Barbara spent two weeks in the ICU with her younger sister Joan, who then died from an unknown infection. During her time with her sister, Barbara, a successful marketing professional, kept a journal about her family’s experience. After her sister’s death, she came across her own notes and debated with herself about whether she should write to the manager of the ICU. Then she thought, “If I were that person, I’d want to know what someone observed on my unit.” By way of sharing her experience in a positive (though quite instructive) way, she wrote Joan’s Family Bill of Rights in memory of her sister.
The manager of the ICU later told Barbara that she cried when she read the document and passed it along to leaders in her hospital who in turn sent it to people at the health care system level. They called Barbara to come and talk with them. She has since made numerous presentations within their hospital and is continuing to present information in hospitals elsewhere on the topic: What the Families of Patients Need.
We hear often from caregivers that including the family in care and really understanding what is important to the family can be confounding. I think Joan’s Family Bill of Rights provides some poignant insights about what it is like to be the family member by a loved one’s side during a painful illness. Barbara tells us what we can do to enhance their experience and help families cope and partner in the care of their loved ones. She also tells us what we may inadvertently do when we are not “awake” to their presence and needs, which will result in their feeling dropped rather than held in our care. She calls for us to remember that the family’s “devastating pain is internal, and there is no cure. Your kind words can save a breaking heart.”
Please read Joan’s Family Bill of Rights, share it with your colleagues, and use it for reflection and conversation about ways you can be attuned and present to the families in your care.