In September 2016, Netflix released an original documentary, “Extremis”; a 24-minute account of the end of life experience in an ICU setting. The AAHPM member featured in the documentary, Jessica Zitter, MD, recounts her journey to becoming a hospice and palliative medicine physician and her idea for the documentary.
“In 2009, I realized the need for a movie addressing the state of dying in the Intensive Care Unit. I had just seen “The Waiting Room,” a documentary which depicted the humanity and suffering of patients in the ER of Highland Hospital, the county hospital for Oakland, California. I had just started working there a few months earlier. I was blown away by the film’s rich visuals and gripping stories. I wanted to bring that same lens to the issue of medical decision-making in the Intensive Care Unit. In this high-stakes environment, dying patients are often put on what I call the “End of life Conveyor Belt:” lined up for default high-technology life-prolongation, often without their consent or understanding.
It was a topic I couldn’t stop thinking about — although it hadn’t started out that way. When I was a young attending in the ICU at University Hospital in Newark New Jersey, I was all about life-prolongation, always seeking that high-technology heroic rescue. But an awareness was dawning that something wasn’t quite right. I just didn’t know exactly what. Then in 2003 the burgeoning Palliative Care movement found me, and rescued me from my growing moral distress. By a stroke of luck, I happened to work at the University of Medicine and Dentistry of New Jersey (now called New Jersey Medical School), one of only four institutions to receive a grant from the Robert Wood Johnson Foundation to improve communication in ICUs. These grants were part of RWJ’s larger initiative called Promoting Excellence in End of Life Care, run by our own Dr. Ira Byock. They were awarded in March 2003, and I was hired at UMDNJ in May of the same year.
I knew nothing about this grant until I was introduced to the members of the “family support team,” the precursor to what would become the Palliative Care team years later. I saw them roaming the rooms of our ICU, clipboards in hand, asking patients questions I would never have thought to ask: did they understand what was going on, what was important to them, were they in pain? Although I was initially resistant to the team’s remonstrations – “Why are you putting that catheter into a dying patient without telling her family she is dying?”- I quickly realized they were raising critical issues. Before I knew it, I was a convert. Under the guidance of Pat, the advance practice nurse who led the team, I began to practice more patient-centered care, and later passed my Palliative Care boards. Over the ensuing years, I’ve become convinced that the Palliative Care toolbox is absolutely crucial to patient-centered practice in the ICU.
After seeing “The Waiting Room” I approached the director, Peter Nicks, and asked him if he would be willing to put a face on the suffering of patients in the ICU. There were so many patients receiving non-beneficial and even harmful treatment, I told him. Pete, busy on another project, introduced me to Dan Krauss, who went on to direct “Extremis.” Dan, although an outsider to medical culture, was able to bring incredible sensitivity and insight to this very complex world.
I’m thrilled, and a little astonished, at the response to the film. The initial Netflix trailer went viral, garnering an unprecedented 5.5 million views in the first three days. I believe that this indicates the potential for change in both the lay and medical communities. I am in the process of creating a teaching curriculum for medical professionals and trainees which will focus on some problematic areas within our current medical culture, particularly in the ICU, and begin to explore structural solutions for change. I hope soon to be able to provide this curriculum to the many medical schools and communities contacting me with interest in using the film in a teaching capacity.
I’ve been spending the last year working hard on a book about these issues, Extreme Measures. The book will be published by Penguin-Random House on February 21, the day before the AAHPM conference in Phoenix. My hope is that both the book and the movie will serve to support this movement and help show us all the need for change in the way we approach death and dying—both the lay public and the medical professionals who, like me, may have been blinded by their training.”
AAHPM will hold a book signing with Dr. Jessica Zitter at the Annual Assembly on Thursday, February 23 at 5:30pm in the Exhibit Hall. Copies of her book “Extreme Measures; Finding a Better Path to the End of Life” will be sold at the AAHPM Resource Center at Assembly.