Angelo Volandes, M.D., said he first saw the need for tools to educate very sick patients about end-of-life issues when he was a resident.
He was admitting a patient to the hospital who had wide-spread metastatic cancer. A highly educated English professor, she seemed to have no idea about how to make the difficult decisions that would soon face her.
He got her in a wheelchair and took her to the ICU, where she saw a patient on a ventilator and, by chance, another patient who coded and needed CPR to revive him.
The encounter made Volandes understand the power of patients being able to see for themselves. “Within a few seconds she was able to understand what even the best communicators, the best doctors might take a couple of hours to explain. That is the power of images,” he said.
Research and a non-profit company
Over the last 15 years, Volandes and his wife, Aretha Delight Davis, M.D., J.D., have been running a large research group out of Harvard Medical School and Massachusetts General Hospital to help empower patients to receive the medical care they want. The research group includes about 300 clinicians from 28 medical centers and has received some $40 million in National Institutes of Health funding. Their studies show that when patients with a serious illness have a video to help them better understand their options, more tend to choose comfort-oriented care, he said.
“It’s no surprise. Most patients don’t want to die in a hospital with a tube shoved down their throat in the ICU," he said.
Videos, the studies show, are what patients want rather than reading a pamphlet or deciphering a complicated advanced directive form. Providing informational video decision aides helps patients feel empowered. “At the end of the day, the healthcare system is not a level playing field,” he said, but patients should not have to rely on having a physician who is willing to talk about end-of-life issues in deciding their care options.
Volandes and Davis, who is both a physician and attorney, started the non-profit company Advance Care Planning (ACP) Decisions, based in Massachusetts, that creates videos that are evidence-based, end-of-life decision aides. The company has more than 300 videos in 22 languages including Spanish, Vietnamese, Navaho and Somali. They range from straight-forward discussions of advanced heart disease and dementia to CPR and advanced directives.
“At this point, our library covers every single decision point in the healthcare system where there’s a shared-decision encounter between a patient or family member and a clinician,” he said.
A partnership with Aetna
Now the small, nonprofit company has partnered with Aetna, the insurance giant, using the videos to train nurse case managers in three states and help educate patients.
By exposing Aetna members with serious illnesses to the videos, they hope to jumpstart the end-of-life planning conversations that they might otherwise not undertake.
The videos are a start-up for having conversations that many doctors find difficult, said Davis, who is CEO of ACP Decisions. Aetna is piloting the program in Pennsylvania, Maine, and Illinois.
“It’s really an exciting opportunity,” she said, with the goal of improving patients’ quality of care. For instance, for some patients, it may be the first time they heard the word hospice or learn about assisted living.
Aetna got interested in the videos after one of its doctors heard Volandes give a talk. The partnership with ACP Decisions was a good fit as Aetna has run a Compassionate Care program for the past 15 years, Daniel Knecht, M.D., Aetna's vice president of health strategy and innovation, told FierceHealthcare.
‘It makes so much sense. It’s so simple and effective,” Knecht said, about the decision to partner with the company to help train its Medicare case managers to use the videos.
It’s a natural expansion to Aetna's Compassionate Care program, which supports people with advanced illness by giving them access to hospice care earlier and allowing people to continue receiving curative care while in hospice. Under the program, nurse case managers receive special training in advanced illness and palliative care issues.
The videos are one more way to get conversations going. “Anecdotally, we’ve been very pleased with the program,” he said, as the videos augment the case managers' ability to communicate with members about some difficult topics.
Ultimately, Aetna and ACP Decisions will measure success by looking at factors such as hospice use, inpatient admissions. and the completion of advanced care directives.
Roughly 30 case managers have been trained so far, a number that is growing every week, Knecht said.
Aetna is also about to launch a sub-pilot in Maine to provide training directly to physicians about having end-of-life conversations with patients. Knecht said he trained at Mount Sinai in New York City, where there is a large focus on palliative care, but not all doctors are as lucky. “A lot of my physician colleagues didn’t receive substantial formal training as it relates to having these difficult conversations around advance care planning,” he said.