A Sample Agenda for Family Meetings about Long Term Care

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When you plan a family meeting to discuss your long-term care options, present it as a preliminary discussion, not a done deal (unless a crisis has occurred).

You may say to your adult children, for example, “This winter has made it clear to me that I really can't keep up the house and grounds the way I used to. I'm thinking about moving — maybe to assisted living, or maybe just to a smaller house or apartment. I've done a little research but I want to get your opinions.”

Or, “Since your father died, I've been really lonely in this big house. I think it's time to make a move, but I'm not sure what to do. I don't want to move in with any of you but it would be nice to be closer.”

Or to your siblings you might say, “You all know that Mom had a few bad falls recently. Her doctor is concerned that the next one might be even worse. Mom wants to stay here in the house she has put so much love into and that we all grew up in. But is that the best choice? Mom can speak for herself but she asked me to start the discussion with you.”

You probably don't want to follow a formal agenda and parliamentary procedures, but it is a good idea to establish some ground rules. For example,

  • Describe the purpose of the meeting and what you hope to accomplish.

  • Make it clear that everyone will have a chance to speak and that all views are important.

  • Encourage questions and concerns.

  • Let participants know that personal gripes and problems are off limits.

  • Set a time limit for the meeting. Meetings that go on endlessly are unlikely to resolve issues.

  • Near the end of the designated time, sum up (or ask someone else to do it) and make a list of the issues that need to be resolved, who will gather more information, and when you will meet again.

For example, if the meeting is to discuss a change in your own or your parent's medical condition, and this may mean additional help is needed, you may want the agenda to include:

  • A concise description of the medical condition and recommended treatments (it is helpful to have a doctor's summary as well as a plain-language interpretation).

  • Share any preliminary research you’ve conducted. Don't set yourself up as the expert, but try to counter opinions that you know are not based on fact.

  • What the course of treatment will mean in terms of its physical impact on you or your parent and the extra help that will be needed (someone to help with household chores, someone to manage finances, someone to communicate with doctors).

  • Likely length of treatment.

  • Financial implications (what insurance will cover, what will have to be paid for out-of-pocket.

  • What may be down the road, such as the need for full-time help or move to assisted living.

  • Next steps and who will take on specific tasks.

The most important part of the agenda is not the specific items you put on it, but the nonjudgmental and open-minded atmosphere you create. Even if no decisions are reached, you will have set the stage for further meetings and discussions.

All too often a family meeting is something that happens in a hospital, with professionals guiding the discussion, with a focus on end-of-life care. Better start the process long before that and on your own terms.

Unless you have to make an immediate decision (and you should try to avoid that), one meeting is not going to resolve the issue. The outcome of the first (and maybe the second and third) meeting should be a good discussion of the possible choices, with unanswered questions put on the table.

Everyone should have an opportunity to speak and to be heard. Closing off discussion prematurely only causes problems later. Of course, this is easier said than done in families with a history of poor communication, but that is not a reason not to begin.

Although long-term care planning includes consideration of end-of-life issues, such as advance-care planning, in my view it is best to separate these emotion-laden discussions.

It is hard to go back and forth between discussing the merits of assisted living and the kinds of treatments one would want in a terminal illness. But both are important, and one can set the stage for the other. Use your judgment and your knowledge of family dynamics to decide where to start.

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