Video Eases End-of-Life Care Discussions
Comfort care, advanced care planning, glioma. (Definitions of many terms related to cancer can be found in the Cancer.gov Dictionary.)
Patients with malignant glioma who watched a video that depicts options for end-of-life care were more certain of their end-of-life decision making than patients who only listened to a verbal narrative. Patients who watched the video were also more likely to choose comfort care over aggressive medical care for their end-of-life care preferences.
Journal of Clinical Oncology, November 30, 2009 (see the journal abstract). (J Clin Oncol. 2009 Nov 30. [Epub ahead of print])
Most patients with cancer do not complete advanced care planning documents, also called advance directives or living wills. These documents state what type of care patients wish to receive at the end of their lives, a time when patients often cannot speak for themselves.
End-of-life care falls into three general categories:
- Life-prolonging care, which includes extreme measures such as cardiopulmonary resuscitation (CPR) and the use of mechanical ventilators (machines that keep a patient breathing).
- Basic medical care, which includes medicines for infections or other treatable problems but does not include CPR or the use of mechanical ventilators
- Comfort care, which aims to keep patients pain free and relieve their symptoms but does not include life-prolonging treatment or medications for infections or other treatable conditions.
Studies have shown that patients with advanced cancer wish to be involved in planning their end-of-life care. However, such discussions can be hampered by poor communication between physicians and patients and by the fact that patients often do not understand complex medical terminology, which limits informed decision making.
Researchers enrolled 50 patients with malignant glioma (a type of brain tumor) into a randomized clinical trial testing whether a video depicting end-of-life treatment options would help patients make informed decisions. Malignant glioma was chosen because it affects people in a relatively wide range of ages. In this trial, the patients were between 32 and 77 years old.
The researchers randomly assigned patients to a verbal explanation group (27 patients) or to a video group (23 patients). Patients in the verbal explanation group listened to a verbal narrative describing the three categories of end-of-life care and the limitations of each type of care (for example, that CPR does not work for most patients with advanced cancer, or that comfort care usually does not include readmission to a hospital). Patients in the video group listened to the same verbal narrative and then watched a 6-minute video that included the same narrative matched to visual images of the care being described.
Each patient's preference for type of end-of-life care was recorded after exposure to the narrative or video, as was as their willingness to undergo CPR. The researchers also asked about their understanding of the types of care described and their comfort with the video experience.
The study's principal investigator was Angelo Volandes, M.D., internal medicine physician at Massachusetts General Hospital. Funding was provided by the Foundation for Informed Medical Decision Making and by the National Institute on Aging.
Before the start of the study, eight participants in the verbal narrative group said they were willing to undergo CPR, 14 declined, and five were uncertain. These numbers remained similar after listening to the narrative (11 agreed and 16 declined). Before watching the video, eight participants in the video group said they were willing to undergo CPR, 11 declined, and four were uncertain. After watching the video, only two were willing to undergo CPR and 21 declined.
After listening to the verbal narrative, seven people in the verbal narrative group preferred life-prolonging care, 15 preferred basic medical care, and six preferred comfort care. After watching the video, no participants in the video group preferred life-prolonging care, one preferred basic medical care, 21 preferred comfort care, and one was unsure of his preferences. Participants in the video group reported a larger increase in knowledge of the medical interventions being discussed.
All of the patients who watched the video reported being "very" (83 percent) or "somewhat" (17 percent) comfortable with the experience and said they would definitely (83 percent) or probably (17 percent) recommend the video to other patients with cancer facing similar decisions about end-of-life care.
"One of the most important things that we found was that patients were overwhelmingly comfortable viewing the videos. I think that physicians often have difficulty talking about end-of-life care, but what we're finding is that patients want to educate and empower themselves as much as they can to make these decisions," said Dr. Volandes.
"Often when people choose these end-of-life interventions, I fear that they're being misinformed about the reality of what these medical interventions provide. What video does is provide them with an accurate picture of the clinical reality. We want to move beyond just having our patients tell us what they want: we want to make sure that they have all the information required to make an informed decision," he explained.
"When you have these difficult conversations with patients, it's not just about what they want and how they feel - the psychology of this devastating disease. We have to teach patients, because even at the end of life, there are pieces of knowledge that they need in order to make informed decisions," agreed Ann O'Mara, Ph.D., R.N., head of Palliative Care Research in NCI's Community Oncology and Prevention Trials Research Group.
The video group in this trial was exposed to repetition of the same information (through both the verbal narrative and the video), which could have potentially contributed to their increase in knowledge. However, Dr. Volandes doubts that repetition itself played a role. "Patients told us 'I heard you, but I didn't understand you. Once I saw the pictures, I understood what you meant by those words,'" he explained.
The study was also small and included primarily white, well-educated patients with a single type of cancer being treated at a single teaching hospital. Therefore, the results cannot be generalized to other groups of patients. The researchers are beginning a large multicenter study in 2010 that will test use of the video in a diverse group of patients with different types of cancer, from both rural and urban hospitals.
Editor's Note: Results from the larger multicenter study (in which the verbal explanation and the video discussed CPR only) were published December 10, 2012, in the Journal of Clinical Oncology. The researchers found that fewer patients who watched the video (20 percent) wanted CPR, compared with patients who listened to a verbal explanation (48 percent). When patients were contacted 6 or 8 weeks later and asked again about their preferences, the percentages who wanted CPR remained about the same. “This trial suggests that videos are an important tool to enhance patients’ decision making by making sure patients understand CPR and are able to express their preferences at the end of life,” the authors concluded.