Fear of saying the wrong thing

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A familiar sentiment of loved ones who journey with someone who is nearing the end of life is the fear of saying the wrong thing. In our insulated worlds, we are so good at keeping tragic things out, that most of us haven’t witnessed examples of communication with those who have serious life limiting illnesses.

When you talk to patients, who are at the cent
er of it all, you will hear stories of both meaningful and insensitive things that have been said to them. Often, those responsible for the hurtful comments don’t even realize they’re doing it. In fact, when you break down the types of things that are insensitive, it usually revolves around self-focus versus other-focus.

For instance, when Veronica was being cared for in her home with end stage lung disease, needing breathing treatments and no longer able to get out of bed, her close friend who visited said to Veronica, “I just don’t think I can handle seeing you like this” While we can’t change how we feel about seeing people we love suffer, for Veronica to hear that was devastating.

In Mark’s case, he was at the hospice house expecting colleagues from work to stop by. As their visit neared, he realized he was too exhausted to entertain them. One of the colleagues who had taken off work for the visit and was disappointed responded to Mark with “This isn’t just about you, you know!” Mark was bewildered as he had assumed his death was about him.

I recently read an essay discussing something the author named Ring Theory, on how to avoid these types of insensitive mistakes. First draw a circle. This first circle is the inner ring, and the name of the person with the trauma goes in there. Next, draw a larger circle around the first, and put the name of the closet person to the one with the illness there. Another ring is drawn, and this is filled with immediate family. The next ring would be close friends, and the next acquaintances. This process can be repeated as much as needed.

These are the rules for this ring: The person in the center can complain, cry, and say anything to anyone. They can bemoan “Why me?” and they can be angry; nothing is off limits. The rest of the people on the list can also complain, question, and cry, however, only to people in the larger rings.

When talking to someone closer to the crisis, in one of the smaller rings, you must only offer support and comfort, e.g., listening versus giving advice. Remember it’s about them and not you.

It is normal to need to whine, or stress, or struggle, but do it with someone in a bigger ring. These were the mistakes of Veronica and Mark’s friends; they chose the wrong person to complain to. Simply put; Comfort in, dump out.

This simple rule of thumb is an excellent guide to how to talk to people with life limiting diseases. Maybe someday a card company will have a section for end of life issues, but until then just remember the rings.

 End Notes by Amy Clarkson
Medical Director South Wind Hospice