On April 7, 2010, Terry Kaldhusdal and I were flying to New York City to meet with authors Thomas Cathcart and Daniel Klein for Consider the Conversation, our film about the American struggle with communication and preparation at life’s end. While preparing for the interview, our discussion shifted to constructive criticism given six days earlier by an African-American physician who attended an educational conference where we screened clips from the unfinished film. Her feedback was extremely helpful. She said, “Your work is good, necessary and important; however, as a minority, I strongly encourage you to seek greater diversity among those interviewed because what works for a person from one background may not work for another. “
On the one hand, we felt this doctor was right - individuals do indeed make end-of-life care decisions that are influenced by their backgrounds. On the other hand, we felt she was missing something important. Anecdotal evidence gathered from twelve months of our interviews to that point seemed to suggest an unmet universal human need at end-of-life. That is,
all people, regardless of whether they are black/white, urban/rural, rich/poor, Democrat/Republican, Protestant/Catholic, etc. have hopes, fears and desires about life’s final chapter they want to express. What we’re failing to do as a culture and medical system is give people permission to talk.
Upon arrival at LaGuardia, we decided to test the theory by taking our camera onto the streets of New York City. Over the course of the next three days, 62 people of all different ages, races, nationalities, sexual orientations and religions were asked one simple question – When it is your time to die, where would you like to be and with whom? Amazingly, nearly everyone interviewed said the same thing, “Hmmm, that’s a good question. I’ve never thought about that before [part of the problem], but now that you ask me, I’d prefer to be at home, surrounded by those I love and not in a hospital or nursing home.” Portions of these interviews later became the opening chapter of a documentary that is shifting the nation’s paradigm about how to approach end-of-life communication.
The powerful lesson we learned while filming on the streets of New York City is that the conversation is the means to the ends. That is, engaging in advance care planning dialogue not only provides clues about what matters to the individual, it’s also good preventive medicine. Seen in this context, advance care planning helps prevent unnecessary physical, emotional, spiritual, and social suffering at end-of-life.
My friends, it is time for Americans to not only consider, but also support and engage in the conversation.
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