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 LLC 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’s 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.
Hospice Drug Addiction
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 the University of California at Los Angeles. “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, Oregon. 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.
Potential for Neglect
“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’s 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’s 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’s care.
Based on average daily reimbursement rates, Groomes’s 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 University 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.”
Boat Captain’s Story
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, Florida, 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, Pennsylvania. 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.
When she was a child he’d leave at dawn and return after 8 in the evening. The kids went to summer camp and every year Charles would pack the family in the station wagon for a beach trip to the Jersey Shore or the Carolinas.
Groomes’s wife said she and her husband started using cocaine in 1996, when some childhood friends re-entered their lives and smoked crack with them. Both parents became abusers, according to Donna and Austi, and things got rough. There were arguments about drugs. At times, the daughters were placed in foster care, Austi said.
In 2005, after years of heart disease, Groomes had a defibrillator implanted in his chest to prevent cardiac arrest. The next month an echocardiogram showed his heart’s ejection fraction was 15 percent, meaning it was pumping blood at a dangerously low rate. A normal ejection fraction exceeds 55 percent.
In a hospital in September that year, Groomes tested positive for cocaine, twice. He wasn’t a model patient. He was getting morphine “off the streets” and ignoring prescribed dosages, according to his cardiologist’s notes.
By February 2006, Groomes had enrolled in the now-defunct Trinity Hospice, where he became a patient of Herndon’s, said Leslie Custer, Groomes’s nurse there. He withdrew from the hospice in mid-2006 to explore a possible heart transplant.
While doctors told Groomes he wasn’t a transplant candidate, his heart was strengthening on its own. A test in August 2006 revealed normal cardiac output, according to his records. An echocardiogram in December 2006 showed an ejection fraction of 35 percent to 40 percent, more than double the rate 15 months earlier.
Groomes also had severe pain in his feet, which doctors diagnosed as diabetic neuropathy, or nerve damage. By March 2007, he was receiving Oxycontin and oxycodone via Albert Carvelli, the doctor at the University of Pittsburgh Medical Center whose notes described the dosages as the maximum he felt comfortable with.
Even so, Groomes started running short of pain pills and began asking Carvelli for more before his prescriptions were due to run out, according to the doctor’s notes. After that happened five visits in a row, Carvelli’s notes from February 2008 say he told Groomes he needed to find another doctor or “we will start to slowly wean him off his opioid” habit.
Back on Hospice
The next day, Groomes was re-admitted to Trinity Hospice, with a terminal diagnosis of congestive heart failure. Herndon, acting as the hospice medical director and Groomes’s attending physician, tripled Groomes’s prescriptions for oxycodone and Oxycontin, to a maximum dose of 600 milligrams a day, according to Groomes’s medical records. Later, Herndon prescribed an additional 1,680 milligrams a day of liquid morphine and oxycodone for “breakthrough” pain, plus a 100-microgram patch of Fentanyl, a potent narcotic, every 72 hours.
When Trinity shut down in late 2008 -- after the U.S. Justice Department said it found evidence of “substantial” Medicare losses from ineligible hospice admissions -- Herndon took his patients to Horizons Hospice of Altoona, Pennsylvania, according to Susan Seman, who was director of operations for Trinity’s Pittsburgh office.
On Groomes’s hospice certification at Horizons, signed by Herndon, the doctor wrote Groomes had a cardiac ejection fraction of 10 percent, which hadn’t been the case since 2005, according to the echocardiogram results in Groomes’s medical records. An ejection fraction of less than 20 percent is a Medicare criterion for hospice eligibility.
Herndon noted the 10 percent ejection fraction in re-certifications to extend Groomes’s stay that he signed as Horizons’ medical director in 2010, copies of the documents show. Herndon also cited other eligibility criteria, noting that Groomes was bedbound and had chest pains and shortness of breath after minimal exertion.
Groomes, 6-foot-6 (1.98 meters) and more than 300 pounds (140 kilograms), was virtually an invalid after his re-admission to hospice, deadened by drugs and terrified he’d keel over and die if he left his bedroom, according to Donna, Austi and Ashley. Groomes had gone on federal disability in 2004 for his heart and pain conditions, Donna said.
He felt “worthless” for lying there, but the hospice prognosis that he was dying destroyed his will to go on, she said. In a “good-bye” video the hospice encouraged Groomes to make, he sobbed uncontrollably and could hardly speak.
Donna didn’t leave her husband’s bedside, even as their daughters “ran wild,” she said. Boyfriends came and went, and the four girls had six babies in their teen years. Three were born when their mothers were 16.
Medicare Coverage Expires
Three of the daughters developed their own addictions, Donna said, and two have had scrapes with the law, including Autumn, 25, now in jail for drunk driving.
Groomes told a Horizons counselor that one of his biggest worries was that Donna would relapse and use cocaine again after his death. Donna said in an interview that she has been clean for seven years.
After more than two years waiting to die, Groomes received a letter from Horizons saying his hospice coverage from Medicare was ending. His hospice nurse said he was being discharged because he wasn’t declining, Donna said. The family was told to find a new doctor.
She and Austi begged Herndon’s office to keep Groomes as a patient so the doctor could keep prescribing. His dependence on drugs was so severe, they said, they feared a harmful withdrawal without them. When the doctor’s assistants hung up on them, Donna and Austi decamped to Herndon’s office to plead their case, only to be told the doctor wasn’t around, Austi said.
Search for Medicine
“He had my dad on all those things, then basically shut him off,” said Austi, who has an associate’s degree in criminal justice and is unemployed. “He helped kill him.”
As Groomes’s medications were running out, Donna scrambled on the Internet to find a doctor or hospice to take him on. Hope Hospice, a Pittsburgh nonprofit, referred her to Smuckler at the University of Pittsburgh Medical Center for an evaluation. Smuckler made an 80-minute house call.
Groomes’s bedside table was strewn with pill bottles, while his physical exam “was not consistent with someone who had such a terrible cardiomyopathy,” Smuckler said, referring to the heart muscle weakening. “He hadn’t had a primary-care physician in four years. I wanted proof he had the conditions he had.”
Blood tests showed his diabetes was well controlled and other functions appeared normal, Smuckler said, “certainly not the kinds of results you’d expect from a hospice patient.” Smuckler referred Groomes to a cardiologist for tests, lowered his narcotic dosage and recommended methadone to help taper off the opioids.
After examining Groomes, cardiologist Jeff Krackow wrote in a report that he may be bedbound “by his own choice” which has made him “severely deconditioned” yet had no “compelling indication for hospice,” and proposed re-evaluating him for a heart transplant.
The cardiologist also suggested reactivating Groomes’s defibrillator. Herndon and Horizon never had it turned back on after it malfunctioned and shocked Groomes 15 times on a single day in 2009, his hospice records show.
A workup in January this year confirmed what Smuckler and Krackow had surmised: Groomes’s heart was fine. The ejection fraction was 65 percent.
“He absolutely did not have a terminal diagnosis,” Smuckler said.
The next problem was returning Groomes to the living. Groomes and his wife resisted Smuckler’s suggestions to try physical and occupational therapy. They demanded more narcotics, and after Groomes twice ran short of pills ahead of schedule, Smuckler told the couple they’d have to see a pain clinic for more.
“She infantilized him,” Smuckler said. “Every time he twitched, she would medicate it.”
The pattern kept repeating in the next eight months. Groomes went to a pain doctor, a neurologist, several emergency rooms and two more hospices, seeking narcotics that he said he needed for intractable pain. The question all of them asked, Donna said, was how such a young man ever got to this point.
“No one qualified in palliative care should have ever allowed Mr. Groomes to come back on hospice in 2008,” said Cristen Krebs, executive director of the Catholic Hospice of Pittsburgh, who evaluated Groomes for hospice and reviewed his medical records. “If he had terminal heart failure in 2006, what was he doing standing there in front of them in 2008? His cardiac status had improved, but they neglected to find out.”
Hope Runs Out
By August, Groomes lost hope, said his wife and daughters. None of the doctors or hospices they’d seen would refill the prescriptions Herndon wrote during 32 months in hospice. Groomes prayed on the side of his bed to die, Ashley said. He told Donna to “let him go,” she said. She urged him to hold on for a group of specialists due at the house Aug. 16 for a patient evaluation.
The team from Family Hospice & Palliative Care, led by physician MaryBeth Salama, spent 90 minutes examining Groomes and reviewing his health history. They told Groomes he wasn’t dying, so he couldn’t go back on hospice, according to Donna. The bad news was he needed to learn to live with his pain.
Groomes died that night in his sleep. While his 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.”
(Editor's Note: A lawyer for MaryBeth Salama says the doctor spent extensive time during the consultation reviewing Groomes's non-hospice options with him in order to help him minimize and manage his pain.)