In this line of work, one of the non-pecuniary benefits is meeting remarkable people … like Jamie Aten Ph.D who I blogged about yesterday. Before we go any further, and if you are wondering what the heck ‘non-pecuniary’ means it goes back to my labor economics classes at Chicago with Sam Peltzman. ‘Pecuniary’ means related to money … and patient advocates don’t see much of that. Ironically, a significant for-profit corporate player in the field of patient advocacy whose stated mission is to help advocates find compensation, asked me yesterday to assist them with an online educational program they are compiling. When I asked if it was compensated, their response was no, however I should be satisfied with building my network and my resume from the ensuing publicity ….. OPM, I guess .. ‘other people’s money!’ But I digress ….
Back to remarkable people, especially Dr. B.J.Miller who kindly serves on our Advisory Board and boasts a TED Talk with more than 9 million views at last count! BJ is a palliative care doc at UCSF where I have had the privilege of working with him since around 2012 – I love the guy! For several men I have introduced to BJ, he has been their lifeline. You have to know BJ was a national class varsity rower (should I declare a bias here?) who was recruited by Princeton; as a sophomore, he endured a life changing injury that cost him three limbs! BJ has the remarkable knack of connecting to people challenged with life threatening disease.
BJ Miller and Shoshana Berger are publishing a book mid-July, A Beginner’s Guide to the End, and last Sunday the New York Times printed an opinion piece by them, Don’t Tell Me When I’m Going To Die …. you’ll be relieved when I say that’s the required reading rather than the book, Folks! BJ and Shoshana refer us to a very simple form called a ‘Prognosis Declaration’ developed by a man called Steve Scheier when he was caregiving his terminally ill wife. It puts YOU in charge of what you want your doc to tell you about your survival prognosis …. and if you give it to your medical team IN WRITING, they will need to abide by it. What a simple concept, but perhaps it can change how you live your life!
And my thanks to Len for blogging ‘Here’s Your Prognosis …’ otherwise I would not have noticed BJ’s opinion piece.
Truly onward & upwards!