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Deciding When a Life is No Longer Worth Living

by Joanne Faryon

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. 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?

The Unit

For more than two miles, the Coronado Bridge snakes its way across the San Diego Bay, stretching across spectacular scenery: the Navy shipyards to the south, sailboats and sandy beaches to the north. On the other side of the bridge is the city of Coronado, one part resort and one part military town, where armed Navy personnel stand guard at the southerly edge of one of the most stunning beaches in the country.

The Villa Coronado Skilled Nursing Facility is just a right, left, and right turn after the bridge, part of a larger complex run by Sharp Healthcare.

Subacute 2, one of Villa Coronado’s two life-support units, is housed in an old wing of the small hospital. It’s a 1949 single-story brick building surrounded by gingerbread-trimmed homes and porch swings.

From the inside looking out, an occasional car drives by, a woman cuts across the lawn with a dog on a leash, tree branches nod to the breeze blowing off the bay, some 400 yards away. It’s a panorama of ordinary life out of reach for nearly everyone on Subacute 2.

It’s morning, and there’s a steady flow of nursing assistants.

Some are wheeling green oxygen tanks to and from rooms; others carry the bags of liquid feed marked “fiber source.”

Fresh linen is piled at each bedside waiting for the team of workers to lift and roll in tandem. The smell of dirty diapers mixes with what might be lavender from the aromatherapy in the multipurpose room down the hall.

On this day in May, there are 62 men and women living on Villa Coronado’s two life-support units. Most are here because of brain injuries from car and motorcycle crashes, falls, fights and strokes.

Some people have chronic progressive illnesses. Often it’s ALS. One 54-year-old woman born with severe cerebral palsy has lived here for 10 years.

The average age of people who live in subacute care is 56.

Some live on these wards well over a decade. The healthier the heart, the longer they survive.

Down the hallway, the doors to the rooms are all open. It’s hard not to stare.

The old woman …Her thin skin stretched tightly across her cheekbones, her mouth open as if locked in a scream …

Men in their 20s and 30s and 40s… Three to a room, three feet apart … Light blue tubes tethering humans to machines …

The TVs are on. SpongeBob, Mexican soap operas, a boxing match … No one is watching. Their eyes — some open, some closed — face the ceiling.

Most of the people here are in a vegetative or unresponsive state. That means they don’t react to people or stimuli. Touch. Sound. Smell. They have not tasted food in years.

They spontaneously smile and cry. It’s a cruel trick of the brain stem. To families, it looks like emotion, but doctors say most of the time, it’s a reflex.

There is a constant hiss from the oxygen equipment, like when an air mattress is slowly deflating. It’s punctuated by a choking-gurgling sound. A healthy person clears mucus by swallowing or coughing. For people with a tracheostomy — a breathing tube in their throat — the mucus gets trapped in their lungs. It has to be suctioned several times throughout the day.

The procedure is life-saving. A plastic tube, about the diameter of a pencil, is hooked to a small vacuum-like device, and then placed deep into the tracheostomy hole in the throat.

“Rafaela, we’re going to do trach suctioning,” the nursing assistant says as she reaches for the plastic tube on the wall behind the bed. It’s routine for staff to talk to the residents even though almost no one can answer back.

Rafaela’s body jolts up as the thin tube is inserted more than an inch into her windpipe. She makes a sound as though she is gasping for air.

To keep reading, click here…

Watch the PBS NewsHour version

To listen to the radio series and see more video click here….

More Families Hope Man On Life Support For 15 Years Is Their Lost Loved One

An unidentified man, only known as Sixty-Six Garage, is a resident at Villa Coronado Skilled Nursing Facility, Feb. 5, 2015.

He smiles back at a reporter as she smiles and mouths the word “hello.” It’s an expression that belies both his official mental status — he’s believed to be non-responsive — and his circumstance. He has been lying in a nursing home bed for 15 years with a feeding tube in his stomach and a breathing tube in his throat.

Sixty-Six Garage, the random name he was given when he arrived at the UCSD Trauma Center in San Diego in 1999, is a John Doe who has been kept alive with machines since the vehicle he was traveling in crashed near the U.S.-Mexico border.

He can’t speak. Or walk. His atrophied limbs, his round face and his large brown eyes give him a child-like appearance, as though he’s been frozen in time. He couldn’t have been more than a teenager when he was thrown from the car, suffering a catastrophic brain injury.

Since inewsource made his story public late last year, at least a dozen families have come forward laying claim to Garage.

There was a desperate call to a reporter from a man on behalf of his wife — “She thinks it may be her son.” And a photocopy of a driver’s license with a handwritten note about a brother who went missing around the same time Garage was found, dropped off at the emergency room of a Sharp Hospital. Sharp HealthCare runs the Villa Coronado Skilled Nursing Facility, the place Garage lives.

And then there were two women who drove 100 miles from Riverside to Coronado to meet with Ed Kirkpatrick, the director of the nursing home, while their mother was on the phone in Nicaragua. So desperate to believe he might be her missing child she was attempting to arrange for a travel visa to the United States just to see him.

Others have called. Does he have a tattoo on his arm? He doesn’t. A birthmark on his back? None. A three-inch scar on his face? Only the large one across the left side of his head — from the accident that brought him to this place.

They have a “brief glimpse of hope,” Kirkpatrick said, that Garage may belong to them.

It’s a painful paradox to hope Garage – a man who needs 24-hour care, who cannot eat, who requires the mucus from his lungs be suctioned through a tube at least six times a day — is their son or brother. But like the mother on the phone from Nicaragua, these family members have been waiting more than a decade to know whether a son, or brother, is alive.

The Border Patrol reports that hundreds of migrants are found dead every year along the U.S.–Mexican border.

Many are never identified, according to the Colibrí Center for Human Rights in Arizona. The center attempts to identify remains and reunite them with their families. It has a database of 1,500 missing people last seen near the border.

report last year by the International Organization for Migration estimated there were 6,029 deaths at the border between 1998 and 2013.

Enrique Morones, founder of Border Angels, a San Diego-based human rights group which provides aid and advocates for migrants, believes the actual number is much higher.

Morones said his group often finds bones in the desert. And he hears so many stories of missing people — the ones no one is accounting for. He often asks groups he speaks to in Mexico how many have lost a friend or loved one at the border.

“At first (years ago) it was a smattering of hands that would go up. Now there’s a smattering of hands that don’t go up,” he said. To keep reading click here.

To listen to the radio version, click here.

To listen to the radio version of this story click here.

Monday, August 19, 2013

By Joanne Faryon inewsource

SAN DIEGO — Mello-Roos taxes, paid by homeowners in new developments, are a virtual ATM for the Poway Unified School District. The District has accumulated so much surplus in these special taxes it spends some of the money in neighborhoods that pay no Mello-Roos at all.The district pays for everything from a garbage disposal to catered lunches to a $49,000 three-day planning meeting. It even bought a multi-million dollar administration building and furnished it using Mello-Roos money.There is no legal limit and no standardized formula for calculating Mello-Roos Taxes. In some cases, the formulas are so convoluted that homeowners have virtually no way of knowing whether they’re paying the correct amount.What’s more there is no state oversight over the funds: at a minimum, the system is far from transparent to those who are footing the bill. Some are asking whether it’s even legal.“We’re not going to engender support for our schools from the broader community if we’re misusing their funds,” Poway School Board Trustee Kimberley Beatty told inewsource. For the full story click here.

Mello-Roos: The Tax You Choose

An inewsource investigation reveals homeowners over and undercharged on their Mello-Roos tax bills.

When Does End Of Life Begin: Hospice Under Scrutiny

To listen to the audio version, click here.
Tuesday, February 5, 2013 By Joanne Faryon

The story of how LC Sallis got his name is pretty simple, according to his wife Betty. The initials L and C are short for Loreen and Cecile, the names of the two nurses in attendance at LC’s birth, nearly 90 years ago. It’s a story that still makes LC chuckle, though he and his wife Betty have surely told it many times to new friends and curious visitors. But LC is running out of chances to tell the story of his birth.

He’s dying.

He has stage four heart failure, the final stage in congestive heart disease, a malady so common it accounts for almost half of all deaths among elderly Americans.

“He can’t go much farther with much more fluid and his heart is going to fail, his pump is going to fail, his lungs are going to fill up with fluid. He’ll have an arrhythmia or heart attack and his body will die,” LC’s doctor, Daniel Hoefer, says.

Eighty-nine year old LC Sallis has stage four congestive heart failure. He passes the time sitting on a recliner watching television in his San Diego home.

People with LC’s condition account for the majority of hospitalizations of people over 65, but LC has not been to an ER in two years.

Instead, he’s chosen hospice care – a type of care for people with less than six months to live. LC joins a growing number of people choosing to die at home, willing to forfeit conventional “curative” treatment in exchange for pain management and comfort care. For the vast majority of patients, hospice is paid for by Medicare.

In 2010, of all the people who died and received Medicare benefits, 44 percent chose hospice, double the number in the past decade. But while the number of hospice patients doubled, the cost quadrupled. That divergence has led the federal government to increase scrutiny of hospice providers — most notably San Diego Hospice, the largest in the state — by questioning the eligibility of those accepted into care. At the heart of the spiraling cost is a group of patients outliving their six-month prognosis. Under pressure to save money and find fraud, Medicare is now asking, are they really dying?

HOW LONG HAVE I GOT, DOC?

When the Sallises moved back to San Diego from Riverside County to be closer to their kids a couple years ago, they had to choose a new family doctor.

Betty, a tall, slim, no-nonsense kind of woman, describes their decision, Dr. Daniel Hoefer, as random.

Now, the Sallises look back and believe some act of divinity was at play, sending them a doctor who’s been nothing short of a lifesaver, or at least, life extender.

“How are you doing today LC?” Hoefer asks.

“Okay, doc and you,” LC says.

Dr. Hoefer, a family physician and Chief Medical Officer of Sharp Healthcare’s Outpatient Palliative Care Program, doesn’t usually make house visits, but on a day in January he’s made an exception, agreeing to meet with a reporter and speak openly about LC’s illness and prognosis.

He bends down to look at LC’s swollen ankles.

“I’m going to look at your sexy legs,” Hoefer says.

“Don’t whistle,” LC says. “They’re puffed up there pretty good.”

Puffy isn’t a good sign. Hoefer is concerned that LC’s heart is so weak it can’t keep up with the demands of his body, and fluid is accumulating.

“Gravity is keeping you alive, keeping that fluid out of your lungs,” Hoefer tells LC.

LC no longer lies flat on his back. Ever. It could kill him. Most of his day is spent sitting upright on a recliner nestled in the corner of the living room, watching television, passing the time with Betty, his wife of 66 years.

At night, he sleeps in an elevated hospital bed three feet from Betty’s queen bed.

“That’s been the worst part of it, after 60 years of having someone in bed with you every night and all of sudden you’re in this queen size bed all by yourself. I miss that closeness of sleeping together at night,” Betty says. To continue reading, click here.

Adam And Krystyna: Hospice Under Scrutiny

To listen to the audio version, click here. 

March 21, 2013 by Joanne Faryon SAN DIEGO

Last November, a nurse handed Adam Saling a letter. It was about his wife Krystyna. The two had been married just a month shy of 56 years. They shared a history marked by war and refuge, and a life together in southern California where they both fell in the love with the geography of the place. Theirs is the kind of marriage where Adam, 80, still looks at Krystyna, 83, as though he’s seeing her for the first time. 

Adam pulls the letter from one of the neat piles of papers that punctuate the rooms of his home, showing it was from San Diego Hospice. The letter told Adam that after receiving care for the past six years, Krystyna was being discharged because her disease — Alzheimer’s — had stopped progressing.

She was no longer dying. It might have been good news to someone less familiar with Krystyna, some offer of hope. But for Adam, it was a cruel joke.

“It would have been funny if it was not so dramatic, ” he says.

Krystyna’s Alzheimer’s is in the late stages. She no longer recognizes the people who were most important in her life, she can’t read or write. She spends afternoons in a recliner in a nursing home, gently rocking herself.

Just nine days prior to receiving that letter, Krystyna lost her ability to walk. “It was untrue the disease halted, because the disease is progressing even as we speak,” Adam says.

Adam had witnessed his wife’s slow decline from strong and vital woman to a frail whisper of her past self. The letter made no sense.

Per section 20.2.1 of the Medicare Benefit Policy Manual, discharge is permitted if the patient is no longer terminally ill,” the letter stated.

“I couldn’t understand it because once a person is terminal they are terminal until the end,” Adam says.

He appealed the decision, but lost. Krystyna was caught in the middle of a crisis at San Diego Hospice. One of the oldest and most respected hospices in the country was scrambling to do damage control as it was running out of money and the federal government was investigating whether their patients were eligible for hospice care. Were they really dying?

After six years of receiving weekly visits from a team of nurses and health aides, Krystyna was cut off from the government-paid service. She was not the only patient discharged – there were others in her San Diego nursing home – hundreds more across the county. In total, San Diego Hospice reduced its patient population from 1,000 to just 400 late last year.

With a Medicare audit still hanging over them, along with the prospect of having to pay back as much as $50 million, hospice executives decided last month to file bankruptcy and close the business. It’s discharging the remaining patients this month.

While the attention on San Diego Hospice has been focused on money and compliance, the KPBS and iNewsource Investigations Desk revealed to the public for the first time this week, that poor patient care also was an issue. It almost cost the hospice its Medicare contract last year. Inspection reports revealed a series of medication errors and neglect — a dying man lay in his own blood with a large open wound, pressure sores and bruises.

Whether it was a matter of care, compliance, finances, or some combination that led to the demise of San Diego Hospice is still unclear. But the experience has left Adam Saling questioning the rationale of the system, and the integrity of the venerable local institution that abandoned his wife when she needed it most.

What is clear to Adam is each day that passes brings him closer to saying goodbye to Krystyna.

Adam and Krystyna

Adam and Krystyna met at a junior college in Ingolstadt, Germany. Both had been born in Poland. They had landed in Germany as refugees with their families during the war. Krystyna and her mother deported, Adam and his parents escaped as the Russian army advanced.

Adam took notice of the pretty brunette as she wrote in her notebook. She was crying.

Krystyna was mourning her father. At 19, she had been with him when he died and buried him alone. Her mother was too sick to attend the funeral.

This was the girl Adam wanted to be with, but shy and three years her junior, he didn’t know whether an average looking boy stood a chance with someone like Krystyna.

School ended, and so did their brief romance. But they would meet again. This time as young immigrants in Chicago. Adam proposed and the two were married. That was in December 1956. The next several decades brought with them a move to San Diego, new careers: Adam as an engineering draftsman, Krystyna at first a draftsman, later a translator, and finally a writer and painter. And there was Magda, their daughter.

“Life was very nice in Southern California,” Adam says.

Until 2003. Krystyna was diagnosed with Alzheimer’s Disease.

“There was absolutely no indication that Krystyna was threatened by a disease especially a mental disease.”

“She was…”

Adam pauses. Memories of Krystyna before the disease crack his composure.

“Her mind was very active and she was a rather brilliant person.”

For Adam there could perhaps be no more cruel a disease to steal away his wife than Alzheimer’s. This was a man who had been so captivated by his wife’s intellect and her passion for learning. This was a disease that would steal all of that. To continue reading, click here….

San Diego’s Mayoral Election

The Truth About Nathan Fletcher: Mayoral Candidate Reveals Abusive Childhood

To listen to the audio version of this story click here.

By Joanne Faryon/inewsource

In May of 1979, Randy Fletcher was 28 and unemployed when he traveled nearly 1,900 miles to Smackover, Ark. to retrieve his 2 ½-year-old son Nathan and return him to Carson City, Nev. Armed with a court order and a revolver, Fletcher was prepared for a confrontation with his ex-wife, Sherrie.

“…She has kept weapons in her presence in the past,” he testified during a custody hearing.

“I felt that if she had one of the weapons, obviously, I would not be able to get Nathan, but that, you know, I would probably have to leave and try again,” he said.

Nathan Fletcher doesn’t remember that day, but what he does remember is “a living hell” his father’s home became after his mother lost custody. His biological father had “wild swings from very violent to very apologetic … It doesn’t make a lot of sense then, it doesn’t make any more sense today.”

Fletcher, a former California assemblyman and second time candidate for San Diego mayor, sat down Sunday afternoon with his mother, Sherrie Graham, in the KPBS studios for an exclusive interview withinewsource about his childhood. Although he said he has rarely revisited details of his young life, his past is becoming part of the campaign.

“I’ve done my best to try to protect my family and protect what little privacy you can when you run for office,” he said.

“Like so many families out there, my life experience doesn’t fit neatly in a 30-second sound bite.” to continue reading click here….

And to listen to the audio version of this story click here.

Who’s Supervising San Diego? A 30-minute Envision special

San Diego County Supervisors have been praised for their ability to balance the budget and amass more then a billion dollars in reserves. But they’ve also been criticized for neglecting their responsibility to the county’s poor and most vulnerable citizens. Despite the scope of their job and the size of their budget, the board isn’t often scrutinized. They have at times been called the Invisible Government. I researched, reported and produced this special.

Host and interviewer

 

The Follow-up interview

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