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 center 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.
