Adam And Krystyna: Hospice Under Scrutiny
inewsource video journalist Brad Racino shot, edited and co-produced all video segments.
CAVANAUGH: Today on Midday, we're going to talk about an issue triggered by the closure of the San Diego Hospice. It's a perfect storm. Baby boomers are aging. There's a decline in the number of children who can be caregivers, and the safety net is prone to drastic cuts. Joanne Faryon produced a story of one couple's troubles with the closing hospice. Mario Garret, thanks so much for joining us. GARRET: Thank you for inviting me. CAVANAUGH: And Mary Ball, who is president and CEO of the San Diego Alzheimer's association, also of Imperial County, right? BALL: Yes, thank you for having me. CAVANAUGH: Let's listen to Joanne's story because I think that kind of sets the scene and gives us an idea of why this is such a crucial issue. FARYON: Last November, Adam Saling received an unexpected letter. It was about his wife, Krystyna, she has late-stage Alzheimer's disease. The letter was from San Diego hospice. It was notification that after receiving hospice care for the past six years, Krystyna was being discharged because he was no longer dying. He had witnessed his wife's slow decline from strong and vital woman to a whisper of her past self. Just nine days prior, she had lost her ability to walk. SALING: The letter from the hospice that essentially she is no longer terminal. I couldn't understand that because once a person is terminal, it's terminal until the end. FARYON: After six years of receiving weekly visits from a team of nurses and health aids, she was cut off from the government-paid service as San Diego hospice scrambled to discharge patients who may not have been eligible for care. She was not the only one discharged. There were others in her 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 as it tried to get ahead of a Medicare audit and federal investigation questioning whether the people they were caring for were actually dying. Adam and Krystyna first met at a junior college in Germany. The music is a Polish solidarity song. It defined the time for Krystyna and Adam. They emigrated to Chicago. Adam proposed, and the two were married in 1956. The next several decades brought with it a move to San Diego, new careers, and a daughter. SALING: Life was very nice in Southern California. FARYON: Until 2003, Krystyna was diagnosed with Alzheimer's disease. SALING: There was absolutely no indication that Krystyna was threatened by a disease. Her mind was very active. FARYON: Whether Krystyna was ever eligible for hospice when her doctor first referred here in 2006 is at the heart of why San Diego hospice is being investigated by the federal government. SALING: Even then, she was not in a bad condition. FARYON: Hospice is under scrutiny nationwide. The government wants to know what's behind its soaring cost. $13billion in 2010, four times what it was a decade ago. Add up the monthly benefits San Diego hospice was paid for Christina's care over the six years, it totals more than $300,000 for one person. Doctor doors howl founded San Diego hospice in the '70s. She says she knew taking on too many Alzheimer's patients for too long was causing a problem. SALING: We looked at them and said do you want us to, you know, say on 12:00 in six month, the patient is no longer eligible? FARYON: Krystyna is losing the ability to swallow, the final stage of Alzheimer's. Weeks after being discharged from San Diego hospice, she was accepted by another provider. The experience has left Adam questioning the rationale of the system and the integrity of the institution which provided his wife treatment when she didn't need it and abandoned her when she needed it most. SALING: She has led a very interesting and active life, and would like our friends to remember her. CAVANAUGH: And we have in studio to talk about the issues that this story brings up, Mario Garret, a professor of gerontology, and Mary Ball, president of the San Diego Alzheimer's association. The story we just heard was about a woman who was cut off from the San Diego hospice because she took longer than the officially allowed time to die! How is this a symptom of what is facing many older people today? GARRET: Well, in most case, you don't have to die within the six months, you know? You can get an extension on that. We must make sure that people understand that. Medicare is there to help people in hospice to die with dignity. So they shouldn't put people away from using that service. Actually it's underutilized. We need to use more hospice. But this shows how piecemeal our services are for older adults. We have people dealing with hospice, with medication, dealing with transportation, and they're all separate, and they're all silos. What there needs to be is better coordination, and really to look at the case that we had here about the woman that had Alzheimer's disease. It takes about 15 years, you know, for it to kill you. So that's a long gestation period. And we need to make sure that the services that that person needs are there for her or him. The issue now is we don't have that coordination. What we have is really silos, people providing one type of services to an individual and really no coordination. CAVANAUGH: Okay. So Mary, this is just the story of one woman, Krystyna, but how difficult is it to find care for people in their declining years who have Alzheimer's specifically? BALL: Well, it's very challenging. And today in San Diego County, there's more than 60,000 people that are living with Alzheimer's disease. And the typical length of time before they pass away is about ten years. And the challenge for many families is the need for care is long before end of life care. And the services that are out there cost money. And many families economically can't afford to have someone come into the home to supervise their loved one or adult daycare services. So it's very challenging for families to find care throughout the time their loved one has Alzheimer's disease. CAVANAUGH: So Mario, what are you people to do when they take six months for the whole process? GARRET: That's right. And there are fragmented services after that. If this is difficult for the general population, look at migrants and how difficult it is for migrants. It's also extremely difficult in San Diego. We have a very large Latino population, and we have not addressed that. We just actually today have a paper populationed in the general of population aging looking at that increase among the Latino population. And by the year 2050, what we expect is that the Latino population suffering dementia will increase by 11 times! 11 times! And we are not -- CAVANAUGH: What is the cause of that increase? GARRET: Well, the cause is a number of factors. A lot of demographic issues, but primarily it is demographics. The second one is because a lot of Latinos suffer from diabetes, hypertension, cardiovascular diseases. So preconditions. Dementia is really a problem of the brain, and the brain is a very fine organ. Anything that is bad for your health is bad for dementia. And what we are seeing is that there is very little proactive -- addressing the issues that are coming down the pipe. CAVANAUGH: Well, you're adding to the issues now by pointing out that perhaps there's going to be a big increase in the Latino population. But the same applies to all of us, I guess. GARRET: Correct. CAVANAUGH: You're talking about the fact that there are silos, what do you mean by that? GARRET: Well, silos in terms of we have services that only cater to one specific need. What you find when you get old is that the needs are not specific, they are very general, and also they happen very fast. So if you break your leg, it's not just about an orthopedic support that you need. You need transportation, you have issues with eating, problems with communicating with people. So it's really an all encompassing problem, and especially with older adults. CAVANAUGH: So you can't just go to one place. Where's the hospice is one place, I guess. GARRET: Correct. CAVANAUGH: Mary, have you had a lot of inquiries since the hospice had to close from people looking for assistance? BALL: We have had some inquiries. The good thing in San Diego, there's a number of hospices out there that are bridging the gap and filling that need in the community. The estimates are in hospice care, more than 1/3 of the people in hospice care today, whatever hospice it might be, are suffering from Alzheimer's disease or related dementia. And it is very difficult with those folks to really determine what the lifespan may be. CAVANAUGH: And the medications -- BALL: And the medications. But the issues about care start long before end of life care. The issues about daycare and supervision start ten years before that. And I think those are the issues as a community. And at the federal level, we've got to address -- of course we've got to address changing Medicare eligibility around Alzheimer's disease. But it starts long before that. CAVANAUGH: So you're sort of saying that this void exists so it's not surprising that San Diego hospice kind of stepped into it because there was no -- is it true to say that there really isn't another easy alternative? BALL: There aren't. For many of these families, there aren't other the alternatives. And when they are seeking assistance from their medical doctor, they do refer them to hospice care because they're not sure when that person may pass away. And it's a benefit that's covered by Medicare. Where other options aren't covered by insurance and people don't have the resources. GARRET: Yes, hospice is not just about a dying person, it's also about a family. Which is why it's such a great service. And we really need to address what the needs are. And we said at the start of this discussion, we should not frighten people from using hospice. Hospice is excellent, they need to use it, and if they need more time after six months, there are ways of doing it. But it's not clear cut. And we need to bring end of life issues back on the table. We need to start discussing them, leave the politics out of it, the religion out of it. We need to discuss it in a very rational way. And what the guy, the reporter said about having -- not understanding the rationale for this, really we do not understand the rationality for it, and we need to talk about the rationality of our healthcare system in general, and specifically end of life issues. CAVANAUGH: So are you suggesting that one solution might be to extend the amount of time that people can stay in a hospice? Or are you saying that there's other things that need to happen? GARRET: Everything should be on the table! End of life, assisted suicide, prolongation of life, everything should be on the table. There are some people who are very comfortable with physician-assisted suicide, and other people are not. We should not have a one size fits all. We need to address the needs of the individual. And we don't do a very good job with this. We say this is what we provide, this is what the federal government funds us for, and that's all we're going to do. And that is in fact very piecemeal and doesn't get us anywhere. This problem is going to keep coming up. CAVANAUGH: And it's not just the government that I guess should be thinking about this. Most of us think this is a problem we'll face when we get there! But do you think it's important for people to start thinking about this way ahead of time? GARRET: Of course! But the federal government of course pays the money. And they are the ones that control most of the discussion here. And it needs to be a discussion on the federal table, it needs to be a discussion on the state and that level as well. CAVANAUGH: And the private way, how many people are taking advantage of that finding that it helps? BALL: Very few people take out long-term care insurance. It's in the single digits. And for the people that we work with who have been diagnosed with Alzheimer's disease which is a terminal disease, they don't have the long-term care insurance. So it really limits options out there for them. GARRET: Yes, and they try to promote that, but it has never been very popular, unfortunately. CAVANAUGH: So it is more of Medicare coming up with better solutions, right at the time when Medicare is looking at possible cuts. GARRET: That's right. CAVANAUGH: Okay. This leaves us with a conundrum, but we'll have to leave it there for now. Thank you so much for joining us. BALL: Thank you. GARRET: My pleasure, thank you, Alison.
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.”
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.
Along with his own observations, Adam is writing Krystyna’s biography and compiling the many essays and poems she wrote into a book.
“She cannot comment on how she feels, complain of a horrible headache, or express any needs, or understand what choice she has,” Adam writes about Krystyna.
“She can not change the conditions that surround her, complain of a noisy room-mate, or walk to the toilet. If someone makes a change that is bothersome, she cannot express opposition.”
He is still mystified by the situation in which he finds himself.
“Sometimes, sitting beside her, Adam looked at Krystyna, and her face seemed the same as years ago. Her expression was peaceful, her eyes were alert, as if nothing had happened. Often he had an irresistible urge to fathom her mind. Was she still capable of thinking?”
Alzheimer’s is the sixth leading cause of death in the United States. Care for Alzheimer’s patients cost Medicare more than $100 billion last year, almost fifth of its total budget.
And the disease is quickly making its way to the top of the list of diagnoses of patients choosing hospice care.
An analysis of state data by inewsource shows dementia patients made up the second largest group of patients in San Diego Hospice in 2011 after cancer. Dementia patients also stay in care the longest.
Hospice is an approach to end-of -life care that aims to keep people out of the hospital and without pain so they can die at home. The federal government pays for most hospice services for Medicare-eligible patients. In 2010, the program cost the government $13 billion, four times what it cost in 2000.
To qualify for hospice, patients must meet certain Medicare guidelines -- primarily that they have a terminal illness which would cause death in six months or less. Hospice can be extended past six months, but only if a doctor certifies the illness is continuing to progress and the prognosis is imminent death.
Krystyna’s doctor referred her to hospice in 2006. She was still living at home with Adam.
“I was shocked when Krystyna’s doctor recommended she get hospice care because even then she was not in a bad condition. physically she was still healthy,” Adam says.
“She still walked and did all the housework. She still cooked.”
Hospice provided a home health aide twice a week who helped with bathing.
After suffering a small stroke, Krystyna was moved to a private nursing facility.
At that time, her visits from hospice workers increased, to a health aid twice a week, a registered nurse once a week, and a social worker and spiritual counselor every two weeks.
Hospice also paid for her prescription drugs.
Adam has amassed a file of Medicare statements over the past several years that detail how much San Diego Hospice billed the government for the services.
In the beginning, the amount was $4,500 a month. The standard rate has increased slightly over the years, and depending on the state in which you live and whether additional services are provided, costs can increase dramatically.
“I was astounded how expensive this was, how high the pay rates,” Adam said. “These were without a doubt qualified professionals, registered nurse and social worker, but I was rather astounded by the pay rates that they have.”
San Diego Hospice would have received about $300,000 for Krystyna’s care over the six-year period, a conservative estimate.
At the same time, Adam, with the help from his long-term insurance, was paying between $3,700 and $5,200 a month for Krystyna’s nursing home care. This was on top of what Medicare paid.
“Because she doesn’t get complete care from the facility where she stays, she has this hospice service. And in a way, it is a duplication of care by different agencies which seems strange. The duplication isn’t only in care, but in cost,” he says.
When Medicare introduced the hospice benefit in the early ‘80s, most patients had cancer. Today, debility and decline, a catchall for old age and frailty, is topping the list of diagnoses of hospice patients across the country. Non-Alzheimer’s Dementia is number two; Alzheimer’s is number eight.
Not surprisingly, Alzheimer’s patients receive hospice care for the greatest amount of time, about 3.5 months, according to government statistics.
Predicting death in dementia patients is difficult, given the slow progression of the disease.
Whether Krystyna was really eligible for care when she was first referred back in November, 2006, and whether San Diego Hospice ever properly recertified her to remain in care, is at the heart of why the the federal government is investigating hospice.
Alzheimer’s patients: “We don’t want to be cruel.”
San Diego Hospice had been warned in the past about accepting ineligible patients.
In 1997, an audit by the Office of the Inspector General for Health and Human Services found 37 patients in care shouldn’t have been in hospice care. They had been in care an average of 17 months. One of them for four years. Of the 37 ineligible patients, seven were Alzheimer"s and Dementia patients.
Dr. Doris Howell remembers the warnings.
Howell, together with a handful of others, started providing hospice care back in the 1970s. As an oncologist who saw cancer and death every day, Howell spent most of her life trying to change it by making hospice an acceptable option, even mainstream.
With the help of nearly $40 million from Joan Kroc, heiress to the fast-food chain McDonald’s, and many other philanthropists, San Diego Hospice became the largest in the state and one of the most respected in the country.
In the beginning, mostly cancer patients chose hospice in the their final weeks or months of life. But the lists of diagnoses grew to include heart disease, kidney disease, and debility and decline or old age.
“Then the Alzheimer’s disease came along,” Howell says.
And as the list of diagnoses grew, so did the number of weeks and months patients received care.
“I’m sure we admitted some Alzheimer's patients because they had other diseases that deserved treatment... and (we) make their life more comfortable, but its hard to throw them out,” she says.
Medicare warned them in past years about the problem.
“We sort of looked at them and said do you want us to, you know, at 12 o’clock in six months to say to the patient ‘You’re no longer eligible.’
“Of course they said, ‘Well no, we don’t mean that, we don’t want to be cruel but you do have to come a little closer to observing our recommendations.’”
San Diego Hospice won’t say how many patients received care who were not eligible, and neither will Medicare. The audit that prompted the scrutiny which reportedly led to bankruptcy has yet to be made public.
But according to testimony filed in bankruptcy proceedings as many as half its patients last year did not meet Medicare requirements.
They weren’t all Alzheimer’s patients.
Former employees who spoke to the KPBS and iNewsource Investigations Desk say the hospice accepted almost all patients who came to them for help over the years, at times stretching Medicare’s eligibility requirements. They agreed to talk but not to be named for fear of prosecution for Medicare fraud.
“If you’re in doubt whether to say yes or no, say yes. You are less likely to hurt somebody,” one former physician says about the admittance policy.
Another physician confirmed the philosophy was “open access.”
“The intentions were really good,” he says. “(We) saw all the suffering and pain, people who couldn’t get into community resources. (It) could have been overreach,” he adds.
Howell says hospice was such a new idea that if someone wanted that type of care, doctors were quick to refer them.
While good intentions may have led San Diego Hospice down this road, the federal government and the courts have cut them off at the pass.
In addition to the audit and intense scrutiny by creditors in bankruptcy court, a nurse fired by San Diego Hospice filed a whistleblower lawsuit alleging the hospice routinely admitted patients who did not meet Medicare eligibility.
The suit, filed last December accuses San Diego Hospice of falsifying patient records by urging nurses to be “creative” in admitting patients who had declined hospice care or were not qualified for the care under Medicare guidelines.
Krystyna kept a diary.
When she was 15, she got a letter from the German government, ordering her to report to the District Labor Authority in Hildburghausen. She was to work in Neuruppin, more than 400 kilometers from the refugee camp where she lived with her mother.
“‘Report back at one o’clock’ we are told and dismissed from the office,” Krystyna wrote in her diary.
She and her mother walk across a park when a bombing siren rings, a police officer shows them the nearest shelter.
“Bombs explode above, and the cellar rocks like a boat....Dust from coal bins filled our lungs, while the rocking walls fail to support our grasping hands. The lights go out.... A few minutes later the all-clear sound penetrates the darkness.”
Krystyna and her mother return to the government office, expecting Krystyna to be processed and sent to a labor camp.
“We walk toward the Labor Authority building, but where is it? Pieces of its roof rest on the lawn like beached boats, showing timbers darkened by the blast.”
It was February 14th, Valentine’s Day.
“Such was my birthday in 1945. Will I live to see another one?”
The diary is a wonderful gift, but heartbreaking for Adam. A familiar voice without any sound.
Krystyna has not been able to speak for the past five years.
It is clear from the way Adam talks of his wife’s life that it is her gift for communication (she spoke three languages) that he misses so intensely.
He spends four afternoons each week with Krystyna in the nursing home.
“I think she probably knows I am somebody close because I am there quite often but I doubt she actually knows that I’m her husband.”
Each time he brings freshly cut pieces of fruit and bottled water. After lunch, Krystyna sits in the recreation room, where tan-colored recliners are lined up opposite a large screen TV. Sometimes a movie from the 1950s plays.
Adam caresses Krystyna’s hair and speaks softly to her in Polish. He sings the songs from their college days, hoping they will remind her of him.
She is losing the ability to swallow, the final stage of Alzheimer’s.
Weeks after being discharged from San Diego Hospice, Kyrstyna was accepted into care by another hospice provider.
Adam is perplexed by a medical system that seems to provide such little oversight and makes rules that defy logic.
“She may die within weeks or she may live more than six months. There is no way to tell."
Adam wants people to know who is wife was: a child living in Poland during the Nazi occupation, a refugee in a German camp, survivor of war and activist in the Polish American community. She was a student of history; someone who liked to take long walks around Miramar Lake and was comfortable traveling to Turkey on a lone mission to learn more about her ancestry. She was a mother and grandmother committed to raising strong women.
And there is beauty in a life lived to the fullest and peace at the end.
“But suddenly, pounding in my veins.
My heart remembers scores of days
Of wildest happiness,
Forgetting times of doubt and pain.
Unaware to pray or plead, I stand upright,
Aware, even though numb and blind,
Immune to suffering, indifferent to arrhythmia,
Or loss of...loss of...loss of something...
Come, quiet night." Krystyna Saling