TAMPA — The 85-year-old hospice patient was close to death.
Ying Tai Choi lay on a hospital bed arranged in the living room of her daughter’s house. A pulse oximeter pinged an intermittent warning about her oxygen levels. She heaved for breath sometimes and panted at others. Sounds of gurgling and congestion came from her throat. The skin behind her fingernails was turning dark.
“She is leaving soon,” the hospice nurse told Choi’s daughter.
Then the nurse left the house and drove away, even though the hospice had said it would provide Choi with “continuous care,” according to records. “No relief arrived at this time,” the nurse wrote in her notes, according to state investigative documents. “Exiting the residence.”
Choi’s daughter Ching Cheung was stunned. She tried giving her mother a few drops of water, but she felt helpless. “I kept calling hospice and they said no one is available,” Cheung said. “My mother was struggling. It was terrible.” Her mother died within an hour.
For more than a million patients every year, the burgeoning U.S. hospice industry offers the possibility of a peaceful death, typically at home. But that promise depends upon patients getting the medical attention they need in a crisis, and hundreds of hospices provide very little care to such patients, a Washington Post investigation has found.
To better understand the quality of services rendered to terminal patients, The Post analyzed the Medicare billing records for more than 2,500 outfits, obtained an internal Medicare tally of nursing care in patients near death and reviewed complaint records at hundreds of hospices.
The scarcity of care affects the patients most in need. While many home hospice patients require little more than weekly nursing visits, some encounter crises in which their symptoms — pain, breathing troubles, seizures and so on — flare up in ways that cannot be controlled without sustained attention. For those cases, hospices are supposed to be able to provide either “continuous” nursing care at home or inpatient care at a medical facility.
But about one in six U.S. hospice agencies, serving more than 50,000 of the terminally ill, did not provide either form of crisis care to any of their patients in 2012, according to an analysis of millions of Medicare billing records. The absence of such care suggests that some hospice outfits are stinting on nursing attention, according to hospice experts. Inspection and complaint records, meanwhile, depict the anguish of patients who have been left without care.
Some were tormented by pain. Others had breathing difficulties, with some unable to get an answer about why their oxygen tanks weren’t working. And some were compelled to leave their homes, formally drop hospice services and head by ambulance to the emergency room, a notoriously difficult place for the frail and dying.
Indeed, at 445 hospices, a third or more of patients died without having seen a skilled nurse in the 48 hours before their death, according to 2012 Medicare internal statistics obtained by The Post.
The trouble, in part, may be a matter of economic incentives posed by Medicare payment rates. Providing patients with “routine” levels of care, which typically includes semiweekly nursing visits, can be very profitable. But providing continuous bedside nursing care or inpatient care to needier patients can be a financial and logistical drain for small and mid-size agencies, hospice owners said.
Cheung said the LifePath hospice agency told her that its nursing staff is sometimes stretched. “When I called for help, the hospice kept saying they didn’t have enough nurses,” Cheung said. “I kept thinking, ‘Then why did you take so many patients?’ ”
A LifePath spokesman, Patty Klein, declined to comment on Choi’s case, citing privacy laws. Records show that the hospice provides continuous care and general inpatient care to many patients. The nurse who left Choi in the hour of her death was not one of its employees but a nurse under contract, administrators told investigators. In a statement, officials said: “Continuous home care is provided as the need arises and as included in the patient’s plan of care. It is LifePath Hospice’s policy to support the hospice patient and family at all times, including when a patient is actively dying.”
J. Donald Schumacher, president of the leading hospice association, the National Hospice and Palliative Care Organization, said he thinks the problem is not “pervasive” and that it stems in part from a lack of regular hospice inspections. He and some researchers believe that the majority of hospices are providing quality care. Indeed, many nurses in the field consider palliative medicine as much a calling as a job.
There is some evidence, however, that a significant group of hospices is operating outside industry norms. A Medicare statistical review shared with hospice leaders in March showed that a group of a few hundred hospices consistently ranked as outliers when aspects of their patient care and billing were measured.
“Even one case of a patient not receiving the care necessary to address pain and symptoms is one too many and is unacceptable,” said Schumacher. “But such examples, however painful to read, do not represent the majority of hospice providers or the hospice community as a whole.”
The fact that hospices differ on how to treat a dying patient may be at least partly due to the relative newness of the service.
The hospice movement took root in the United States in the 1970s, offering a philosophical reorientation for patients who are expected to die. It shifted the focus away from trying to “cure” a terminal patient and aimed instead to make the patient comfortable at the end of his or her life. It discourages frenetic, invasive end-of-life care. Ideally, it enables the patient to die at home, an option preferred by most Americans with serious illness.
While the first hospice practitioners were often part of religious and community groups, for-profit outfits have come to dominate the industry, making up about three-quarters of the field. This is at least in part because in 1982, Congress enabled Medicare to pay for hospice services. Today, the industry takes in more than a million patients and $17 billion annually. The vast majority of that revenue comes from the government.