Summary: A series of videos developed by a multidisciplinary team of clinicians that includes ethicists and palliative care doctors helps patients understand the risks and benefits of various end-of-life treatments. Designed for patients facing advanced dementia, cancer, and heart disease among many other conditions, the videos capture the experiences of actual patients to illustrate the trajectory of diseases or conditions and spark conversation among physicians, patients, and their caregivers about advanced care planning.
By Sarah Klein
Physicians play a vital role in helping patients understand that receiving intensive care at the end of life may not produce the results they seek and may instead increase their discomfort. Yet some doctors are reluctant to broach the topic, partly for fear of upsetting patients. To facilitate these conversations and help educate patients, Angelo Volandes, M.D., M.P.H., an assistant professor at Harvard Medical School and an internist practicing at Massachusetts General Hospital, and colleagues created a series of videos to help patients understand the trajectory of certain diseases, including advanced dementia, cancer, and heart disease, and the interventions used to treat them.
Volandes says the videos provide a compelling visual of procedures and outcomes that can be hard to explain with words alone. "I can talk until I am blue in the face about advanced dementia, but if I show someone 30 seconds of a woman with advanced dementia, they immediately get it," he says, a point that was reinforced the first time he admitted a patient to a hospital. The patient, a highly literate and retired poetry professor with widely metastatic cancer, was baffled when Volandes asked what measures the hospital should take in the event her heart stopped beating. Struggling to explain procedures he himself had yet to perform, Volandes suggested a tour of the I.C.U., where by happenstance he and his patient witnessed a cardiac arrest. Volandes repeated the tour with other patients, often sneaking into the I.C.U. at late hours when he was less likely to be challenged. When nurses objected to the privacy violations, the idea of creating the videos was born.
Now used in 35 large health systems across the country, including Seattle, Wash.–based Group Health Cooperative, the videos deliver educational messages about various serious health conditions and show real patients living with the diseases and undergoing life-sustaining procedures—including the use of feeding tubes, ventilators, and defibrillators, and for advanced cancer the experience of sepsis.1 The videos are scripted by a team that includes interventionists, cardiologists, and oncologists, as well as health literacy experts, ethicists, and palliative care doctors and are reviewed by as many as 50 experts for each of the conditions.
Creating a single video takes a year or more as reviewers debate the content and wording of the scripts. "We are trying to make sure they are as neutral as possible so that the videos are never interpreted as trying to steer a patient one way or the other," Volandes says. Whenever possible, the team also avoids using graphic images—turning for instance to a dummy rather than a real patient to illustrate C.P.R. "Our goal is not to scare people. We're trying to inform them," he says.
Volandes and his colleagues have done extensive research to determine the impact of the videos on patients' preferences and have found fairly consistent results that have been published in leading medical journals: those who view the videos demonstrate more knowledge of their disease and a better understanding of the likelihood of success of various interventions than those who receive the same information through a verbal explanation alone.2 The images often correct common misperceptions of procedures that patients have gleaned from television, where, Volandes says, "everyone survives C.P.R., everyone looks good on a ventilator, and everyone all of a sudden comes off a vent."
The studies have also revealed the extent to which patients misunderstand the probability of various treatment outcomes. For instance, when viewers are asked—pre-viewing—how many patients with advanced cancer survive C.P.R. and walk out of the hospital, many say almost all or about half, rather than the correct answer: very few. Patients who see the videos get the question right the second time around and tend to request few or no life-prolonging procedures. Volandes is confident the videos are not overly discouraging because more than 90 percent of viewers say they would recommend them to others, and there are always viewers who request all life-prolonging procedures.
To distribute the videos, Volandes created a nonprofit organization, Advanced Care Planning Decisions, which makes them available to health care institutions for a nominal price with the proviso that a clinician must be present when a patient views one to ensure a follow-up discussion (follow this link to see a sample video.) The team briefly considered making the videos publicly available, but decided against it. "We thought to ourselves what an easy way out for a doctor who is bashful or just doesn't like having these conversations to steer patients to the video," Volandes says.
The group expanded the focus of the videos beyond end-of-life care. "We're trying to make a video of everything," he says, including one that illustrates the concept of informed consent and the risks and benefits of six leading interventions in the I.C.U. They've also created a video introduction of hospital care for patients and their families. "We believe that [for] any point of contact the patient has with the health care system, there is a video that can be made and we hope to make it."
1 The videos are approved by an institutional review board and all subjects portrayed or their health care proxies have granted their consent for filming.
2 See, for example, A. E. Volandes, L. S. Lehmann, E. F. Cook et al., "Using Video Images of Dementia in Advance Care Planning," Archives of Internal Medicine, April 2007 167(8):828–33; A. E. Volandes, G. H. Brandeis, A. D. Davis et al., "A Randomized Controlled Trial of a Goals-of-Care Video for Elderly Patients Admitted to Skilled Nursing Facilities," Journal of Palliative Care Medicine, published online May 4, 2012; and A. El-Jawahri, L. M. Podgurski, A. F. Eichler et al., "Use of Video to Facilitate End-of-Life Discussions with Patients with Cancer: A Randomized Controlled Trial," Journal of Clinical Oncology, Jan. 2010 28(2): 305–10.