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Videos aim to clarify tough choices on end-of-life care

Signing out the kind of care you want can help your family make the right medical decisions when the time comes.
Signing out the kind of care you want can help your family make the right medical decisions when the time comes.

It happens time and again on television medical shows: patients in the clutches of death revived through cardio-pulmonary resuscitation administered by handsome, hero doctors.

But in real life, CPR isn’t nearly as successful.

In fact, for those with advanced terminal illness, the success rate is quite slim, experts say.  Other common medical interventions also often prove to be more painful than effective for elderly and frail patients.  

And while most Americans say when asked that they don’t want such aggressive interventions at the end of life, these procedures remain the standard of care throughout the U.S.

"That misalignment between type of medical care that Americans want and the type they end up getting is one of the most urgent problems in American health care," says Dr. Angelo Volandes, an internist and researcher at Harvard Medical School and founder of ACP Decisions, a non-profit that produces videos about end-of-life treatment options and care. 

Volandes realized there was a need to better educate patients after a conversation he had with a woman who was dying of cancer.  He asked her about the type of end-of-life care she had chosen for herself.

"And she gave a kind of blank stare," Volandes says. "Clearly no one had spoken to her about her preferences for care at end of life."

So he took the patient on a field trip of sorts - to a hospital intensive care unit.  While there, a code blue sounded and doctors began performing CPR on a dying patient.

"When we went back to her room she looked at me and said, 'Angelo, you know I understood every single word that you said before …but I had no idea that’s the sort of thing you were talking about.'"

And that’s when Volandes came up with his idea to create simple videos three to seven minutes in length featuring his wife, Dr. Aretha Delight Davis, slowly and deliberately explaining common end-of-life interventions.  Volandes says he took care to make sure that the more than two dozen videos are "values neutral."

"In other words, the videos don't have an agenda," Volandes says. "They're not trying to skew people one way or another. What we're trying to do is provide information."

An excerpt from an ACP Decisions video

In a video that explains the three levels of care available to those with advanced diseases, viewers learn the differences among comfort care; limited medical care and the  "do-everything" life prolonging approach. That latter category means agreeing to CPR if they wind up needing resuscitation and agreeing to having a ventilator if they can’t breathe on their own.

"This involves putting a tube  down your throat into your lungs and connecting you to a machine that pushes air into your lungs," Davis, clad in a lab coat, tells viewers. 

On the screen a metal instrument and plastic tube is inserted into the mouth and throat of a mannequin to show what a human patient would experience.  The scene then cross-fades into a real intubated patient lying unconscious in a hospital bed, machinery all around him.

 "You cannot eat or talk while on this machine," Davis says. 

The videos are not available for stand-alone viewing by patients or the public.  Instead, they’re made for health care facilities that pay to use them and, if they choose, to get to get training in by ACP Decisions in end-of-life conversations. 

So far, more than 40 health care systems nationwide, including Kaiser Permanente and Sutter Health in California, have been testing the videos.

"The video to me is one of the best tools ever," says Ellen Stirling, a registered nurse who has been showing the overview video to patients in twice-a-month workshops held at two facilities in Palo Alto, near San Francisco.  It’s part of a two-year-old pilot program offered by the Palo Alto Medical Foundation, an affiliate of Sutter Health.

Ellen Stirling shows a nursing home patient one of the videos.                    Stephanie O'Neill/KPCC

"When I’m talking about the possibility of CPR causing broken ribs… they actually can see that," she says. "So they see CPR, they see what intubation means, they see being in an ICU - not being able to talk, getting all these medications."

Stirling also says it's important to designate a family member or friend to watch the videos as well. 

Michael Nagasaki of Hawaii, who cares for three elderly relatives in their 90s, recently watched several of the videos as part of a statewide program that’s bringing them to every major hospital and skilled nursing facility in the state. They helped clarify choices for his elderly mother, aunt and uncle, he says, adding that the videos offered him relief as well:

"It takes the whole burden off of you," he says. " You don’t feel regret that you kept them alive or regret that you let them go."

Surveys of patients in Palo Alto and elsewhere in the nation show that almost 90 percent who watched the videos say they would recommend them to others.  And randomized trials by Volandes' group suggest those who watch the videos are more likely to forego aggressive end-of-life measures  than are those who receive just verbal explanations of their choices. 

In a 2012 study of 101 nursing home patients published in the Journal of Palliative Medicine, 33 percent of  those who received verbal explanations of end-of-life choices said they wanted more aggressive "life prolonging" care, while 57 percent chose the least invasive option, dubbed "comfort care."

By contrast, only 12 percent of those who watched a video about their options chose the "life prolonging" care, while 80 percent opted for "comfort care. "

"If a picture is worth a thousand words," Volandes says, "a video is worth a hundred thousand words."