relationships, and poor communication can get in the way. But the results can be positive. It may be valuable to discuss the roles each will assume in the patient’s care.

When should we have a family meeting?

You should have a family meeting when:

• Your loved one is diagnosed.
• You need to make decisions.
• When there are transitions from one phase of care to another
• You need to solve problems.
• The health of the patient changes.
• There is a need to change the setting of care (home, nursing home, hospice)
• When a caregiver’s roles/responsibilities change (e.g., a new caregiver is added, or a caregiver is no longer able to assume their responsibilities).

Some families meet on a regular basis to share news, deal with issues as they come up, make decisions, and talk about their feelings and needs. These meetings can also serve as a sense of support for each other.

Who should be at our family meetings?

Invite everyone who will be caring for the person with cancer, including family members, close friends, neighbors, and paid caregivers. Consider including family and friends who live outside the area. There are ways for them to help from a distance.

A big decision is whether your loved one should be at every family meeting. On one hand, the patient needs to voice his or her ideas and concerns. On the other hand, family members and friends may not be as frank around him or her. If you don’t include the person being cared for, sit down with them before so that you can properly advocate for their needs/desires. Sit down with them after the meeting so that they stay in the loop.

How do we make our family meetings work?

Here are some tips:

1. Review the tips on talking with family & friends about caregiving. Consider sharing these with everyone before the meeting.
2. Hold the family meeting in a neutral and comfortable place. This could be someone's home, office, a room at the doctor’s, the phone, FaceTime, Skype, or Zoom.
3. Pick a time and place when you will not be interrupted. Ask people to turn off their cell phones or put them on vibrate. If small children will be present, have a sitter watch them in a different part of the house.
4. Consider having an “outsider” moderate the meeting. A social worker, pastor, or nurse may be more able to keep the meeting on track.
5. Prepare an agenda and give it out before the meeting. Put the most important items first. For example, you may want to discuss:
   
   - Patient’s health status (especially any changes) or latest report
   - Goals of treatment/care
   - Daily caregiving needs
   - Financial issues
   - Decision-making / problem-solving
   - Individual roles
   - Fears / Stressors / Barriers
   - Primary caregiver support needs
   - Patient concerns or wishes
    
6. Focus on the immediate problems and the care of the patient.
7. Put a time limit on each item. For example, "We will talk for 20 minutes about money and then we need to move on to helping with housework." Ask someone to keep track of the time.
8. Give each member of the group space and time to talk. If they do not want to talk, that is okay.
9. Prepare for “difficult” people. If you think some of the attendees might bring personal issues to the meeting, talk to them in advance. Define the limit that this meeting has a preset agenda and certain topics are off limits. If you have an outside moderator leading the meeting, give them a heads up.
10. Prepare for disagreements. The family may not agree on some things. If you can’t reach an agreement, that is okay. Decide to try it one way for a month and set a time to talk again about how things are working. Keep an open mind, compromise, and be flexible.
11. Have someone take notes or make a recording of the meeting. The note-taker should write down decisions and assignments. Give everyone a copy of the notes after the meeting.
12. Make sure to assign people tasks they can do well. For example, ask your accountant to review bills and expenses.
13. Remember that you can’t solve everything in one meeting. At the end of the family meeting, set up a time and a place for the next one.
14. Be sure there is a summary of the meeting and that everyone understands. Family meetings require communication skills.
15. Give emotional support during the meeting. Provide the information that individuals need to be of assistance
16. Open questions should be asked, and constructive commenting should occur.
17. Be diligent about following up. When you meet again, start by reviewing the notes and decisions from the previous meeting.

References

• Littell, R.D., Kumar, A., Einstein, M.H., Karam, A., & Bevis, K. (2019). Advanced communication: a critical component of high quality gynecologic cancer care: A Society of Gynecologic Oncology evidence based review and guide. Gynecologic oncology, 155(1), 161-169.
• Ghoshal, A., Salins, N., Damani, A., Chowdhury, J., Chitre, A., Muckaden, M.A., ... & Badwe, R. (2019). To tell or not to tell: Exploring the preferences and attitudes of patients and family caregivers on disclosure of a cancer-related diagnosis and prognosis. Journal of global oncology, 5, 1-12.
• Jung, M.Y., & Matthews, A.K. (2021). A systematic review of clinical interventions facilitating end-of-life communication between patients and family caregivers. American Journal of Hospice and Palliative Medicine®, 38(2), 180-190.