Viewing a video showing a patient with advanced dementia interacting with family and caregivers may help elderly patients plan for end-of-life care, according to a study led by Massachusetts General Hospital (MGH) researchers.
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In their report in the journal BMJ, the investigators found that participants who watched such a video in addition to listening to a verbal description of the condition were more likely to indicate they would choose only comfort care if they developed advanced dementia and also said they felt the video was helpful to their decision-making process.
“Decisions at the end of life can be complex and abstract; the video makes it real,” says Angelo Volandes of the MGH Department of Medicine, the study’s lead author and an instructor in medicine at Harvard Medical School. “Patients may not have experience with conditions like advanced dementia or the medical interventions involved, other than what they have seen on television or at the movies. Videos of real patients can offer more realistic images.”
Asking patients about their preferences for treatment in situations they may face in the future is an essential part of quality care, the authors note; but giving patients a clear understanding of the options they are considering and making sure that messages delivered by different health care providers are consistent can be challenging. Terms that have a specific meaning to medical professionals may be interpreted very differently by the general public.
To give patients a clearer idea of what advanced dementia involves, the research team developed a decision-support tool combining a standard verbal description of advanced dementia – including the fact that patients with the condition cannot move about independently, eat by themselves, or communicate with others – and a two-minute video of an 80-year-old dementia patient that clearly shows her inability to walk, to eat, or to communicate with family members.
While the system had been evaluated in a previous study involving middle-age participants, it had not formerly been tested in older individuals or in a way that allows comparison to verbal explanation only.
The current study enrolled 200 patients from four primary care or geriatric practices in the Boston area. Participants were 65 or older and had no significant cognitive impairment, based on a standard test of mental functioning. After an initial introductory interview – which included gathering basic demographic and personal health information, along with assessment of their knowledge about dementia – about half the participants listened to a narrative describing advanced dementia and then watched the video.
The other participants, the control group, only heard the narrative description. Then all participants had a second interview that included asking their preferences for the type of care they would prefer to receive if they developed advanced dementia – the options being care designed to prolong life at all costs, limited care designed to maintain physical functioning, and comfort care focused on relieving pain and maximizing comfort.
Among the control group that only heard the narrative description of advanced dementia, 64 percent of participants indicated they would choose comfort care, 19 percent limited care, and 14 percent life-prolonging care. Among participants who also viewed the video, 86 percent said they would choose comfort care, while 9 percent would choose limited care and only 4 percent indicated life-prolonging care. Most participants were contacted six weeks later and again asked about their care preferences, and while 29 percent of the control group indicated a change, only 6 percent of those viewing the video had changed their preferences.
“We also asked those who watched the video about their response to it, and the vast majority said they found it to be helpful, were comfortable watching it, and would recommend it to others. We want patients to be as informed as possible when making decisions at the end of life but not coerce them or unduly influence them in any manner,” Volandes explains.
“Since projections indicate that more than 13 million patients will develop dementia by 2050, it is critical that patients understand their options for end-of-life treatment and be able to communicate their preferences to their physicians,” he adds. “Using videos in patient-doctor discussions is new, so we need further work and studies before the use of videos like this can become a standard part of clinical care.”
Co-authors of the BMJ study are Michael Barry, Kenneth Minaker, Yu Chiao Chang, and Areej El-Jawahri, MGH; Michael Paasche-Orlow, Boston University School of Medicine; Muriel Gillick, Harvard Medical School/Harvard Pilgrim Health Care; Francis Cook, Brigham and Women’s Hospital; Elmer Abbo, University of Chicago; and Susan Mitchell, Hebrew SeniorLife, Boston.
The study was supported by grants from the Foundation for Informed Medical Decision Making, the Alzheimer’s Association, and the Hartford Foundation.