Alongside the scientific search for pain mechanisms and the clinical quest for better treatments lies a problem of policy: Does care reach the patients who need it? A team of filmmakers turned their cameras to that crucial question, examining the experiences of people with terminal disease who suffer from severe pain. In a new documentary, they show how, despite the existence of inexpensive, effective medications such as morphine, pain is appallingly undertreated, leaving many to die in needless suffering. The film, LIFE Before Death, is being released 1 February, with screenings planned worldwide.
The filmmakers hope the movie will be an eye-opener for health professionals, policymakers, and the public, and will raise awareness of the dearth of palliative and pain care worldwide. “For us, the overarching goal is advocacy. We hope that organizations can take the materials we’ve created and use them as a launching pad to further their initiatives,” producer Sue Collins told PRF. “The more people know, the more likely change can actually happen.”
Collins said that she and her husband and fellow producer Mike Hill, both of Moonshine Movies in Melbourne, Australia, were introduced to what they call “the global crisis in untreated pain” in 2009, when they read a World Health Organization estimate that approximately one in 10 people in the world suffers from severely undertreated pain because of lack of access to morphine and other pain-relieving drugs. Soon afterward, Moonshine Movies, and the LIFE Before Death project, were born. Altogether, the effort includes the feature film, 50 short films (35 shorts are available online so far), and a television documentary that the group plans to air later this year.
The filmmakers traveled to 11 countries to bear witness to the grave consequences of drug scarcity, and the satisfying results of care delivered well. They draw heavily on interviews with healthcare specialists and pioneers in pain care. The film was produced in partnership with the Singapore-based Lien Foundation, the International Association for the Study of Pain (IASP), the Mayday Fund, the Union for International Cancer Control (UICC), and the Institute for Palliative Medicine at San Diego Hospice in California, US. Screenings of the feature film are set to coincide with the UICC’s World Cancer Day on 4 February.
To look for a screening in your area, see the LIFE Before Death website.
In another look at the state of pain care, an article published January 19 in the New England Journal of Medicine asserts that legal obstacles to prescribing and administering opioid drugs in many countries, meager education on pain and palliative care for healthcare professionals, and the invisibility of people dying in pain conspire to create an unconscionable paucity of palliative care, particularly in the developing world (Lamas and Rosenbaum, 2012). Another article in the same issue, written by the co-chairs of a 2011 report from the Institute of Medicine of the US National Academy of Sciences, relates how, even in the United States, ignorance among clinicians and the public hinders appropriate pain treatment (Pizzo and Clark, 2012; also see related PRF news story and comments).
Image: Dr. M. R. Rajagopal treating a patient, Kerala, India. Image credit: Moonshine Movies.
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Pamela Ressler, Tufts University School of Medicine
For colleagues in the Boston
For colleagues in the Boston area, the Tufts Pain Research, Education and Policy Program is presenting a screening of this important film on Thursday, February 2 from 3:00-5:15 PM at Tufts Medical Center (Wolff Auditorium). LIFE before Death will be introduced by nationally syndicated health columnist, Judy Foreman, and followed by a panel discussion with leading pain experts. Please join us for this free event. Click here for more info
Megan Talkington, Pain Research Forum
The PRF team attended LIFE Before Death screenings last week. We found ourselves moved by the stories of patients and families, and grateful to the filmmakers for bringing them to us. The film expertly interweaves intimate portraits with illuminating comments from health professionals, policy makers, and palliative care pioneers. Together, the elements make for an informative, bracing experience.
After the film, I spoke with Kathleen Foley, Memorial Sloan-Kettering Cancer Center, New York City, USA, whose deep passion for the project was evident. Foley, a PRF science advisor, served as an advisor to the filmmakers and appears in the movie. She had these comments about the relevance of the documentary not just for policy makers and the public, but for researchers as well:
“In their abstracts and grants, pain researchers always put in something saying that the work is important. This film is about exactly why it is important. I hope the film will remind pain researchers of the moral imperative for the work they do.
“There are an extraordinary number of people in the world who are in pain, and research would make such a difference. LIFE Before Death focuses on the availability of drugs like morphine, but even those simple drugs require a research base. And we need so much more than morphine, because there are so many aspects of pain for which we don’t understand the mechanisms or have good treatments—so in the long haul, research is going to be the answer.
“At the core, the film addresses a common human experience of pain, and the ways it interferes with people’s quality of life. Often the problem is just theoretical; perhaps the film will make it real, and personal. Pain research is profoundly underfunded, so there is a tremendous need to tell these stories.”
If you have seen the film, or some of the shorts (available free at the LIFE Before Death website, please share your reactions by adding a comment here.