Kate Lorig, RN, DrPH is the Director of the Stanford Patient Education Research Center , Professor of Medicine in the Stanford School of Medicine and a William Ziff Fellow at the Center for Advancing Health.

For more than three weeks I have been hanging around the ICU.  Lara, my friend and colleague, is poised between life and death, having rejected her five-year-old transplanted lungs.  She awaits the gift of a chance for life from another donor.  Lara wants so much to live. During her last conversation with me before being placed on a ventilator, she talked about her fear.  Now breathing and most everything else is done for her.  Drugs keep her oblivious to the suspense.

Her parents and young adult siblings keep in touch with family and friends via Facebook.  Thus, these most private of moments of Lara and her family are lived in the public eye.  Lara has more than 250 Facebook friends. Daily her parents update us and we respond.  The posts reflect our own experience with illness.   Some of us use the language of fighting: Winning means living and losing means death.  These friends by their language reflect their values and wishes.  Others of us do not know what is right and simply wish Lara and her family peace and acceptance no matter where the path may lead.

Some friends on Facebook focus on the daily symptom cycle: lower temperature, functioning kidneys, getting out enough pee, and of course, wishing that new lungs can be found in time.  Few of these friends, at least in their posts, appear to notice that new lungs mean tragedy for another family.

There are friends who post their prayers.  Denomination or brand of religion makes little difference.  The prayers differ. Some are very specific, for example those asking for new lungs.  Others are more general: “You are in our thoughts and prayers.” And some show a deep understanding of the impact of Lara’s illness: “May a family overcome with grief see their way to give life.”

Facebook also brings friends to the actual waiting room of the ICU.  At times we come believing this is will be our last visit.  When Lara shows slight improvement, we feel relief and the waiting room becomes giddy and noisy.   At other times Lara’s parents are by themselves or with a few others, each keeping their silent watch.   We remember good times, tell stories and hang on any word her doctors share with us.  We take turns visiting Lara, stroking her hand, braiding her hair, bringing her mementos she may never see and talking to her, hoping that our visits bring comfort even as they raise our own anxiety.

As days turn into weeks, hope wanes.  Lara is taken off the transplant list and now is in a living limbo.  Parents, friends, siblings, and even health care personnel cannot give up hope, cannot let her go.  The Facebook posts become fewer.  What can one write?  How can one respond?

“Our dear, sweet Lara passed away this evening surrounded by family and loved ones. Time and location of services will be posted on Facebook. Thanks to all of you who supported her and us during these trying weeks. Love, her parents and family”

Now the hundreds of posts on Lara’s Facebook page stand as a memorial to the friend we have lost.