‘No one is coming’: Hospice patients abandoned at death’s door

WASILLA, Alaska—As her husband lay moaning in pain from the cancer riddling his body, Patricia Martin searched frantically through his medical bag, looking for a syringe.

She had already called the hospice twice, demanding liquid methadone to ease the agony of Dr. Robert Martin, 66. A family practice physician known to everyone as “Dr. Bob,” he had served this small, remote community for more than 30 years.

But the doctor in charge at Mat-Su Regional Home Health & Hospice wasn’t responding. Staff said he was on vacation, then that he was asleep. Martin had waited four days to get pain pills delivered, but her husband could no longer swallow them. Now, they said, she should just crush the drugs herself, mix them with water and squirt the mixture into his mouth. That’s why she needed the syringe.

“I thought if I had hospice, I would get the support I needed. They basically said they would provide 24/7 support,” she said, shaking her head in disbelief, three years later. “It was a nightmare.”

The Martins had entrusted the ailing doctor’s final days to one of the nation’s 4,000-plus hospice agencies, which pledge to be on call around-the-clock to tend to a dying person’s physical, emotional and spiritual needs.

Yet the hospice care that people expect—and sign up for—sometimes disappears when they need it most. Families across the country, from Alaska to Appalachia, have called for help in times of crisis and been met with delays, no-shows and unanswered calls, a Kaiser Health News investigation shows.

A KHN analysis of 20,000 government inspection records reveals that missed visits and neglect are common for patients dying at home. Families or caregivers, shocked and angered by substandard care, have filed over 3,200 complaints with state officials in the past five years.

Those complaints led government inspectors to uncover problems in 759 hospices, with more than half cited for missing visits or other services they had promised to provide at the end of life, KHN found.

The horrifying reports, which do not include victims’ names, describe a 31-year-old California woman whose boyfriend tried for 10 hours to reach hospice as she gurgled and turned blue, and a panicked caregiver in New York calling repeatedly for middle-of-the-night assistance from confused hospice workers unaware of who was on duty. In Michigan, a dementia patient moaned and thrashed at home in a broken hospital bed, enduring long waits for pain relief in the last 11 days of life, and prompting the patient’s caregiver to call nurses and ask, “What am I gonna do? No one is coming to help me. I was promised help at the end.”

Only in rare cases were hospices punished for providing poor care, the investigation showed.

Using death records and public records searches, KHN identified some victims of the worst abuse detailed in the complaints and interviewed surviving family members.

Contacted by KHN, Patricia Martin tearfully said she’d given up hope that anyone would take seriously her complaints about her husband’s care. She had enrolled him in hospice when the metastatic prostate cancer reached his brain, expecting the same kind of compassionate, timely attention he had given his own patients.

But Bob Martin had the misfortune to require care during a long holiday weekend, when hospices are often too shortstaffed to fulfill written commitments to families. It took six days and three more calls before he received the liquid methadone he needed. Hospice denied his wife’s requests for a catheter, and she and her son had to cut away his urine-soaked clothing and bedding, trying not to cause him additional pain. The supervising hospice doctor never responded. A nurse who was supposed to visit didn’t show up, saying she was called for jury duty.

Bob Martin died just after midnight on Jan. 4, 2014. Six weeks later, his wife filed a complaint against Mat-Su Regional with the Alaska Department of Health and Social Services. An investigation concluded that the hospice failed to properly coordinate services, jeopardizing his end-of-life care. Hospice officials declined interview requests.

“It was just sheer chaos,” Patricia Martin said. “It makes me wonder about other people in this situation. What happens to them?”

Hospice is available through Medicare to critically ill patients expected to die within six months who agree to forgo further curative treatment. The care is focused on comfort instead of aggressive medical interventions that can lead to unpleasant, drawn-out hospital deaths.

It’s a booming industry that served about 1.4 million Medicare patients in the U.S. in 2015, including over a third of Americans who died that year, according to latest industry and government figures.

Although many people think of hospice as a site where people go to die, nearly half of hospice patients receive care at home, according to industry figures.

The mission of hospice is to offer peaceful, holistic care and to leave patients and their loved ones in control at the end of life. Agencies receive nearly $16 billion a year in federal Medicare dollars to send nurses, social workers and aides to care for patients wherever they live. While the vast majority of hospice care is covered by Medicare, some is paid for by private insurance, Medicaid and the U.S. Department of Veterans Affairs.

To get paid a daily fee by Medicare, hospice agencies face many requirements. They must lay out a plan of care for each patient, ensuring they’ll treat all symptoms of the person’s terminal illness. And they’re required to be on call 24/7 to keep patients comfortable, but because each patient is different, there’s no mandate spelling out how often staff must show up at the home, except for a bimonthly supervisory visit. Hospices must stipulate in each patient’s care plan what services will be provided, when and by whom, and update that plan every 15 days. Hospices are licensed by state health agencies and subject to oversight by federal Medicare officials and private accreditation groups.

At its best, hospice provides a well-coordinated interdisciplinary team that eases patients’ pain and worry, tending to the whole family’s concerns. For the 86 percent of Americans who say they want to die at home, hospice makes that increasingly possible.

But when it fails, federal records and interviews show it leaves patients and families horrified to find themselves facing death alone, abandoned even as agencies continue to collect taxpayer money for their care.

In St. Stephen, Minn., Leo Fuerstenberg, 63, a retired Veterans Affairs counselor, died panicked and gasping for air on Feb. 22, 2016, with no pain medication, according to his wife. Laure Fuerstenberg, 58, said a shipment sent from Heartland Home Health Care and Hospice included an oxygen tank, a box of eye drops and nose drops, but no painkillers.

“They were prescription drugs, but it didn’t say what they were or how to give them,” she recalled. “I just panicked. I called the hospice, and I said, ‘ We’re in trouble. I need help right away.’ I waited and waited. They never called back.”

For more than two hours, she tried desperately to comfort her husband, who had an aggressive form of amyloidosis, a rare disease that affects the organs. But he died in her arms in bed, trapping her under the weight of his body until she managed to call neighbors for help.

“That last part of it was really horrible,” she said. “The one thing I promised him is that he wouldn’t be in pain, he wouldn’t suffer.”

Later, state investigators determined that Heartland’s on-duty hospice nurse had muted her cellphone, missing 16 calls for help. Hospice officials did not respond to repeated interview requests.

“They never followed their protocol, and I’ve never had anybody from there say ‘We failed, we were wrong,’” said Fuerstenberg, a school counselor who said she relives her husband’s death daily. “If that had been me on my job, I’d be fired.”

Her account was among more than 1,000 citizen complaints that led investigators to uncover wrongdoing from January 2012 to February 2017, federal records show. But experts who study hospice say many more families may be too traumatized to take further action.

The complaints offer only a glimpse of a larger problem, warned Dr. Joan Teno, a researcher at University of Washington in Seattle who has studied hospice quality for 20 years. “These are people who got upset enough to complain.”

Officials with the National Hospice and Palliative Care Organization (NHPCO), an industry trade group, said that such accounts are inexcusable— but rare.

“I would venture to say whatever measure you want to use, there are an exponential number of positive stories about hospice that would overwhelm the negative,” said Jonathan Keyserling, NHPCO’s senior vice president of health policy.

When you serve over a million people and families a year, “you’re going to have instances where care could be improved,” he added.

But even one case is too many and hospices should be held accountable for such lapses, said