An Impossible Choice: Deciding When A Life Is No Longer Worth Living
This is the first of a two-part series
It was the fifth time Rafaela’s feeding tube clogged, on the fifth consecutive Friday, that drove Steve Simmons to threaten to bring a shotgun into the nursing home.
He hadn’t been to work in the five months since their accident in Carlsbad. He’d lost 30 pounds, and every day he spent hours by his wife’s bedside. Some days, he never left.
The chalky liquid in the tube, known as the “feed,” hardens like concrete if it isn’t in motion. Rafaela would have to be fed through a tube down her nose until doctors could insert a new one into her abdomen the following Monday. Steve couldn’t bear to watch another time.
Looking back, he believes he only intended to shoot himself.
“What I really meant was, ‘I’m going to come in here and blow my brains out in front of all of you. Because I can’t endure any more of this,’” Steve said.
Rafaela, 55, is severely brain injured. For the past four years, she has been kept alive with a feeding tube in her stomach and a breathing tube in her throat. She can’t walk or talk. It’s unlikely she knows who or where she is.
She is one of 4,000 men, women and children kept alive with machines in special wards in California’s nursing homes. On the books they’re called subacute units. But among some doctors, they’re known as “vent farms,” shorthand for the ventilators that keep so many of the residents breathing.
The units are the end of the line, the place people go once medicine has saved them, but there is little hope for recovery.
The state of California created them more than 30 years ago to get life-support patients out of more expensive hospital beds. Now 125 subacute units operate across the state. Fourteen are just for children.
Medi-Cal, the state’s program for the poor and disabled, pays for most subacute care — as much as $900 a day. Last year, the total cost came to more than $636 million, almost double what it was in 2004.
While the cost is considerable, the human toll is staggering. Most people on these units will spend the rest of their lives in bed, their bodies twisted from muscle contractures, tubes permanently inserted in their throats and stomachs, completely dependent on others to brush their teeth, comb their hair and change their diapers.
And there is the grief — heartless and relentless — of the loved ones left behind. Hoping for a miracle in the face of a grim prognosis, circumstances cajoling them into magical thinking, they stand by the bedsides of wives and husbands, fathers and daughters, waiting.
“She is my wife,” Steve said. “I’m not going to desert her in her time of need.”
The number of people kept alive by artificial means has nearly doubled in the past decade, with advances in medicine now able to save people who years ago would have died. Doctors, sometimes afraid of lawsuits or pressured by families, are providing heroic treatment to people who have no chance of getting better. These doctors aren’t always paid to have, nor are they always willing to have, the difficult end-of-life discussions that a few years ago took on the politically charged name of death panels.
The default in the system is to keep people alive at all cost — it won’t let you die without your written permission.
Health care administrators and doctors say if the government weren’t paying the bill, so many people wouldn’t be living this way for so long — in some cases, for more than a decade.
An inewsource reporter and a photographer got a rare look inside one of the largest subacute units in California, observing for many days over a period of months.
Here, emotion and dispassion collide, and basic questions of our existence intersect: how we choose to live and how we choose to die.
And, significantly, who will make that choice?
To read more about Steve and Rafaela and to participate in the conversation about end-of-life issues, go to impossiblechoice.org. There, you can consult with medical experts, share your experiences, visit a subacute unit through videos and learn how this project came about.