Suffering from painful nerve damage in his feet, Charles Groomes was prescribed a daily dose of 205 milligrams of Oxycontin and oxycodone in 2007. His doctor wrote that it was the most he was comfortable prescribing — more, he said, than anyone without cancer should take.
After he was admitted to hospice care 11 months later, his painkillers were eventually increased to 2,880 milligrams, 14 times the pre-hospice levels. The hospice doctor forecast he had six months to live at most. He was wrong.
Groomes was discharged from Horizons Hospice in Pittsburgh last year after 32 months. The legacy of the stay was debilitating, according to his family and doctors who examined him. He was depressed, addicted to narcotics and desperate. He turned to four doctors and three hospices begging for more drugs.
“This is a hospice case that spiraled out of control,” said Aaron Smuckler, one of the doctors who saw him. Groomes, who had a history of drug abuse, “clearly wasn’t dying” when he was on hospice; he needed drug rehabilitation and cardiac care, not more narcotics, Smuckler said.
Mary Stewart, Horizons Hospice’s director of operations, declined to comment on Groomes’ care and didn’t respond to a list of detailed questions.
Groomes died in his sleep at the age of 52 last August, 10 months after Horizons released him. It was also more than five years after he was first told he had six months to live — in an earlier hospice admission in 2006.
His story shows how lax admissions practices combined with narcotics dispensing may add up to harmful side effects for hospice patients, especially among those who survive their stays. About 1.1 million people are enrolled in hospice care.
Although hospices are supposed to enroll only people who they believe will be dead within 180 days, they often miss the mark. About 21 percent of patients stay longer, the U.S. inspector general responsible for Medicare reported in July, and more than 200,000 are discharged alive each year. Some providers are boosting revenue by flouting eligibility rules, federal prosecutors say.
At the same time, the use of narcotics is central to the mission of hospice care, which is to ease the pain of dying patients.
“It’s the exceptional hospice patient who doesn’t see any opioids,” said Mark Sullivan, a psychiatrist at the University of Washington in Seattle, referring to the powerful class of narcotics that includes morphine, Oxycontin and oxycodone.
Drug addiction among those who leave hospices has become more common in recent years, according to Walter Ling, a professor of psychiatry and director of the substance abuse program at UCLA. “Everybody who works in the drug rehabilitation field finds these hospice cases,” Ling said.
“Hospices over-prescribe narcotics to patients who aren’t in extreme pain,” said Jane Orient a physician and professor at the Oregon Institute of Science and Medicine in Cave Junction, Ore. She said her family removed her father from an in- patient hospice when it gave him morphine he didn’t need.
The discharge of 200,000 hospice patients raises the question of whether they were really dying in the first place, said Robert Berenson, a fellow at the Urban Institute and the vice chairman of Medpac, an advisory commission to Congress on health-care policy.
“The potential for hospices to neglect these people, and then abandon them when they don’t decline, is a major quality challenge,” Berenson said. Told of the details of Groomes’ case, he said it “may be the tip of a very big iceberg.”
It’s “wrong” to assume that everyone who survives hospice was inappropriately admitted, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization, an industry trade group.
Some patients are truly dying when they are enrolled, but “respond very favorably” to care and become “somewhat better,” Radulovic said. Other patients leave hospice because they move away or defy their doctors’ expectations. Opioids are “prevalent” in hospice care because they tend to be inexpensive and highly effective in treating pain, he said.
More than half of hospice patients receive their care at home, as Groomes did. Most others are at nursing homes or hospitals. Nurses and hospice staffers visit an average of once a day, research shows. Doctor visits are rarer — once every 100 days or so, according to Medicare billing records.
Groomes’ wife and two of their four daughters say they saw Oliver Herndon, his hospice doctor, fewer than five times in the almost three years Charles was last on hospice. Months would go by when they didn’t see a nurse or home-health aide, either, they said.
“They told him to stay in bed, relax,” said his daughter Ashley, 17. “They kept him caged up in his room like an animal, waiting for him to die.”
Herndon, through his lawyer, declined to comment or answer questions about Groomes’ care.
Based on average daily reimbursement rates, Groomes’ two-year stay at Horizons cost Medicare an estimated $100,000. Medicare also paid for eight months at the beginning of his stay at a now-defunct hospice where Herndon worked, which transferred him to Horizons.
What happens to hospice survivors like Groomes, after months or years of giving up curative care, has never been comprehensively studied, said Russell Portenoy, chief of pain medicine at Beth Israel Medical Center in New York. “This is a study that begs to be done,” he said.
The rate of live discharges is highest at for-profit hospices, whose rapid growth in the past decade quadrupled Medicare’s hospice bill between 2000 and 2010, to $13 billion a year. More than one in five patients at for-profits are discharged, compared with about one in eight at nonprofits, according to a Harvard study published this year.
For-profits also keep hospice patients longer — an average of 98 days versus 68 days at nonprofits. Under Medicare rules, people can stay on hospice indefinitely, as long as a hospice doctor recertifies, every 60 days, that they have a prognosis of six months or less to live.
“The long lengths of stay and high rates of live discharges suggest some hospices are signing up people who don’t belong in hospice,” said Nancy Kane, a professor of health policy at Harvard and a former member of Medpac. “Any time there is money to be made, and you have this nebulous, gray area around ‘who is terminal,’ you get manipulation by some providers.”
Robert Spain Jr., an unemployed boat captain, said his 10- month stay in hospice care turned him into an addict. Spain was admitted to a Vitas Healthcare hospice in Jupiter, Fla., at the age of 56 in 2008, and diagnosed with terminal cirrhosis, his medical records show. He acknowledges a prior history of drug abuse.
Vitas, a unit of Chemed Corp. that is the nation’s largest hospice operator, put Spain on 240 milligrams a day of morphine, according to the records. That was stronger stuff than he had ever been prescribed before, he said, and after a few months he was feeling better and was puzzled why anyone thought he was dying.
When he asked for tests, Vitas ordered a sonogram, “reversed” Spain’s diagnosis to gallstones, and discharged him in January 2009. Still jobless and living with his 86-year-old dad, Spain said Vitas did nothing to help him get off the narcotics. He still takes 180 milligrams a day of morphine prescribed by a pain doctor.
Spain was admitted appropriately to hospice and discharged when he was no longer eligible, said Kal Mistry, Vitas’s spokeswoman. Vitas “referred him to an appropriate care intervention clinic” before discharge, she said.
Groomes met his wife, Donna, while he was working as a bouncer for a bar in their hometown, Penn Hills, Pa. He spent most of his career working for his father’s business, servicing fire extinguishers and indoor sprinkler systems, said his daughter Austi, who is 22.
While Groomes’ death certificate says heart failure, Donna said she believes he may have swallowed a bottle of 80-milligram Oxycontin pills that went missing. There was no autopsy.
“The doctors failed us something terrible,” she said. “This family went down in a whirlwind.”