When Does End Of Life Begin: Hospice Under Scrutiny
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.
CAVANAUGH: Our top story on Midday Edition, we learned on Monday that San Diego hospice is filing for Chapter 11 bankruptcy. That announcement follows months of headlines that this largest and oldest hospice care facility in San Diego is the subject of a federal audit. Joanne Faryon, I-newssource producer, you've been familiar with this continuing story. FARYON: That's right, Maureen, we first started telling you about this story several months ago when it was learned that San Diego hospice was under this Medicare audit. It's ongoing. It began in February, 2011. What's happened since it began, Medicare is questioning the eligibility of several of its hospice patients. San Diego hospice started discharging several patients. They went from 1,000 to 500. So yesterday they filed a chapter 11 bankruptcy, basically said we now have about half the number of patients in care, which means they're getting half the amount of money from Medicare, because that's who pays for hospice, and they're reorganizing. CAVANAUGH: So the problems have led to this reorganization filing? FARYON: Exactly. And we also obtained an internal document that had gone up to employees, and the head of the hospice did want to make it clear that patient care was still the No. 1 priority. They still do have patients in care, and that basically to let their clients know that they were going to do the utmost to make sure that care continues. CAVANAUGH: Now, the troubles at San Diego hospice prompted some questions at the I-newssource investigations desk here at KPBS. In a series of reports, the investigation finds that as Americans continue to live longer, both the cost and the definition of hospice are expanding. I want to reintroduce what you've been hearing right now, Joanne Faryon. She is working on that series. It's called when does end of life begin, and welcome. FARYON: Thanks, Maureen. CAVANAUGH: Suzie K. Johnson is also here, be vice president of sharp hospice. Welcome. JOHNSON: Thank you. CAVANAUGH: And doctor Daniel Hoefer is joining us, welcome to the show. HOEFER: Thank you very much. CAVANAUGH: Let's start out with why you wanted to work on this series. FARYON: Well, what we really wanted to do at KPBS was look at our growing ageing population. We know the baby boomers are turning 65. When you turn 65, you can access Medicare, so we wanted to look at what's going to happen to all these people with regard to healthcare? Our focus became more narrow when we learned more about hospice and decided now, this is a great lens by which to tell this story. CAVANAUGH: Now -- and what have you found out so far as you've begun to tell this story? FARYON: Well, there's a lot going on with hospice care that this is something more and more people choosing. 44% of the people enrolled in Medicare who died in 2010 chose hospice at the end of life. So it's something that more people are turning to, but as a result, it's costing the federal government more money. Ten years ago, it cost about $2 billion, $3 billion a year. Now it's up to $13 billion. The other thing Medicare is looking at, we've got twice as many people choosing hospice, but it's costing us quadruple the amount. So what's going on? So they're asking the question, what's going on with hospice? And they have launched these audits, which we just heard San Diego hospice is sort of undergoing one of these, but it's happening across the country, not just here. CAVANAUGH: We have CEO of San Diego hospice on the line. Kathleen, welcome to the program. Are you with us? NEW SPEAKER: I am, can you hear me? CAVANAUGH: Yes, I certainly can. Thank you for joining us. I just have a couple of quick questions for you because Joanne Faryon gave us a good background of what may have led up to this Chapter 11 bankruptcy filing. What happens to patients currently in care at San Diego Hospice? NEW SPEAKER: Oh, our patients won't feel any difference. We'll still be providing the amazing care that we've been delivering to patients for the past 35 years. This really is about us looking at restructuring and addressing our financial issues. Our staff is remarkable and still out there caring for patients tremendously. CAVANAUGH: But you have had to cut staff, and you've moved your facilities of the will you still be accepting new patients? CAVANAUGH: Today, yes, we will still be accepting new patients. Of and the reason for the staff cuts, as our census has decreased, we needed to outline the staff to more appropriately fit our census needs. CAVANAUGH: How will this reorganization change San Diego hospice, this reorganization that is required by a Chapter 11 bankruptcy filing? NEW SPEAKER: For us right now, going into chapter 11, it really is to allow us to continue our operations while we're reorganizing our liabilities and assets. Overall patient care should not be impacted. It really is why people go into Chapter 11, to reorganize financially. CAVANAUGH: Last question to you, Kathleen, any idea when the federal audit is going to be completed? FARYON: That has been one of the great mysteries out there. We've been anticipating it for about two years now and have had very little information coming from Medicare, and we just have no idea. CAVANAUGH: Okay. Thank you for joining us. NEW SPEAKER: Can I clarify one more thing? CAVANAUGH: Go ahead. NEW SPEAKER: The great stories that are coming out in the paper, I just really wanted to clarify that although we have filed for bankruptcy and we're hoping we can work through our current financial difficulties, the process is uncertain. So I want the community to know that we actually encourage Scripps to enter the hospice business, to help us meet the community's needs for high-quality hospice care. I know there's a lot of publicity around there about Scripps going into hospice business. And we have a longstanding positive relationship. And I truly believe as we're working through our issues, Scripps opening hospice will be a great outcome for our community. CAVANAUGH: Duly noted, Kathleen. Thank you for joining us. Joanne, you were explain to us why you have decided to start on this series of reports. I think that maybe since we've done so much talking about it, just remind us, what's different about hospice care than just going to the hospital for treatment? FARYON: Right. So people are choosing hospice, I think, primarily they're saying we want to die at home. We don't want to have the end of life hospital experience. And it's really a kind of homecare, as an outsider looking in, and spending time with some people in hospice, this is it a service where you have nurses on call, and nurses will visit your home once a week, twice, three times. She'll find out, are you taking your medication, what's happening day to day, how are you living, how are you managing your care? The person in the hospice knows that there isn't a treatment or an operation or a therapy out there that's going to reverse the disease, that's going to stop or make them better. Buff they want to be made comfortable and get quality of life at the end. So they pick this kind of care instead. CAVANAUGH: And it's our vernacular to say that someone has gone into hospice care. Do people actually go anywhere? FARYON: Most of the care, one statistic I read was 95% of the care happens in the home. CAVANAUGH: Now, I want to bring Suzie Johnson in, you're vice president of sharp hospice. You've been in the hospice industry for a number of years. What's accounting for this trend? More people in hospice, and more of them living more than six months? JOHNSON: Well, when the hospice care benefits started in 1982, most patients who came into hospice care had a diagnosis of cancer. Over time, that's changed. People live longer now with medical diseases, heart failure, COPD, etc, and because they are living longer with advanced illness, it's appropriate that there comes a time where patients are really focusing on pailiation of symptoms versus trying to reverse or cure a disease. CAVANAUGH: But that six month limit -- JOHNSON: That comes from Medicare. Medicare says you're terminal if your disease progresses as predicted, you will die in six months or les. So that's where this whole notion of living the six months doesn't mean you're still terminal. And I will clarify, Medicare says if you're reevaluated, and you have less than six months to live, your hospice benefits can be extended. But there are a growing number of these people who are in hospice and receiving care past the six months. So Medicare is saying, wait a minute, are you still eligible? CAVANAUGH: Doctor Hoefer, you treat people in hospice care. If people are being cared for at home, why does that have to be designated hospice care? HOEFER: That's a great question. And ironically, in many cases, it is the same care I would provide as a family physician as I would as a hospice palliative provider. The management of symptoms is simply to take the care and to be sure those patients are managing their condition as efficiently and effectively as possible. That's the most aggressive way to effective symptom management. And I don't always see a defense between traditional medicine and hospice and palliative medicine. What I do see is a lot of people don't understand hospice and palliative medicine. The current system we have in America doesn't provide for us to stay and maintain a presence to continue that high level of aggressive symptom management unless you're on hospice. CAVANAUGH: Considering that explanation, I'm going to throw this out for the panel here. Considering the costs increase in hospice care, it's almost double the number of people who are in it, are it's increasing at quadruple the rate, why is it so expensive? JOHNSON: Well, it's not more expensive than traditional care. FARYON: And I think you can pick up on how much money you're paid when you take hospice clients. JOHNSON: Right. Hospice is paid a per diem rate. When you look at the total cost of care over a period of time, hospice care is less expensive for almost every single disease type. I think the point is at what point are patients are appropriate for this level of care? And that is the puzzle that is very difficult to actually answer. CAVANAUGH: And part of that puzzle is the fact that hospice care is shown to actually in some cases extend the life expectancy of some patients; isn't that right? HOEFER: That's absolutely true. CAVANAUGH: Why is that? HOEFER: The answer would be because when you put a patient on hospice early enough, as I pointed out, we don't just start morphine and oxygen, but we take that care and use it more effectively. We keep those patients from decompensating, meaning they have to call 911 and go to the emergency room. What's the most costly tool we use at the end of life? The hospital. 25% of charges for Medicare per year go to the last year of life, and of those charges, most of them are hospital-based charges. That's not part of the picture anymore when they're on hospice. So you always have to balance the cost saves versus the cost you lose, and the irony is by being more aggressive with that in-home traditional care layered on top with hospice and pailiative care, the patient lives longer. CAVANAUGH: I see. So you have more people who are being extended beyond that six months that was originally envisioned by Medicare. JOHNSON: That's right. And it's a multiplier effect, right? Nationally it's about 150, you times that by 30 days, and someone might be getting $1,000 to have them in hospice care. San Diego hospice, they're an $83 million business as one hospice, and most of that money is coming from Medicare. CAVANAUGH: I see. You've been spending time with one of doctor Hoefer's patients and his wife. FARYON: He's same is al C. Solace. Basically his heart is giving up. He's been in hospice care 13 months. So he is the poster child for this sort of patient that's really in the minority. Even though there's a growing number, there's still fewer of them who is living past his 6-month diagnosis. For all of these reasons that doctor Hoefer mentioned, he's managing his care at home. He hasn't been to the hospital in two years, and I want to play some tape. This is a great example of how hospice care is different. To set this up, I'll let you know that his wife, Betty, starts telling the story, she tells me she's at home and suddenly she hears him call out for her. NEW SPEAKER: And I said where are you, and he says laying in the kitchen floor, and I mean, he was in a pool of blood like that. He had split his eyebrow open. So I just said lay there till I can get this blood cleaned up, then I got a pillow and covered him with a blanket and called hospice. And I said should I call 911, and she said no, your nurse is on her way. She was here within five or ten minute, and she looked at him and she said you're going to be taking him to urgent care. He needs some stitches. CAVANAUGH: And so why call hospice before you call -- or instead of calling 911, Suzie? JOHNSON: Better care court coordination. There wasn't a reason for him to go to the emergency room. Had he gone, the likelihood he would have been assessed for his heart failure and other symptoms was very, very high. His wife and he have the skill set to manage at home with supportive care. And I think this is where hospice is so absolutely critical. Why do people live longer? Care coordination, care management, aware of symptoms, this is what we're going to do, this is how we'll help manage you. So we did L. C. And his wife a big favor by managing him at home where care is safer and the environment is more familiar and avoiding a hospitalization all together. FARYON: This is a couple, they have been married for 66 years, and Betty says the worst thing about all of this that's happening is they can't sleep in the same bed because L. C. Has to sleep in the hospital bed. So imagine L. C. Having to be hospitalized. So Betty wouldn't even be in the same building with him. How that would have -- you know, played out for both of them because they're a unit together. And that's what you see. He has this powerful caretaker at home with him, and it's making a big difference in his life. CAVANAUGH: Many people have basically said that hospice is a tremendous idea, so many people choose it. We've heard that more people are choosing it. Again, there's this rigid -- these rigid rules that are being used. Is there any movement to sort of change that and to widen out the definition. Hospice? HOEFER: The answer is absolutely. And it's not just widening the definition of hospice, but it's palliative care, and palliative care is prioritizing comfort without abandoning traditional care but prioritizing what patients ask for. It's not about one person or the other, it's about everybody. But people should have the choice about where they want to be at the end of life, what type of care they would want, and if they want the hospital, that's fine. But we're offering them an alternative that the vast majority of patients are looking for. How you would expand hospice is to redefine admission criteria and understand what hospice is because it's a different declined structure for every diagnosis. People with cancer die differently than people with dementia, and the needs of people along the end of life functional decline pattern is dramatically different. So six months is an arbitrary time that only fits an economic model, not a practical medical model. CAVANAUGH: Joanne, what's next? FARYON: What we're working on now is part 2. As a result of this increased scrutiny, hospitals are discharging patients. So patients are getting letters saying you are no longer terminal or you no longer qualify. So we're going to follow up on these patients and find out where do you go? Do you end up in the hospital, what happens to you?
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.
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, Hoefer 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 Investigative Newsource found the number of people in county hospices who lived longer than six months increased from one in 13 in 2004, to one in nine in 2010.
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 24-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,” Pucurar says.
For its part, Medicare has said little about the hospice audits. But news of investigations is slowly trickling out.
“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 Sallises 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 Suzi Johnson, Vice President of SharpHopsice, 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 Sallises 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.”
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.”