Yesterday I joined with other bloggers in a "blog rally" to (a) encourage ourselves and our readers to talk with those we are closest to about our wishes for end of life care and (b) to present a simple tool that could facilitate these discussions.
I learned from yesterday's Boston Globe that I'd gotten the story of the Engage with Grace project wrong in an important way. When Rosaria Vandenberg was close to the end of her life the hospital recommended that she stay. Although her brother did not know what Rosaria's wishes would have been - they hadn't had the kind of conversation Engage with Grace encourages - he took her home. Her two year old daughter, who had been afraid to touch her in the hospital, snuggled up to her in bed at home. Rosaria, opened her eyes for the first time in a week and gazed at her daughter. She died peacefully the next night at home.
Rosaria's family family felt it had made the right decision bringing her home, but wished they had talked openly with Rosaria about the values that were important for making the decision. Alexandra Drane, her sister-in-law, launched the Engage with Grace website to encourage others to have the kinds of conversations they wished they had had with Rosaria.
So many contributions to health care ethics come from individuals and families who learn deep lessons from their encounters with illness and mortality! These are gifts we can be thankful for.