An illness like cancer affects not only the patient but also their spouse/caregiver, children, family members and close friends. Everyone has questions, concerns, and fears. A family care conference is an ideal way to help everyone learn exactly what the patient’s health status is, what the patient needs from family and friends.
Often, the desire to get the patient and their support team on the same page prompts a patient or caregiver to call a family meeting, or family care conference. It’s a great way to lay out all of the facts as well as their goals.
When you have cancer, you become aware of your goals: health goals, financial goals, bucket list goals, and goals for things you need to accomplish.
Along with concerns, family and friends also have opinions—sometimes strong ones that don’t line up with the patient’s. This is often about the patient’s treatment plan. An example of this would be when a patient decides to no longer receive active treatment and the family isn’t ready to stop fighting.
As hard as it can be for family and friends when there’s a disagreement, the patient’s goals must come first. Having an open discussion at a family care conference can begin the process of healing any divisions within the family.
Where to Meet
Have the meeting wherever is most comfortable and convenient for the majority of the participants. Think especially about what works best for the patient and their family. Keep distractions to a minimum, including turning off cell phone ringers.
Who Should be there?
This will depend on what the patient’s family structure looks like. Is the family close-knit, or do they rarely talk? Perhaps the patient’s family is a group of close friends who are there for them when the chips are down.
It’s important that the patient has at least one strong advocate present, to ensure other family members don’t gang up on him or her. This will likely be the patient’s primary caregiver and/or proxy.
Maybe the patient should attend—or Maybe Not.
If the patient is very ill, has dementia, or is a late stage patient who would be agitated by the meeting, their attendance may be more harmful than beneficial. This is when their proxy can step up to the plate and go to bat for them. To learn more about what a proxy is and does, check out this post.
Sometimes, when family members are having a difficult time dealing with their emotions, it can be helpful to have an initial meeting for loved ones to clear the air and be honest about their fears and concerns without having to censure themselves in front of the patient.
Because patients should have as much control over the process as possible, this is an area in which to tread carefully. A meeting should only be held without the patient if it is absolutely necessary for the patient’s well-being.
If you do proceed without the patient, it’s important to share the outcome of the meeting with the patient and even have a subsequent, less stressful, and possibly smaller meeting(s), which will include the patient.
Young Children Shouldn’t Attend a Family Care Conference.
Instead, they should later be told, in ways they can easily understand, what the overall plan is for their mom or dad. The nuts and bolts of the meeting will likely be overwhelming for them, and they really won’t have any say regarding the outcome, anyway. They don’t have the mature reasoning skills that adults have.
There is one exception to this. Hold a smaller family meeting for the express purpose of helping the children understand that they are loved, and will always be supported and cared for, can be very beneficial.
What about Family Members who are Unable to Attend?
This is when technology can really come to the rescue. Long distant family members can attend the family care conference via Skype of some other form of video or conference call (on speaker).
- Plan ahead. Create an agenda of what you’ll talk about at the family care conference. This will keep the discussion on track and ensure that everything is covered.
- Nominate someone who’s organized with good leadership skills to write and distribute the agenda, as well as possibly lead the meeting.
- Have someone else take notes on what’s said. Later, they can distribute a written summary of the meeting, either in the mail, newsletter-style, or via email.
- Some people will be more concerned with staying in the loop rather than having a say in what happens. For these people, a written summary of the family care conference will be beneficial, and they won’t need to attend.
- Another option is to videotape the family care conference. This can be dispersed to long distance loved ones, of those who are unable to attend due to work, or another obligation.
The Emotions of Cancer
- Not everyone will have processed their feelings yet. But, for those who have, the first meeting is a good time for everyone to share them. They may include fears, sadness, confusion, anger, guilt, and shame.
- Everyone should get a chance to speak. They should also leave their egos at the door. The most important thing is to help the patient and their family through this time.
- There is often someone who will want to monopolize the time. Whoever is in charge of the meeting will need to tactfully maintain control of the time
- If you are able to have several meetings, you will find they are far more successful. This way people can talk, and then, digest what was discussed, prior to the next meeting. There is so much to cover, that one meeting would be overwhelming and less productive than multiple shorter ones. This is a process.
Prioritize Helping the Patient in Practical Ways
- The patient or caregiver should share the latest report from the physician. This is a good way to begin every meeting since things can change quickly and rapidly with a cancer diagnosis—both for the better, and the worse.
- What about financial concerns? Medical costs, caregiving costs, and the effects of lost wages will all dramatically impact the family. Money can be a sensitive issue that many people like to keep private. Make sure the patient is comfortable including this topic in the family care conference. Brainstorm ways to alleviate this. Will you hold a fundraiser? Will the patient qualify for disability or government assistance?
- Are there foundations or support groups you can contact for information, support, and/or help? A resourceful volunteer should investigate and follow up on this.
- Caregivers will be feeling overwhelmed. It’s a good idea to delegate as much as possible, as early as possible, to prevent caregiver burnout. Is there someone who will take on the role of a “go-to” support person for the patient’s spouse?
- What are the patient, the caregiver, and the children’s needs? How can they be met? Who is willing to take on some extra tasks? Make a list or calendar covering these needs and who’s willing to help. Planner sites like TakeThemaMeal.TakeThemaMeal.com and caringbridge.org can be very helpful in tracking needs and volunteers. Someone could volunteer to set up and maintain this.
Hopefully, by the end of the meeting, there should be a basic plan in place to help the patient and family through their cancer journey. As you move forward, needs will change. There will be times when things are running fairly smoothly, and times when a turn of events increases the need for support. Plan for occasional subsequent family care conferences. I’ll cover that in the next post.
I am an author, writer, and speaker and homeschooling mom of 3. Since my husband, Dan was diagnosed with stage IV lung cancer in 2012, I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness.
My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com