05 Mar Unthinkable

When we look backwards and find that the unthinkable has become the norm, it creates a frame through which we can examine the present. By “the unthinkable”, I am referring to ideas that are either so embedded in our culture that they are like stenches that we cannot smell, or run so counter to the prevailing cultural way of thinking, that it seems impossible for us to believe them. For people living in the South in the 1950’s the idea that we would have a society that was un-segregated by law might have seemed impossible. For people living in the America now, the prevailing view is that segregation has ended. However statistics belie this fact, showing us that our nations schools, and many other parts of our society, are more segregated than ever. Health care follows the same pattern. Ask most Americans and they will tell you that we have some of the best health care in the world. The numbers tells a different story. If we don’t have good affordable health care doesn’t it make sense to ask difficult questions? I’m not referring to how money is spent, but instead, why, and what for? If we don’t challenge ourselves to entertain uncomfortable ideas or thoughts, it is extremely unlikely that we will find answers. This is true for individuals as well as society at large.

As filmmakers, my partners and I, make films about individuals who ask hard questions that have powerful resonance for society. In our 2002 documentary “Horns and Halos”, the main character, engaged in re-publishing a controversial campaign bio of GW Bush, says, “We publish people with problems, because mainstream publishers won’t”. Looking back at the film last week I realized that he could have been talking about us. We make films about people who challenge mainstream ideas, often leaving these people struggling to be heard. As such, all of our films are in some ways a reflection on our own process. We are currently working on a film that asks very challenging questions about the way in which we, as a society, approach health care. Sometimes, if a doctor simply asked a patient, “what’s going on in your life right now?”, they might find obvious answers to “untreatable” health problems like migraines, colitis, ulcers, cancer, pain syndromes, anxiety, and more. All of these are known to have a psychosomatic relationship, but they are rarely treated from that perspective.

This morning, on the way to school, my daughter, who turns 12 years old today, asked me if the former UNC basketball coach, Dean Smith, was still alive. “Yes, but he has Alzheimer’s disease, so he has a difficult time remembering things.” I went on to explain the possible connection between auto-immune diseases and repressed emotions. As we waited to turn into the school I pushed her hair behind her ear and explained, “That’s why I try to talk to you about being present, calming down, not eating crap, and paying attention to things like not getting lost in your ipod. I want you to stay healthy until you are 150, so it’s important to think about these things.” She listened for the most part. Maybe now that she’s 12 she won’t act like a teenager anymore. In all seriousness, the fact that she had listened to me fully in this moment gave me a lot of hope. The more that I look into health the more I see how powerful the connection between mind and body is, and how little it is considered by the health care industry.

As I left the school and turned on the radio I was presented with a story that highlighted these issues. In LaCrosse, Wisconsin 96% of the people in town have an end of life directive (sometimes known as a living will), and this has had a profoundly positive effect in that community. There were two important takeaways from the story. First, the reason the town has such a high rate of directives is that the ethicist at the local hospital took it upon himself to change the way the community approached end of life decisions. He came to realize that talking with families, when it was too late to include the dying person in the conversations, was unfair to everyone. Families, faced with making life and death decisions are rarely willing, or able, to challenge the idea of endless interventions to save a patient’s life regardless of the outcome. That is, it’s almost impossible to act cogently in stressful situations without a plan in place. This is why businesses, governments, and social institutions often have protocols in place to make sure there is a pathway for decision-making in crisis situations.

If we don’t know where we are going, then we don’t have any directions on how to get there. The ethicist at the hospital, Bud Hamms, made it his mission to make sure that the decisions about end of life care included the people who were sick. Culturally, we are even less comfortable talking about death than we are talking about sex. As such, it took a little pushing to get people on board, but once the majority of people understood the importance, and usefulness, of an end of life directive, the rest of the town quickly followed suit.

The first takeaway, that one individual, asking the right questions, helped an entire city to do the unthinkable, created the second takeaway. The story made it clear that LaCrosse now has the lowest per capita health care cost in its region. As it turns out, end of life care eats up from 17-30 percent of total health care costs. When some people saw the numbers, they used the information to argue that medicare was rationing health care to the dying, or instituting “death panels”. In fact, the opposite was true. People were being rational about their decision-making. A couple of years ago I took my old sick cat to the vet. They wanted to do an expensive ultrasound. I refused, and explained that I wasn’t prepared to have them do surgery, and it wasn’t clear what an ultrasound would tell them. They expressed shock and outrage. I had no intention of having them perform surgery on my 16 year-old cat. I loved her very much, but I didn’t believe it was fair to the cat to do it.

When sick people were asked a questions about what they wanted to have happen in a wide range of scenarios, the vast majority of them chose less intervention over more, especially when the possible outcomes included severe disability. The data from Lacrosse shows us that while we may want our loved ones to live forever, they often don’t want to suffer. It’s also possible that people have a hard time making decisions for the dying without having their input. This leads to a slippery slope of invasive procedures that may prolong life but not the quality of that life. Having the opportunity to ask the hard, yet straightforward, questions for themselves has proven to be a good thing for the patients, for families, and the health care system. Think of the untold suffering and expense that can be saved if more hospitals, and communities put the same protocols in place.

I was drawn to this story because as I said, my partners and I often ask these hard questions before people want to deal with them. In fact, we even ask them before we are ready to deal with them ourselves. We are currently at work on two documentary projects that we began nearly 10 years ago. The first, “Story of Pain”, focuses on the relationship between mind and body when it comes to medicine. The main character, Dr. John Sarno, worked as a doctor for over 50 years before retiring in 2012. In the early 1960’s, while working as an orthopedist at the Rusk Institute for rehabilitative medicine, he came to understand that there was a relationship between stress and back pain. More specifically, he found that there was a great deal of evidence connecting repressed emotions with pain syndromes. When he treated the problem with this knowledge he had great success in helping patients. He asked questions that the vast majority of people were unwilling to entertain at the time. In fact, when we began the documentary over a decade ago, we had great difficulty in wrapping our minds around just how profound the mind body connection is.

This is one of the reasons we have struggled for so long to fund and make this film. However, over the last year I have seen a profound change in the public perception of the relationship between stress and illness. My google alert for “chronic pain” used to be filled with press releases for pain clinics, drugs, and hi-tech treatments. Recently, I have seen a flood of articles detailing the connection between stress and pain. The articles often mention meditation, and other mind body solutions, as the best, and least invasive, cures. Ten years ago, if I suggested to someone that their back pain might be more related to their stress than a structural problem with their back, it often didn’t go so well. Now people are much more open to this idea. We are starting to edit in earnest and feel confident that people will be ready to ask the hard questions when we present them through the film next year.

The other documentary, “Conception” focuses on ideas about nature vs. nurture in regards to assisted reproduction as well as adoption. This is an area where very difficult ethical questions have not been examined very thoroughly. As with “Story of Pain” we needed to span a good deal of time while making the film in order to have enough distance to ask the hard questions that need to be asked.

The situation in LaCrosse should send a resounding message to the rest of America. Asking the hard questions may be uncomfortable, but it is undeniably valuable. If we extrapolate further we might find that asking the hard questions every day is valuable in all aspects of our life. When we continue along a path simply because its well worn, we will have no idea what exists outside it.

click here to download an advance directive form for your state.