I recently read a book by Will Schwalbe entitled The End of Your Life Book Club. When I first heard this title, I had visions of people sitting around, drinking tea, and discussing books about death. But I read a review and realized the book had a very different purpose.
It is a memoir of the author's mother, Mary Anne, in her two-year battle with pancreatic cancer. The author and his mother were avid readers and began reading the same books and then discussing them -- often in waiting rooms during her cancer treatment. Reading the books helped Mary Anne maintain a sense of normalcy and the discussions created a closeness and intimacy between mother and son.
When Mary Anne talked about a character, she wasn't a sick person and it was freeing for her to express herself about the book. Through these discussions, the mother and son were able to share feelings, hopes, and dreams that seemed to be difficult for the two to discuss more directly.
Mary Anne was a strong person who often hid her feelings. But the book discussions gave each of them permission to talk about difficult subjects like faith, love, courage, and death. The son gains insight into his mother's goals and they become closer because of these discussions. The memoir also chronicles her decline and how her family coped with the progressive illness.
I found this book touching and it lead me to think about what we can do to help our patients experience a closeness with loved ones as they deal with advanced cancers. So often family members have told me they never wanted to bring up anything negative so these personal conversations more often than not never take place -- no one knew how to get started. Yet people often have regrets about being unable to achieve closure or express true feelings.
When a nurse knows a patient and family well, it can be a gift to help them identify how to have these conversations. Perhaps suggesting book discussions, support groups, prayers, writing down hopes, and sharing past memories are just a few examples of how to promote these kinds of connections.
Ira Byock, palliative medicine physician and author, has developed a simple tool for helping people make these connections using four phrases:
- Please forgive me
- I forgive you
- Thank you
- I love you
I have found that this simple, direct format has helped many people.
What have you done to help patients and families achieve important communication in advanced illness?