Sooner or later, it happens to every patient advocate or navigator who works with patients on the medical aspects of their care (as opposed to other forms of advocacy, like billing or legal advocates).
One of “our” patients – someone whose hand we have held, who we have protected from problems in the hospital, who depended on our advocacy expertise as a way to make the rough road through disease and debilitation smoother… A patient we had built a comfortable and friendly relationship with, a patient we invested ourselves and our work in…
That patient dies.
And we feel like we have failed.
It’s the nature of advocacy work that patients don’t come looking for us until they have been diagnosed with something that will, perhaps, eventually end their lives. That’s why they seek our help. They are fearful, they don’t understand the overwhelming amount of information they are expected to immediately comprehend. They have decisions to make and feel incapable of making them. They, or the caregiver who better understands their predicament, searches for, and finds, that one person who can help smooth the road… the advocate.
And it’s our nature, as advocates, to want to rescue our patients from their fears and frustrations, and to save them from all that grief. But as one of my wise patient advocates friend reminded me,