inewsource discovered and exposed a world — little known even within the medical field — where more than 4,000 people are kept alive on machines. Reporter Joanne Faryon and videographer Brad Racino revealed network of “vent farms” to the nation through documents, data and unprecedented access to a facility in San Diego County that is home to people spending years, sometimes more than a decade, on life support.
Most are not conscious and haven’t tasted food in years. They are dependent on others to brush their teeth, comb their hair and change their diapers. More than 120 such places in California exist. They are the end of the line, the place people go once medicine has saved them, but where there is little hope for recovery. This inewsource investigation, called “An Impossible Choice,” posed the point-blank question faced by an increasing number of people across the country: When is a life no longer worth living?
“An Impossible Choice” was the first to examine this population — largely thrust into these circumstances by accidents or medical catastrophes that leave their lives in the balance. Most often their medical wishes are not known, which means loved ones are forced to make decisions about how they will live. This investigation was grounded in data to document costs, diagnoses and length of stays.
Costs are extraordinary.
Medi-Cal, California’s program for the poor and disabled, pays for almost all of this care, as much as $900 a day for each person, some $634 million in 2013, nearly double what it was ten years ago. Subacute units, housed within skilled nursing facilities, are almost all for-profit operations that have reaped profits as high as 24 percent in recent years. States account for this population in many ways, which makes comparisons difficult, but limited nationwide data showed that on a given day, about 13,000 people, or 1 percent of nursing home residents, fall into this category because they are kept alive by a ventilator or tracheostomy and a feeding tube. One-fifth are in California.
“An Impossible Choice” examined a subject that affects everyone — how we choose to live and die — and because it was so important yet challenging to talk about, we needed to deliver this material in as many ways as it is possible for people to receive information. We opted for creating a discrete website and presented the material in written narratives, radio stories, video vignettes, graphics, a survey, a Q&A with medical experts, a 10-minute mini-documentary, and an animated storybook that could easily be shared on social media. While the data was compelling, this project would not have resonated without the three families who opened themselves to inewsource and without the candor and compassion of the medical staff at Villa Coronado, the nursing home unit that agreed after lengthy negotiation to give access to a reporter and photographer.
Reporting and producing “An Impossible Choice” demanded almost daily ethical decisions.
Faryon recalls a quintessential moment in her reporting:
One night when I stayed late at the nursing home. I wanted to spend more time observing Rafaela, the woman who had been in a semi-vegetative state for more than four years. I sat in a chair in her room, counting the number of times the dial on the feeding machine turned every minute, recording the sounds of the machines that were keeping her alive, and watching the expressions on her face – did she know, could she know, I was there? The awesomeness of our responsibility to preserve her dignity, yet be truthful in our storytelling, became clear in that moment.
The series, which included a segment on PBS Newshour, stimulated a national discussion about end-of-life conversations. We received emails from academics who wanted to use the project to aid in their classroom discussions, from medical researchers who were exploring end-of-life topics, and from ordinary people who wanted to share their own personal story about making the difficult decision of when to let go or do everything medically possible. Finally, in April 2015, inewsource worked with Sharp Healthcare to put on a public forum to discuss end-of-life decision-making.
“An Impossible Choice” took nine months to report and produce, a major commitment for a small, 5-year-old nonprofit with four full-time reporters. But when inewsource reporter Joanne Faryon came to Editor Lorie Hearn in 2013 with reports of places called “vent farms,” we knew this was a world the public needed to know about and understand.