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 and Krystyna Saling on their wedding day in 1956.
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 Saling in junior college in Germany.
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.
Krystyna and Adam Saling with their daughter Magda.
“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.
Top diagnoses for people who choose hospice care.
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.
Krystyna Saling in Venice.
“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 Saling while attending school in Germany.
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
——————
inewsource data analyst Ryann Grochowski contributed to this report.
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Gender Identity
Gender Identity
Gender Identity
Women
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Women
82%
Women
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Men
20%
Men
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Men
25%
Sexual Orientation
Sexual Orientation
Sexual Orientation
Straight
87%
Straight
82%
Straight
100%
LGBTQ-identifying
7%
LGBTQ-identifying
7%
Not specified
7%
Not specified
7%
Speak a language beyond English at home
33%
Speak a language beyond English at home
18%
Speak a language beyond English at home
75%
Race/Ethnicity
Race/Ethnicity
Race/Ethnicity
White
67%
White
73%
White
50%
Hispanic or Latinx
20%
Two or more races
18%
Hispanic or Latinx
50%
Two or more races
13%
Hispanic or Latinx
9%
Age
Age
Age
20-29
40%
20-29
45%
20-29
25%
30-39
47%
30-39
45%
30-39
50%
60 or older
13%
60 or older
9%
60 or older
25%
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Lorie Hearn is the chief executive officer, editor and founder of inewsource. She founded inewsource in the summer of 2009, following a successful reporting and editing career in newspapers. She retired from The San Diego Union-Tribune, where she had been a reporter, Metro Editor and finally the senior editor for Metro and Watchdog Journalism. In addition to department oversight, Hearn personally managed a four-person watchdog team, composed of two data specialists and two investigative reporters. Hearn was a Nieman Foundation fellow at Harvard University in 1994-95. She focused on juvenile justice and drug control policy, a natural course to follow her years as a courts and legal affairs reporter at the San Diego Union and then the Union-Tribune.
Hearn became Metro Editor in 1999 and oversaw regional and city news coverage, which included the city of San Diego’s financial debacle and near bankruptcy. Reporters and editors on Metro during her tenure were part of the Pulitzer Prize-winning stories that exposed Congressman Randy “Duke” Cunningham and led to his imprisonment.
Hearn began her journalism career as a reporter for the Bucks County Courier Times, a small daily outside of Philadelphia, shortly after graduating from the University of Delaware. During the decades following, she moved through countless beats at five newspapers on both coasts.
High-profile coverage included the historic state Supreme Court election in 1986, when three sitting justices were ousted from the bench, and the 1992 execution of Robert Alton Harris. That gas chamber execution was the first time the death penalty was carried out in California in 25 years.
In her nine years as Metro Editor at the Union-Tribune, Hearn made watchdog reporting a priority. Her reporters produced award-winning investigations covering large and small local governments. The depth and breadth of their public service work was most evident in coverage of the wildfires of 2003 and then 2007, when more than half a million people were evacuated from their homes.
Laura Wingard is the managing editor at inewsource. She has been an editor in San Diego since 2002, working at The San Diego Union-Tribune, KPBS and now inewsource. At the Union-Tribune, she served in a variety of roles including as enterprise editor, government editor, public safety and legal affairs editor, and metro editor. She directed the newspaper’s award-winning coverage of the October 2007 wildfires and the 2010 disappearance of Poway teenager Chelsea King. She also oversaw reporting on San Diego’s pension crisis.
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Wingard also worked at the Las Vegas Review-Journal as the city editor and as an award-winning reporter covering the environment and politics. She also was the assistant managing editor for metro at The Press-Enterprise in Riverside. She earned her bachelor’s degree at California State University, Fullerton, with a double major in communications/journalism and political science.
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His cross-platform reporting for inewsource has earned more than 50 awards since 2012, including back-to-back national medals from Investigative Reporters and Editors, two national Edward R. Murrow awards, a Meyer “Mike” Berger award from New York City’s Columbia Journalism School, the Sol Price Award for Responsible Journalism, San Diego SPJ’s First Amendment Award, and a national Emmy nomination.
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Racino has worked as a reporter and database analyst for News21; as a photographer, videographer and reporter for the Columbia Missourian; as a project coordinator for the National Freedom of Information Coalition and as a videographer and editor for Verizon Fios1 TV in New York. He received his master’s degree in journalism from the University of Missouri in 2012.
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Stripe, which allows us to accept donations through our website.
Salesforce to manage newsletter subscriber, donor, and other identifiable user data.
Mailchimp, to manage newsletter distributions. We collect your email address if you choose to subscribe to one of our email newsletters or email news alerts. Other optional information that you enter when subscribing – such as your first and last names or city are simply so that we can deliver more personalized email newsletters. We DO NOT sell, rent or market your information to any other parties. We retain your information only as long as necessary to provide your service. When we send emails, it collects some data about which users open the emails and which links are clicked. We use this information to optimize our email newsletters and, as aggregate information, to explain what percentage of our users open and interact with our newsletters.
Personal Data
We only collect personally identifiable information such as your name and email address when you sign up for a newsletter, donate to our organization, or otherwise submit it to us voluntarily. We do not share your personal data with any third parties other than some common service providers, whose products use your information to help us improve our site, deliver newsletters, or allow us to offer donation opportunities.
inewsource limits access to all user data for the purposes of newsletter, fundraising, and customer service only. User data is not sold to or otherwise shared with anyone not working with or for the inewsource.
You may unsubscribe or opt-out of our email and mail communications at any time by hitting the “unsubscribe” button in any email you receive from inewsource, or by emailing us at contact@inewsource.org or calling us at 619-594-5100.
Donor Information
The identities of all donors will be listed on our website. inewsource does not share, trade, sell, or otherwise release donors’ personal information to any third parties.
Refunds
If you encounter errors when donating on the website, please contact us at members@inewsource.org. For example, if you submit a donation for an incorrect amount or make a duplicate transaction please email us immediately so we can reverse the charges.
Cancellation of Recurring Donations
You can cancel your monthly recurring donations free of charge by notifying us at members@inewsource.org.
Links to Other Websites
Our site may contain links to documents, resources or other websites that we think may be of interest to you. We have no control over these other sites or their content. You should be aware when you leave our site for another, and remember that other sites are governed by their own user agreements and privacy policies, which should be available to you to read.
Disclaimers and Limitation of Liability
Although we take reasonable steps to prevent the introduction of viruses, worms, “Trojan Horses” or other destructive materials to our site, we do not guarantee or warrant that our site or materials that may be downloaded from our site are free from such destructive features. We are not liable for any damages or harm attributable to such features. We are not liable for any claim, loss or injust based on errors, omissions, interruptions or other inaccuracies on our site, nor for any claim, loss or injust that results from your use of this site or your breach of any provision of this User Agreement.
Contact Us
If there are any questions regarding this privacy policy, please contact us at contact@inewsource.org or call us at 619-594-5100.