This study presents an innovative video approach to ACP for patients with cancer. When faced with the possibility of their cancer progressing, participants with malignant glioma who viewed a video of the various goals-of-care options in addition to listening to a verbal description were more likely to prefer comfort measures and avoid CPR, were more knowledgeable regarding the subject matter, and were more certain of their decision when compared to patients only hearing a verbal narrative. In addition, the participants who viewed the video were comfortable watching the images, found the video to be helpful, and stated that they would recommend it to other patients with cancer.
To the best of our knowledge, this study represents the first randomized controlled trial looking at the usefulness of a video to facilitate ACP discussions for patients with cancer. Our findings are consistent with previous investigations looking at the utility of a video depicting the health state of advanced dementia to assist healthy older people in deciding on their preferences for end-of-life care if they were to develop advanced dementia. In the dementia studies, patients viewing the video showed improvement in their overall knowledge, had decreased uncertainty about their decision, and were also more likely to prefer comfort care.16–18
This work extends and builds on these studies by demonstrating the efficacy of the video support tool to discuss ACP for other life-threatening illnesses, such as cancer, and to visualize not just disease states but also possible treatment options. Most importantly, this work succeeds in showing the efficacy of this approach in patients with advanced cancer, where medical decision making is less hypothetical.
Our findings are also consistent with prior studies of ACP in cancer. Previous work has demonstrated that end-of-life discussions are associated with avoidance of CPR and mechanical ventilation near death and with earlier hospice referrals.25,26
These findings suggest that when patients have a better understanding of their goals-of-care options and the likely outcomes, they tend to opt for less aggressive medical care at the end of life, which is consistent with our results.
Physicians have consistently reported difficulty approaching end-of-life discussions and providing prognostic information regarding utilization of CPR in patients with advanced cancer.3,8,9
Physicians often underestimate the emotional resilience of patients and their desire to be involved in this decision-making process.3,8,9
Our participants have further confirmed this resilience.
Our study has several important limitations. First, the research staff was not blinded to the random assignment, which could have introduced bias. We utilized structured interviews and outcome measures, and a verbal script that was followed verbatim to reduce this bias. Second, this is a small pilot study with a sample size of 50 participants with malignant glioma, who were primarily white, well-educated, and drawn from clinics at one teaching hospital. Thus, our findings are not generalizable to minority groups, less-educated patients, patients in other geographical areas, and patients with other cancers. Third, despite random assignment, there were some baseline differences between the two groups that could have confounded our results, which can be expected in a relatively small sample. Fourth, the repetition of the verbal narrative in the video group (listening to the verbal narrative followed by the video with an identical narrative) could have potentially influenced the knowledge assessment results, but it would not fully explain the difference in distribution of preferences between the two groups. The purpose of the video is to reinforce the physician-patient discussion (simulated by the initial oncologist's introductory discussion of the topic and the verbal narrative). Hence, we considered this repetition an integral aspect of the intervention. Finally, an emotional response to the video could have influenced participants' preferences. To ensure that the video was not biased toward any particular perspective, the video content underwent extensive scrutiny by numerous oncologists, intensivists, palliative care physicians, and ethicists with particular expertise in this field. Participants' comfort level with the video is also reassuring against this possibility.
Previous uses of video decision support tools have traditionally focused on helping patients make treatment or screening decisions.27
Our use of video brings a novel approach to initiating end-of-life discussions. Video images could help patients visualize hypothetical goals-of-care options, discuss the likely outcomes, and make an informed decision regarding what is concordant with their preferences. Future work should focus on conducting larger randomized trials on the efficacy of the video in different patient populations with various cancers and various levels of prognostic uncertainty, determining the optimal timing for patients with cancer to view the videos, and integrating the underlying illness trajectory and prognosis in this discussion.
Involving patients with cancer in ACP empowers them by respecting their autonomy and offering them the relevant medical information to make informed decisions. Using video images to educate patients on various end-of-life interventions and outcomes is palatable to patients, leads to more informed decision making, and may potentially lead to higher quality end-of-life care.