California Hospices Face Lax Oversight and Few Rules. The Sick and The Dying Pay the Price
One day after her 80-year-old mother started hospice care at home last August Tracey Sellers found herself racing into an emergency room pushing a wheelchair carrying her mother.
"The moment we got to the ER, she passed out, her eyes rolled back, her face was white as a sheet," Sellers said about her mother. "And her head rolled back, her face was rolled to the ceiling." " I grabbed her and I said, 'Mom, wake up. Wake up Mom!"
The nurse rushed over to look at her mother's eyes, Sellers said. "Pinholes. They're the size of pinholes."
Hours later with IVs pumping fluids in and out of her, Seller's mother woke up. Sellers discharged her, signing papers listing the reason her mother was admitted. "Narcotic overdose."
Two weeks later, Sellers filed a complaint with the California Department of Public Health , claiming the hospice nurse had brought to their home a bag of opioid painkillers that weren't properly labeled and weren't accompanied with written instructions. She said the nurse gave her verbal instructions that resulted in her mother's overdose.
Then she waited.
The department took 201 days to finish its investigation. By the time it was done, concluding that the hospice did not violate any regulations, her mother had died. Sellers said that no one in the Department of Public Health formally interviewed her or looked at the bag of painkillers she said was brought to the house by the visiting hospice nurse.
In California, where the population is rapidly aging and end-of-life care is on the rise, patient advocates and researchers say the state’s oversight of hospice facilities and hospice care has not caught up. Largely subsidized by federal money through Medicare, hospice care consists of nurses entering hospitals, nursing homes or patients’ homes to ease patients’ pain in their last months of living.
Interviews and documents reviewed by The Sacramento Bee show a system marred by lax oversight and an inability of regulators to take meaningful action against hospices that may have violated rules and jeopardized the health of patients.
Many elderly patients are being transferred to hospice care too quickly, advocates say, taking them away from remedial treatment and costing Medicare more money.
The Department of Public Health has taken months, and in some cases years, to investigate complaints filed for patients who are meant to have six months or less to live.
When the department has investigated complaints and found deficiencies, hospices are not fined, as the state has no penalty system for hospices as it does for nursing homes.
Further, the majority of regular surveys of California hospices are now conducted by private accreditation agencies. Unlike nursing homes, hospices can pay the agencies to inspect them in place of the state, posing what advocates claim is a conflict of interest as the agencies have incentives to approve the hospices that are paying them.
The problems in California mirror what the federal Office of the Inspector General found last month in a report outlining the ways hospices have not complied with federal guidelines. The report found that nationwide, 87 percent of hospices surveyed violated at least one federal guideline. Among the hospices surveyed in California, the number was 94 percent.
The federal report found that hospice workers had left one patient’s pressure ulcers untreated, resulting in gangrene and a lower leg amputation, while another patient in Missouri was discovered with a “maggot infestation” where a feeding tube was inserted into his abdomen.
Patient advocates and researchers say they recognize that the Department of Public Health has a wide mandate that covers a state with 40 million people, but they believe hospice care should not be overlooked. David Stevenson, a health policy professor at Vanderbilt University, said that the people placed in hospice care are exactly the ones that needs the most attention.
“Hospice agencies have escaped close scrutiny and it’s hard to know why,” he said, “given the vulnerable population being cared for.”
Sellers learned of that vulnerability when she discharged her mother from the emergency room. She said the doctor told her to stop giving her mother opioid painkillers, and instead switched her to steroids.
“The doctor said, ‘Don’t give her morphine, it’s too strong for her. If you do that every single day, she’ll die.’ ”
A booming industry
California is on the cusp of a “silver wave.” The California Department of Finance predicts that in 2033, there will be twice as many Californians who are 80 or older as there are today, and in 2043, there will be three times as many. This growth rate is higher than that of any other age group in the state.
As the population ages, the number of people in hospice care has increased. According to Centers for Medicare and Medicaid Services, the number of hospice patients in California covered by Medicare has increased 55 percent in 10 years, to about 71,000 people in 2017.
With that, Medicare spending on hospice care in California has skyrocketed, growing 99 percent in 10 years to reach $1.1 billion in 2017, adjusted for inflation.
Some advocates believe that the growing number of hospice patients could also be attributed to elderly people being transferred to hospice too quickly. Hospice care is meant for people expected to live six months or less, as hospices provide comfort care to ease patients’ pain and not remedial care intended to cure patients of illnesses.
Tony Chicotel, a staff attorney with California Advocates for Nursing Home Reform, said that people could be pushed into hospices by hospitals and nursing homes, which may want to transfer patients to hospice to lighten their workload, and in some cases, to replace patients covered by public insurance with higher-paying patients.
On the receiving end, hospices — particularly ones seeking profit — may be incentivized to admit patients who will stay longer.
A federal Inspector General report published last year noted concerns about the current system of subsidizing hospices, in which Medicare pays hospices for each day a patient is in their care. The report showed that in an analysis of 2013 data, the median length of stay for Medicare patients in for-profit hospices was nearly one month longer than that for Medicare patients in nonprofit hospices.
Among the 1,413 hospices in California, 9 percent are nonprofit.
People working for hospices counter these concerns. Sheila Clark, president of the California Hospice and Palliative Care Association, a trade association representing hospice workers, believes that patients are being transferred into hospice too late.
She said that families of hospice patients tell her they wished they had made the transfer to hospice sooner and that patients are largely in hospice care for less than six months, noting that in 2017, the median length of stay for Medicare patients in California hospices was 31 days. Hospice doctors are also required to regularly check in with patients to determine if end-of-life care would continue to be appropriate for them.
Even for people with family members who are certain to be terminal, though, the process of transferring family members to hospice can still feel rushed.
Last December, Alexander Sheldon transferred his mother, who was being treated for leukemia at O’Connor Hospital in San Jose, to the care of Bridge Hospice, which is run by a limited liability company.
He felt pressure transfer his mother, Sheldon said. “The hospital was pushing me as if my mother was being evicted.”
He also felt that the hospice misinformed him. A representative from Bridge told him that his mother would be able to continue taking her leukemia medication once she went on hospice, he said. However, hospice nurses began giving her the medication only several weeks after she got on hospice care, a few days before she died.
Tere Johnson, executive director of Bridge Hospice’s Bay Area office, said that due to patient privacy laws, Bridge cannot comment about Sheldon’s experience.
Sheldon said he is still frustrated when he thinks back to the hospice representative’s early assurances, and how they did not reflect that staff’s actual treatment of his mother: “There was a disconnect.”
As the population of hospice patients has grown, oversight and regulations have lagged, advocates and researchers say.
One of the main ways the Department of Public Health keeps track of hospice conditions is through investigating complaints filed by patients, their family members or hospice staff — which, in several people’s experiences, has not been done quickly or thoroughly.
After Sellers’ mother experienced an overdose, Sellers sought help from Carole Herman, an advocate at Foundation Aiding the Elderly who helps families file complaints with the Department of Public Health. Herman repeatedly called department officials to get them to investigate Sellers’ claims that Barton Hospice’s nurse left opioid painkillers in Sellers’ home that were not labeled properly or accompanied with written instructions, and then gave verbal instructions that resulted in an overdose.
Sellers said they never visited.
201 days after the complaint was filed, Herman received a notice that the investigation was closed and the department did not find a violation of any regulations.
When asked to comment, the department reiterated the notice, saying “all the allegations were investigated through observations, interviews, and record review. There were no regulatory violations cited.”
Mindi Befu, director of public relations at Barton, echoed the department’s statement, saying that “Barton Health fully cooperated with the investigation.” Citing patient privacy laws, Befu said Barton would not be able to share information about Sellers’ mother’s care.
The Department of Public Health appears to not have the resources to investigate complaints quickly and thoroughly, said Joyce McKee, whose mother was under hospice care with the Milpitas office of VITAS healthcare in January 2017.
McKee attempted to file a complaint because, she said, hospice staff arrived to care for her mother days after her mother’s doctor requested them to come, and just several hours before her mother died. Claudia Quintana, public relations director of VITAS, said VITAS could not comment due to patient privacy laws.
McKee said that when she called the Department of Public Health describing her mother’s situation and asking them to investigate promptly, the department official “would tell me, ‘I want to do all that, I just don’t have the humans to do all that.’”
“She doesn’t have the wherewithal,” McKee said. “They do the best they can but they are completely backlogged.”
The long period of time officials take to investigate could affect the results of the investigation, said Charlene Harrington, a UC San Francisco professor who researches elderly care and used to work in the Department of Public Health.
Investigators with the department “often don’t visit to investigate a complaint in a timely way, and then too often it’s too late to verify things,” she said.
According to data from the department obtained by The Bee, in the past ten years, the department has received 2,209 complaints and has investigated 89 percent number of them. Of the complaints it has investigated, it has taken an average of 62 days, more than two months, to begin investigations once complaints have been filed.
Harrington noted that the amount of time the department takes to begin investigations is not always an accurate measure of the department’s promptness, because investigators may record an early start date but not properly investigate until later.
Data from the department shows that to finish investigations, the department has taken an average of 129 days, more than four months. Seven percent of complaint investigations took one year or longer to finish.
While the department has grown quicker with investigating complaints — for example, for complaints filed in 2018, the department took an average of 31 days to begin investigations and an average of 86 days to finish them — the process is still slow compared to existing policy for nursing homes, which requires the department to close nursing home investigations within 60 days.
Currently, the department is not required to finish hospice investigations within a certain number of days.
The department said it “has continued to improve its timeliness for health facility investigations and is currently implementing new systems to be able to investigate complaints more efficiently.”
No fines, no reforms
When the state does investigate promptly and find deficiencies, the hospice must submit to the state a plan it will follow to correct its faults; however, it does not receive any fines. Researchers and advocates say this means hospices don’t face an effective form of punishment that would prevent them from continuing to mistreat patients.
On the federal level, the only punishment that hospices can receive is the extreme measure of being removed from the Medicare program. Stevenson, a professor at Vanderbilt University, said he believes that federal authorities should institute a penalty system they can use to punish hospices while the hospices are still in business and receiving Medicare subsidies.
He added that it may be possible for states to form their own penalty system, noting that in California, there are “state requirements for nursing homes that go over and above federal standards.”
Currently, California hospices can be fined for disclosing patients’ medical information. No other state penalty system exists.
In 2014, the daughter of a woman who died in the care of Bristol Hospice in Roseville filed a complaint with the Department of Public Health, claiming that under Bristol’s care, pressure sores in her mother’s right leg were left unattended, and the sores developed into sepsis and gangrene that ultimately caused her to die.
While the department found that the hospice did violate regulations through its investigation, it did not issue any penalties.
Records from the Department of Public Health obtained by The Bee show that Bristol Hospice continued to violate regulations even after the department released results of its investigation to Bristol. Eight subsequent complaints were filed by patients’ family members and hospice staff. The department ruled in five of them that Bristol had failed to properly train its staff as well as update or follow treatment plans for patients — the same deficiencies the department found in the daughter’s complaint.
As this was occurring, the daughter continued to pursue a lawsuit she had filed against Bristol soon after her mother died.
Ed Dudensing, the daughter’s lawyer, said the daughter did not give up on the lawsuit for five years in part because she “felt that [the department’s] deficiency finding against Bristol would have absolutely no impact on its conduct going forward.”
“Without a penalty system, Bristol had no fear that its egregious failures in care would result in any interruptions of the operations of this facility,” Dudensing said.
Bristol finally settled. Dudensing said that during negotiations, the daughter demanded Bristol change ownership and Bristol eventually agreed, selling its operations to a different company before the final settlement was reached.
Bristol did not respond to multiple requests for comment.
In the hands of private agencies
Complaints are one way for the state to keep track of hospice conditions, but complaints often do not fully reflect issues in hospices.
“Some people don’t know that you can file complaints at all,” Stevenson from Vanderbilt University said. “Most likely people aren’t thinking about [filing a complaint] after their loved one dies.”
The other key way the state keeps track of hospice conditions is through regular surveys of hospices. To qualify for Medicare subsidies, hospices must undergo surveys every three years. States are tasked with conducting these surveys, but hospices have the option of getting “accredited”: paying private accrediting agencies to survey them in place of the state.
Data from the Department of Public Health obtained by The Bee show that 63 percent of hospices in California are accredited. Nationally, approximately 40 percent of hospices are accredited.
Of all the hospices nationally that are accredited, more than one-third are in California.
Michael Connors, an elderly care advocate with California Advocates for Nursing Home Reform, said that the Department of Public Health has incentives to push hospices toward accreditation , as that “reduces [Department officials’] workload and saves them money if they don’t have to go out and inspect facilities.”
That raises issues, Connors said, because accreditation agencies, which are not required to release their survey results publicly, can pose a conflict of interest.
“Accreditation agencies get their business from these hospices and if they were to make findings and release the findings to the public, the likelihood that hospices to do business with them is very low,” he said. The agencies “rely on a friendly relationship with the hospice entities, not the general public.”
Barton Hospice, whose care Sellers’ mother was under, is currently accredited with The Joint Commission, which has given Barton a “gold seal of approval.” Out of all the accreditation agencies, The Joint Commission surveys the greatest number of hospices in California.
Maureen Lyons, a spokeswoman for The Joint Commission, said ,"Our goal is to protect the public by identifying deficiencies in care and having organizations correct those deficiencies as quickly and sustainably as possible."
Addressing the concern that accreditation agencies’ inspections are not transparent to the public, Lyons said, “While accredited organizations may choose to release their reports, The Joint Commission provides them as confidential reports of our surveyors’ standards deficiency findings for organizations to implement corrections within a specific time frame.”
Lyons added, “Of all health care accrediting organizations, The Joint Commission shares the most information with the public,” noting that The Joint Commission uploads reports on survey outcomes online.
The Joint Commission’s reports rate hospices’ general care in comparison to hospices nationwide and statewide, but do not show what regulations the hospices have violated, if any.
Hospice care is difficult
Hospice care can be one of the most taxing types of care to provide and one of the most anxiety-inducing to see family members experience.
“Due to the short length of stays, hospice workers and the patients and families they serve are stressed with decision-making in an already difficult time,” said Clark, president of the California and Palliative Care Association.
Many advocates and researchers feel that especially because hospice is such a sensitive area of care, reforms need to be made.
“Hospices are rarely inspected,” Connors said. “Most hospice inspections are conducted by private agencies that have strong incentives to ignore poor care.”
“Nothing is done when serious violations are detected,” he continued, “and findings of neglect are covered up.”
People who have come to the difficult realization that their family members are close to dying can often only find peace of mind when they know that their family members will be able to enjoy ease and comfort in their last periods of living.
“If somebody has eight weeks, or nine weeks, or six months, I feel like [hospice staff] should be treating you with pain until you pass away, they shouldn’t be overdosing you,” Sellers said about her mother’s time in hospice.
“I feel like they don’t care if someone dies in hospice before their time,” she continued. “So I feel hurt that they did that.”