Dementia video leads patients to choose less aggressive care

The video is short, simple, and powerful.

A woman with advanced dementia -- wearing lipstick, beads and a white shawl -- stares blankly at the camera while her daughters ask her questions. A man's voice describes what she and others at this stage cannot do: communicate, walk or sit alone, feed themselves. She does not respond when her daughter asks her how many daughters she has, and she needs help to keep her spoonfuls of pureed food in her mouth.

Less than two minutes long, the video was shown to almost 100 elderly people taking part in a study comparing the effects of watching the narrated video of advanced dementia with listening to the verbal narration alone. Just over 100 other participants heard the narration. Both groups were then asked to choose what kind of end-of-life care they would want if they were in the same irreversible condition.

People who viewed the video were more likely to choose comfort care over life-extending measures than people who heard a verbal description alone, Dr. Angelo Volandes of Massachusetts General Hospital and his colleagues report in the British Medical Journal. Those who saw the video were also more knowledgeable about the disease, and more of them remained firm in their choice of end-of-life care six weeks after seeing the video.

"Most of our patients do not have experience with advanced stages of disease nor with the interventions such as CPR," Volandes said in an interview. "Video may be one way of better informing patients about decisions at the end of life. Video makes these conversations quite real."

The study, conducted among outpatients over 65 at Boston Medical Center, Mass. General, and a clinic of Brigham and Women's Hospital, grew out of the increasing involvement of patients in end-of-life care decisions. The choices presented to the study participants were life-prolonging care through such means as cardiopulmonary resuscitation or mechanical ventilation to breathe; limited care including admission to a hospital and taking antibiotics but no CPR; and comfort care, whose goal is only to relieve symptoms.

In the video-viewing group, 86 percent chose comfort care compared with 64 percent in the verbal narrative group. After six weeks, 6 percent of the video group people changed their preferences compared with 29 percent of the verbal-narrative group.

Rigney Cunningham, executive director of the Hospice & Palliative Care Federation of Massachusetts, was not surprised.

"I think when people really see what advanced illness looks like, it really causes them to make different choices," she said. "We spend a lot of time on advanced care planning and we are also struggling with how to help people make an informed choice. This is one tool."

To Volandes, the goal is a better informed patient, not one choice over another.

"For me the correct answer is the answer the patient gives me when they are fully informed to make the decision," he said. "We found people had more knowledge when they saw the video."