“How old do I have to be to have you as my doctor,” I asked my mother’s amazing geriatrician, who was unlike any other doctor I have ever encountered. She took time, listened, and cared about all aspects of my mother’s care, including getting us all to think about the hard questions considering her future as an 80-year-old with debilitating pain from osteoporosis, as well as many other chronic health issues. What I didn’t realize–yet–was that Dr. Diane Meier was a palliative care physician as well, and what I was witnessing was a new approach to taking care of the seriously ill that could transform American medical care.
But it was not long before my documentary filmmaker instincts took hold. What I had seen practiced by Diane Meier, and later by Dr. Amy Kelly, who took over my mother’s care when Dr. Meier took a leave after being awarded a MacArthur Genius Grant, was not just revolutionizing health care, it could be a powerful subject for my next film. I enlisted the help of two colleagues, Peter Miller and Justin Schein, both wonderful filmmakers, and both also facing the issues of caring for their own aging parents. It turned out that Justin’s dad had been a patient of Dr. Meier, too.
Since Palliative care was an emerging field, we decided that the central “characters” in our documentary would be the young doctors who were learning the methods of this new discipline during a year of fellowship at New York’s Mt. Sinai Hospital. From my own personal experience as a family member, I knew that at the heart of palliative care practice is communication. We filmed the fellows during their initial intensive training, including sessions with actors playing the role of patients and families. Dr. Meier tells us, as we watch the young doctors struggle with this challenging work, “Communication is a procedure just like a surgical procedure. It needs to be taught just like a surgical procedure, and it hasn’t been.”
What I didn’t understand until we started filming the palliative care fellows in action, was that treating all forms of pain was also central to these doctors’ work. As we follow the fellows into their day-to-day practice with real patients, we watch as they learn to focus on patients’ pain–chronic, acute, spiritual, emotional. Understanding how to both prescribe pain medicine and evaluate and try to ease all kinds of pain and suffering is an essential part of this new medical specialty.
Through the fellows, we come to know several patients whose medical and personal stories we trace over the course of the year. We meet Minnie, a lively 29-year-old, engaged to be married, whose community rallies to her support and sponsors a wedding when they learn of her terminal cancer diagnosis. Her few weeks as an inpatient on the Palliative Care Unit at Mt. Sinai are primarily focused on trying different types and doses of opioids, radiation and art therapy to manage her physical and emotional pain so that she can return home. We get to know Sophie, a young mother who is dealing with immense emotional pain over the fact that she will not be able to live long enough to see her young son grow up. The palliative care team helps her navigate a myriad of decisions in her last months to optimize her time with her son.
We follow Jay, who works with palliative care doctors to find alternative therapies–from experimental pain relief to meditation and therapeutic artwork–to relieve the relentless pain of his disease. And we meet Maria, a vivacious 90-year-old who survived the Holocaust in an attic in Poland but, despite her extraordinary resilience, is anxious and cold and wants these symptoms to be taken seriously and not shrugged off, as her traditional internist has done. These, and several other compelling stories of patients coping with all types of pain, unfold throughout the film.
Outside of the hospital, we watch as leaders in the field try to convince government and health care bureaucracies to make palliative care available throughout the medical system. We even follow Dr. Sean Morrison to Washington, DC, where he lobbies for palliative care legislation before Congress.
The reality that we were witnessing became powerfully relevant to me as we were just getting started with our filming. All at once, I suffered a third degree burn on my arm that required a skin graft, and found out I had breast cancer. I then juggled collaborating on the film with my stalwart partners and undergoing multiple surgeries, ultimately enduring the life-threatening complication of a MRSA staph infection. With my new-found sensitivity to the relationship between pain management and illness, I found a very different voice as a patient than I would have if I had not been exposed to palliative care through my filmmaking.
I did not have palliative care doctors on my case, and in truth I could have used them to manage various episodes of pain. My surgeons—and my husband—seemed to want me off opioids as quickly as possible, though I had no history of issues with pain medication or addiction. In the past, I might have been stoic, having been taught that being a good patient involved being compliant and undemanding. But now I had a nagging feeling that this kind of compliance was not in my best interest. I reached out to a palliative care doctor I knew from the documentary, who explained that being out of pain would make me more mobile and ultimately speed up my recovery. I spoke up and got the medication I needed and was soon back to my life—and my filmmaking.
Some friends wondered why I would want to spend my first days of being up-and-around again at Mount Sinai’s Palliative Care Unit, filming medical fellows caring for patients. But being there was, in fact, an inspiring and informative experience that I believe helped speed up my recovery and regain the quality of life I desired.
And that focus on quality of life-shared by the patients we followed, the doctors who provided them care, and my own personal experiences—gave us a name for our film. “Quality of Life: Palliative Care and the Future of Medicine” will be a feature-length documentary that we expect to reach wide audiences in cinemas, on television, in educational settings, and on video. We hope that, just as filming palliative care in action helped me when I became a patient, our documentary will help audiences better understand their own biases about pain management, as well as the unspoken attitudes about pain and chronic illness that permeate our society.
American medicine must respond to the needs of an aging population in which more people are living longer with serious illness. Our film will look at these big-picture societal issues while it tells a series of interconnected human stories, building suspense and dramatic tension over the course of one eventful year, in which we witness transformative personal moments and significant steps toward much needed, broader change.
Academy Award-winning filmmaker Peggy Stern is making “Quality of Life” with producing partners Peter Miller and Justin Schein. For more info, visit gladeyesfilms.com
Photo courtesy of Palliative Productions, LLC