Who Will Tell Your Story?


April 16th is National Health Care Decisions Day (NHDD). This is an annual event that highlights the importance of making healthcare decisions before there is a healthcare crisis. This can be done through the completion of an advance directive (living will) and/or naming a healthcare proxy/surrogate decision maker.

This day is so important. Research studies show only 37% of Americans have an advance directive. Given the certainty of illness and death in our lives, NHDD aims to normalize this conversation for all individuals, not just those who are sick. But, quite frankly, we stink at these talks. Talking about the end of our lives is not pleasant—its morbid, scary, and feels so permanent. How can we make this more approachable, acceptable and relatable?

A couple of weeks ago, I got to see Hamilton in New York City. A key plot point of Hamilton is the concept of narrative—of telling our story. So, I got to thinking, isn’t my advance directive-my thoughts about what kind of medical interventions I would want if I have an advanced illness-a huge part of my story?  And isn’t my surrogate decision maker the person who will tell my story? 

I started with thinking about what and who are important characters/plot point in my story: my family, my move to Philadelphia to attend graduate school, becoming a social worker, focusing in oncology social work practice, being a dog mom, therapy dog volunteer work, knitting, my friends and neighbors, traveling, being outside, independence and autonomy.

Wow. That says a lot to me about what I might want in the face of advanced or life threatening illness: a respect for my independence, avoiding suffering, my dogs, and my family and friends. So why NOT include these things in the telling of our stories, especially at the end of our lives. Sometimes, illness robs from us our ability to tell our own stories, “…when you’re gone, who remembers your name, who keeps your flame…who tells your story?” Talk to “your person” about your story and how they can tell it for you.  Appoint them to be your surrogate decision maker.

In the words of Hamilton, “look around, look around, at how lucky we are to be alive right now.” Take it in. Ask yourself what is important in your story. How you would want that to be incorporated into your care when faced with advanced illness? 

Learn more about advance care planning on OncoLink.

Need help getting started with telling your story? Check out these excellent advance care planning resources from NHDD.