When Does End of Life Begin? Hospice Under Scrutiny

The story of how LC Salis 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.

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 Salises 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 Salises 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.

L.C. Salis shares a laugh with his doctor, Daniel Hoefer, at his home on Jan. 10, 2013.

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.

Hoefer tells LC to take a deep breath and listens to his lungs with his stethoscope. The wheeze is audible to everyone in the room. But what Hoefer can hear that no one else can, is the crackling in LC lungs, another bad sign.

“Like I asked you once before, how long do you think I got and I know you don’t know,” LC says to Dr. Hoefer.

“I will tell you the same thing I said, ‘if I had a hundred people in your situation, some would be here many months and some would be here for just a few days.’ So we just got to be prepared,” Hoefer responds.

“Only one person has that answer,” Betty says, another nod to whomever might be controlling the Salises’ fate.

Hospice may extend life

LC has been in hospice care for about 13 months. He’s lived longer than expected. Like an increasing number of patients.

Hospice services can include, nursing care; counseling, a home health aide, homemaker services, physical and speech therapy, home medical equipment and medication.

Dr. Hoefer is trying to palliate LC’s symptoms – that means he can’t reverse his terminal condition or make him better, but he can make him more comfortable as his heart grows weaker.

For example, LC has an electrical oxygen pump. It’s one of the first things you notice when walking into the Salis’ impeccably clean home. It makes a constant whirring sound, the white noise of illness.

LC goes almost nowhere in his house without the clear plastic tubes inserted into his nostrils. His oxygen levels are low enough, along with the fluid on his lungs, to make him uncomfortable. But his levels aren’t low enough for Medicare to pay for the equipment if he weren’t in hospice, Hofer says. That’s because for terminal patients, the oxygen is considered comforting, rather than life-saving.

A nurse visits LC at home at least once a week, but more often as needed. She tracks his fluid retention, will increase his diuretics (medication that increases urination) if needed, and will address any other concerns.

When LC fell on the floor not long ago and split his head, Betty didn’t call 911. She called hospice. A nurse was at their house within 10 minutes, assessed the situation and helped Betty get LC to urgent care for stitches.

“My patients don’t ever see the inside of the hospital because we’re bringing care to them,” Hoefer says.

Not going to the hospital saves money for the patient and for the healthcare system, decreases the risk of exposure to serious hospital based infections, and avoids the confusion and isolation of being surrounded by unfamiliar staff.

“The probability that LC would have been admitted for his heart condition had he gone to the ER would have been almost 100% even though he had gone in for his laceration only,” Hoefer says.

While, the majority of hospice patients die within the first month of care, there is evidence that — ironically — hospice can extend life.

A 2007 study published in Journal of Pain and Symptom Management concluded people in hospice lived on average, 29 days longer than patients who did not choose hospice at the end of life. People with congestive heart failure, LC’s condition, lived 81 days longer, according to the study.

An analysis by the San Diego nonprofit journalism organization, inewsource, found the number of people in hospice who lived longer than six months increased from one in 13 in 2004, to one in nine in 2010.

In 2011, 11.5 percent of San Diego hospice patients lived longer than six months.

The Medicare Payment Advisory Commission, (MedPAC), an independent Congressional agency, has published several reports outlining its concerns about hospice care.

The commission’s report to Congress in 2012, reiterated its past findings, “that the structure of Medicare’s hospice payment system makes very long stays in hospice more profitable for providers than shorter stays, which may have led to inappropriate use of the benefit among some hospices.”

Hospice providers are paid about $150 a day to care for each of their patients. They receive that per diem, regardless of whether they provide services daily or weekly. The cost of hospice tends to be higher at the beginning of service and at the end, making short-term patients the costliest, whereas long-term patients provide more room for profit.

Since 2009, the commission has made recommendations “to reform the hospice payment system, and ensure greater accountability in use of the hospice benefit.”

Hoefer describes Medicare’s crackdown on hospice providers as “misguided.” He agrees hospice providers shouldn’t accept “just anyone” because they want “their medications paid for or stuff like that,” he says. But the increased scrutiny is creating an economic paradox.

Medicare may in the shortrun find over-payments and inappropriate use, but in the long run it may discourage hospices from taking on qualified patients. Those patients will then turn to the hospital, which is many times more costly per day, for their end-of-life care.

Hoefer says Medicare is picking on the relatively small group of people who live longer than six months.

“They can pick on the tail all they want, that’s their privilege and responsibility. I can morally, medically, legally defend every one of the cases we’ve taken,” Hoefer says.

Hoefer’s assessment was recently verified – a Medicaid audit of Sharp Hospice did not find a single inappropriate admission.

The federal government is also concerned about the proliferation of for-profit hospices in recent years. For example, in San Diego County, the number of for-profit hospices jumped from six in 2007 to 12 in 2011.

Trouble at San Diego Hospice

Medicare introduced the hospice benefit back in 1983 as an experimental project. It was designed to help mostly cancer patients cope with pain in their final months of life, and allow them to die at home. San Diego Hospice, a nonprofit, was among the first to provide the care as an official Medicare benefit.

Respected as a pioneer in hospice, it came as a shock to many in the industry when news hit that San Diego Hospice was under federal investigation.

“None of it is about patient care, its all about eligibility, “ says Kathleen Pacurar, President and Chief Executive Officer of San Diego Hospice.

The Medicare audit began in February, 2011, shortly after Pacurar took over as president.

She recalls getting a letter informing her of the audit, and a short time later, eight people descended upon the organization for five days, taking with them a sampling of patient documents.

As recently as December 2012, San Diego Hospice was still being asked by auditors to submit documentation on every patient admitted.

Pacurar says Medicare could demand repayment of “millions” of dollars once the audit is complete, if it finds patients accepted into the program were not eligible.

Already, San Diego Hospice shut down its 25-bed hospital, laid off nearly 300 people, and consolidated its offices from Mission Valley into one location in Hillcrest. The move came after a lawsuit was filed by the owners of the Mission Valley office building, claiming San Diego Hospice had missed its December rent payment.

The beleaguered organization filed for Chapter 11 bankruptcy protection on Monday, saying it would allow them “to continue our operations, while reorganizing our assets and exploring our structural options to adapt to the current circumstances.” In a statement on its website, the hospice provider said it had cut its patient census by 50 percent over the past three months, “creating additional severe financial challenges.”

In its statement and in a fact sheet to employees, obtained by the Investigations Desk, San Diego Hospice emphasized its continued priority on patient care.

Medicare’s inquiry focuses on whether San Diego hospice allowed patients to stay in the program even when their diagnosis changed, in other words, they weren’t necessarily dying in six months or less.

“Making sure that what we’re providing in hospice is beneficial to the patient and that the way Medicare refers to it, they haven’t become what we call custodial patients or patients that have plateaued out,” Pacurar says.

San Diego Hospice began discharging patients late last year and is now more strict about who it will admit into the program.

“We narrowed the window of patients we take on because we’re so specifically looking at it through a strong lens of compliance,” Pacurar says.

For its part, Medicare has said little about the hospice audits. But news of investigations is slowly trickling out.

The National Hospice and Palliative Care Organization (NHPCO) points to a hospice in Delaware also under federal review and forced to lay off staff.

“They’ve (Medicare) recently began to turn up focus of audits for longer stay patients,” says Jon Radulovic, an NHPCO spokesperson.

Radulovic says the industry wants to do the right thing, and isn’t opposed to regular surveying. But the audits have had unintended consequences, including staff layoffs and patient discharges.

“Our biggest concern, are patients getting care they need?”

When does end of life begin?

LC spent most of his life working for a large commercial air conditioning and heating company in San Diego, but was forced to take early retirement at 52 because of his bad heart.

The Salises learned to stretch their retirement income, selling their Mount Helix home and opting to live in a mobile home in Hemet. Before they returned to San Diego, they travelled the country in their RV, became campground hosts, and never thinking they might one day use the service, volunteered at their local hospice. Now, on the receiving end, they are grateful.

“When the nurses and the different people (come) out to see us we just feel blessed…I can get on that phone day or night and call if there’s any problem,” Betty says.

Betty has heard about the crackdown on hospice providers, and she worries just a little that every small improvement in LC’s condition might mean they are at risk of losing the service.

It’s a conundrum: surpass a six-month prognosis and risk losing the care that is likely keeping you out of the hospital and extending your life. Experts are asking whether it makes sense to limit hospice care for a growing number of elderly, chronically ill patients who would benefit from it in the last year, even two years of life.

It begs the question, when does end of life begin?

For Suzy Johnson, Vice President of Sharp Hospice, its a question without a simple answer.

“Our society looks at death as an event, it’s not,” Johnson says. It’s a continuum.

People who chose the benefit in the early days had cancer. And cancer has a predictable course, which makes it easier for doctors to make a prognosis, Johnson says.

The most common conditions of people in hospice today, are those that make predicting death difficult. Diseases such as Alzheimer’s, Parkinson’s, and heart failure.

And then, there is old age.

Debility and decline is the number one diagnosis of those in SharpHospice, and the number one diagnosis in 2009 across the country.

It’s a complex diagnosis because it’s multiple ailments that together make someone frail and close to death. But just how close?

“It’s a slope that takes time,” Johnson says. “The crystal ball doesn’t always exist.”

Johnson, together with Hoefer, has created a pre-hospice service for their patients, called Transitions. Sharp provides a nurse and social worker to patients to teach them how to manage their symptoms. For example, heart patients are taught how to adjust their medication if they’re feeling short of breath.

“What we’re looking at, is how we design a care continuum so we hand off patients (to hospice) at the right time in their disease.”

But there’s a catch. Medicare doesn’t have a benefit called “pre-hospice care.” Sharp is able to offer Transitions by treating patients for a set amount of money rather than billing procedure-by-procedure. This way they can stretch Medicare dollars. Transitions also is supplemented by patients who have private insurance.

Johnson said there’s a whole in Medicare’s payment plan for late stage illness. “That’s the broken part of of our system,” she said.

Johnson, Pacurar, and national hospice advocates would all like to see Medicare allow the chronically ill to access hospice or palliative care, before the final six months of life.

“How do you take care of patients with advanced illness who may be close to end of life but maybe not terminally, who may not fit into that eligibility perfectly?” Pacurar asks.

Other hospices across the country are experimenting with pre-hospice programs as well, according to the NHPCO.

“We know hospice works. How do we capitalize on that success and make it (more widely) available,” Radulovic asks.

Getting every last breath out of life

The Salises look at an old photo album, spanning 66 years of marriage and the birth of their children and grandchildren.

“That was back when I had curly, curly hair ,” Betty says, looking at the couple’s wedding photo.

“I remember you had curly hair.”

L.C. and Betty Salis were married in a small chapel in Hillcrest in September 1946.

After just a three-month courtship, the two married at the Wedding Bell chapel in Hillcrest.

“I knew the first time I danced with her she was going to be my wife,” LC says.

They raised two kids, a boy and a girl. They were the family LC, who lost his mother at 12, had always dreamed of.

“LC needed to be loved and to be special and that’s what I tried to give him,” Betty says. “With seven kids, he didn’t get that individual special love that I’ve been able to give him over the years. Pat myself on the back, I think it worked.”

Talk to a hospice doctor about end of life, and they immediately bring up “goals of care.” In other words, they ask their patients for their bucket list; what milestone do they want to reach before they die?

For LC, it was his 66th wedding anniversary last September, followed by his son’s 65th birthday in October, and his daughter’s 60th birthday last month.

And then there’s the couple’s great, great grandson in Montana, born last August. LC pines for the chance to meet him in person, although he will never be well enough to fly.

“I can’t complain about nothing, if I did I’d be a fool,” LC says.

His doctor says he’s getting every last breath his heart will give him, but when do you ever feel you’ve lived long enough?

“I think he’s waiting to turn 90 years old the second of April,” Betty says.

“I don’t think I’ll be here,” LC says.

“Well, we don’t know, you’ve surprised us so far.”

Editors Note: LC Sallis passed away peacefully, at home with his wife Betty at his side, Feb. 17th. “It was a beautiful ending to a beautiful life,” Betty said about her husband’s final moments.

Betty and L.C. Salis, married 66 years, eat lunch together in their San Diego home.