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EOL video studied with cancer patients
Viewers more likely to avoid CPR
The latest in a series of papers published by researchers led by Angelo Volandes, MD, MPH, instructor in medicine at Harvard Medical School and documentary filmmaker, looks at the use of a video showing actual cardiopulmonary resuscitation, as well as other life-sustaining treatments often faced by patients at the end of life.
An earlier study tested a similar video in dementia patients, while this most recent study looked at patients with malignant glioma and was published in the Journal of Clinical Oncology.1 Volandes believes that the use of video to describe in pictures what end-of-life (EOL) options truly entail may one day be a "standard of care."
Volandes, who also completed a fellowship in medical ethics and serves on the Partners Health Care general ethics committee in Boston, says that during medical school, he "took a year off to do documentary filmmaking. After my third year, I realized that a lot of the discussions we were having on end-of-life were difficult to express using words. What I meant by those words and what my patient understood by those words were often two very different things."
Physicians such as Volandes and his team often realize, he says, that patients are more likely to look at today's "Grey's Anatomy" to gather an idea about what constitutes CPR and what their chances are of surviving, however inaccurate that idea may be.
"[Patients] would think of these very different realities, because on those programs, over 90% of people actually survive CPR, where in the advanced state of various diseases, the vast majority of people do not survive," Volandes says.
With regard to his interest in documentary filmmaking, Volandes went to film school during his fourth year of medical school to learn the art of documentary filmmaking. "I felt like a lot of the clinical realities the messy clinical realities in the details that clinicians see on a daily basis are difficult to communicate solely with words," he says. "There are many studies that showed that [physicians] are poor communicators; they often don't adequately inform our patients. So, being a medical ethics type . . . I wanted to make sure that we not only guide decisions from our patients to respect their autonomy, but also make informed decisions."
With the dementia study, his team randomized elderly subjects into two groups. One group received only a physician's description of typical EOL care options. The other half of the subjects were randomized "to have the same verbal discussion, but to also see a two-minute video," Volandes says. "And then we asked them the same question: What sort of care would you want? And, what we found was that in the group that saw the video, not only were they more informed about their decisions, but they also preferred more comfort-oriented measures. And we found that in a diverse group of people in terms of race, ethnicity, level of education, and health literacy."
They also asked their elderly subjects in the dementia study if they would be interested in seeing an EOL video for cancer, and 95% of respondents said they would be interested.
In the current study, Volandes developed and filmed a five-minute video on goals of care at EOL. "We attempted in a short, brief video to offer a broad framework for patients to understand what their options are at the end of life when they have advanced cancer," he says. Volandes notes that his team chose brain cancer because it includes all age groups.
"You have very young people, middle-aged people, and older people, and we really wanted to get a sense of: Would there be a difference [in response] in terms of age?" he says. "Would the elderly, say, be less likely to be amenable to having a video be part of the patient-doctor relationship?"
The video for cancer patients went through seven different versions, and in addition to the filming, Volandes did all of the editing for the five-minute video. It took two and a half years to make, about which he jokes, "Spielberg makes five movies in two-and-a-half years!"
The reason for the long development of the video was that Volandes and his team were attempting to reach a consensus about the video's impartiality among a group of oncologists, intensivists, ethicists, decision-making experts, and geriatricians. "We wanted to make sure that everybody in the group felt this was a fair and impartial portrayal of options at the end of life," Volandes says. "Now, you get a bunch of oncologists together and [try to] have them agree on anything, and they just don't. So, the written script for the video went through 10 iterations that was a year, just of itself.
"It is exhausting and laborious when you have to re-film just for one word, but we wanted to make sure we being the group of clinicians and scientists that I lead here that we wanted to create something that oncologists would agree is impartial and unbiased and that oncologists would actually use," Volandes explains.
He notes that his team has developed and published a set of guidelines to create such videos. "We invite others to make similar videos and see if there's something that we did differently or that they do differently," he says.
Already, certain health care networks are conducting pilot studies using the video in their end-of-life conversations. At the moment, there are pilot studies at four locations, but the team expects to have 10 in place at academic medical centers this year.
Volandes and his team are already studying the use of video in other cancers at Memorial Sloan-Kettering in Boston." Just to be clear, this is not meant to usurp or replace the doctor-patient discussion and relationship; rather, this is meant to reinforce that discussion," he says. "An ideal use of this would be having a discussion with your clinician, whether it be a physician, nurse practitioner, or social worker, and then viewing the video to reinforce what's been discussed."
Even though the video is thought to be "scary to watch" even for Volandes he thinks that "if patients are telling us they want this information, then this is one additional tool with which to empower [them]," he says. "And I think it's incumbent upon the profession to equip them with those tools to make these decisions."
1. El-Jawahri A, Podgurski LM, Eichler AF, et. al. Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. J Clin Oncol 2009; 28:305-310.
For more information, contact:
Angelo Volandes, MD, MPH, Instructor in Medicine, Harvard Medical School, Boston, MA. E-mail: firstname.lastname@example.org.