Adam and Krystyna: Hospice Under Scrutiny

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 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.

Alzheimer’s

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.

“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.

Remembering Krystyna

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

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inewsource data analyst Ryann Grochowski contributed to this report.