The Hospice Industry is Booming, But Concerns Are Rising About Treatments for Patients Who Are Not Near Death.
This story is part of an ongoing WashPost series on the hospice industry in America. Read part 1, part 2, and part 3.
Clinard “Bud” Coffey, 77, a retired corrections officer, did the crossword in The Charlotte Observer after breakfast every morning, pursued his hobby of drawing cartoons, talked seven or eight times a day to his son Jeff and, just two weeks before his death, told a pal that he still felt “like a teenager.”
He did, however, have some chronic back pain, and in late March he was enrolled in hospice care “essentially for pain management,” his doctor said. Over a two week period, he received rising doses of morphine and other powerful drugs, grew sleepy and disoriented, and stopped breathing, dying peacefully at home, according to his family and medical records they provided.
His death certificate, which was signed by the hospice doctor, listed the cause as “renal cell carcinoma” or kidney cancer. But that doctor had never examined Coffey, his family said, and medical records from just a few weeks earlier do not mention it.
“My dad wasn’t dying of cancer,” said his son, Jeff Coffey. “Once he was on hospice, their answer for everything was more drugs. Everything we know about his death is consistent with an overdose.”
An attorney for the hospice company, Curo Health, said it could not comment on the case without authorization from Coffey’s family. When Jeff Coffey authorized the company to comment, however, the attorney said that the company would not comment because the Coffey family had hired an attorney in preparation for a lawsuit.
The hospice industry in the United States is booming and for good reason, many experts say. Hospice care can offer terminally ill patients a far better way to live out their dying days, and many vouch for its value.
But the boom has been accompanied by what appears to be a surge in hospices enrolling patients who aren’t close to death, and at least in some cases, this practice can expose the patients to the more powerful pain-killers that are routinely used by hospice providers. Hospices see higher revenues by recruiting new patients and profit more when they are not near death.
There are no statistics on how often such abuses may be occurring. But complaints from around the country illustrate the potential dangers of enrolling patients in hospice even though they are not near death, the families involved say.
– In South Carolina, famed college football coach Jim Carlen, who was suffering from Alzheimers but could walk with a walker and speak, died days after entering a hospice as an in-patient because, according to family attorney Eric Bland, Carlen’s diabetes and blood pressure medicine were withdrawn and replaced with lethal doses of morphine and klonopin, an anxiety medicine. An attorney for the hospice said they would dispute the allegations.
“We are proud of the care we provide to our patients, including Coach Carlen,” said Sam Outten, Greenville-based attorney representing Tidewater Hospice.
Roseann Gillespie and her daughter, Shalynn Ford Womack, on Roseann’s 90th birthday on October 11, 2011. It was six months to the day before she entered hospice for respite care. (Photo by Nova Ford)
– In Tennessee, Shalynn Womack has testified to the state legislature about her mother, who had been receiving hospice care under a diagnosis of “failure to thrive.” She entered an inpatient hospice for what was supposed to be a brief stay — a “respite” — but died after being given what her daughter called a “toxic cocktail” of morphine and other drugs.
– In Maryland, Beverly Gargiulo, 62, of Pylesville, was admitted to the hospital for ulcers, was mistakenly advised to get hospice care, and then was given excessive doses of pain-killers and died, according to a family lawsuit. A jury last year awarded the Gargiulo family more than $900,000.
The hospital “provided Ms. Gargiulo with compassionate and clinically appropriate care,” a statement from University of Maryland Upper Chesapeake Health said. “We are confident that the case will be overturned on appeal.”
Several other cases document patients who emerged from hospice alive, sometimes with addictions to the pain-killer morphine, which is frequently used in hospice care.
But the harm in enrolling patients in hospice even though they aren’t dying is also financial. Multiple lawsuits have sought to recover more than $1 billion in federal money from hospices that have billed for patients who were admitted but not near death, attorneys said. Medicare rules require that doctors certify that hospice patients are likely to die within six months.
J. Donald Schumacher, president and chief executive of the National Hospice and Palliative Care Organization, said family satisfaction surveys rate most hospice care very highly, “reflecting the high standard of quality care the vast majority of hospices across the nation provide.”
“Hospice is consistently rated as one of the best health care services available to patients near the end of life,” he said.
As the hospice industry has grown, hospices are more frequently enrolling patients who aren’t near death.
To track how often this happens, Medicare, which pays for the vast majority of hospice care in the United States, counts how many patients leave hospice care alive.
At least some of these patients simply get better, unexpectedly. But the proportion of so-called “hospice survivors” has been increasing,
and experts believe some hospices are purposely enrolling and keeping patients who are not actually dying.
For each patient like Coffey, who stayed at home, the hospice can bill the government about $155 a day, regardless of whether anyone from the hospice visits.
At hundreds of U.S. hospices, more than one in three patients were released alive, according to a new study funded by Medicare.
In 2010, for example, more than 63,000 patients left hospice alive, did not re-enter hospice and were still alive six months later, according to the study.
Betty Mathews, 76, a retiree from a Las Vegas casino, was diagnosed last year with colon cancer, received chemotherapy treatments and then was enrolled in a hospice in August 2013. The hospice sent a nurse every Friday, Mathews said.
“I kept telling them to give me a blood test to see if I still had cancer,” Mathews said “They gave me pain-killers but I never took anything. My hair was growing, I was gaining weight. But they wouldn’t give me the test. The hospice people kept coming every Friday. I thought I was going to die.”
Last month, nearly a year after enrolling in hospice, the agency finally did a blood test. It indicated that she did not have cancer, she said.
Had she known she was healthy, “I would have got up out of this bed and started living. I’ve got a new great grand-daughter — and I haven’t even seen her.”
In the fragmented U.S. health-care system, where patients are sometimes shuffled from doctor to doctor and place to place, the details of a patient’s condition can get lost in translation.
Bud Coffey’s diagnosis appears to have changed when he was enrolled into hospice.
The Coffey family provided The Post with records of Coffey’s last visit to his primary care doctor, the notes of the hospice nurses, a list of his medications, hand-written tallies of what drugs family members administered to him and a copy of the doctor’s order referring him to hospice.
For years, he’d been living under the shadow of knowing that he had an aortic aneurysm, a bulge in his body’s critical artery that seemed poised at some point to rupture and cause sudden death. Medical references put the annual risk of an aortic aneurysm like Coffey’s rupturing at 30 to 50 percent.
“It would be fatal almost instantly,” Coffey wrote to a friend in March. But he said he felt healthy, and his interest in life — and the Carolina Panthers — was avid. Videos of Bud Coffey taken just weeks before his death show him out for a drive with his son, slow and frail, but walking with a cane and talking.
On March 17, just a few days before he was enrolled in hospice, Coffey’s primary care doctor listed three diagnoses: an “unspecified disorder” of the kidney, the aortic aneurysm and chronic back pain. The report also noted numerous kidney stones.
The list of diagnoses did not mention cancer. The diagnosis of an unspecified kidney ailment arose after a scan showed a two-centimeter spot on his kidney. Even if it had proven to be cancer, a spot that small is generally considered to reflect an early stage of the disease, doctors said. In rare cases, it could have spread.
On March 20, Coffey’s primary care doctor referred him for hospice care, “essentially for pain management,” because he was taking Percocets and still felt some pain, according to records.
“Hopefully they can manage his pain better,” the notes on his medical record say.
The doctor referred the family to Community Home Care and Hospice, which in May 2012 had been acquired by Curo Health, a company formed through acquisitions by a private equity firm.
When a few days later Coffey was formally enrolled at the hospice, however, his diagnosis appears to have changed. The hospice’s insurance verification form lists the diagnosis as “kidney cancer,” according to a copy of the document. For the hospice to be reimbursed by Medicare, the diagnosis must involve a terminal condition that is likely to lead to death within six months.
Then, throughout the rest of his two weeks under hospice care, workers for the hospice referred to “the cancer,” his family said.
After Bud Coffey refused to eat a hot dog from one of his favorite restaurants, and the next day rejected another of his favorites, “the hospice nurse relayed the doctors message that the cancer was spreading to his stomach,” Jeff Coffey said. “When his neck hurt, they said it had spread to his bones.
“Looking back I can’t believe I didn’t see how ridiculous it was,” Jeff Coffey said.
Bud Coffey was not in extreme pain, according to the medical records. The nursing notes say he ranked his pain as a three on a scale of 10 on some days, and some days as a four.
The response to any discomfort, the family said, was to use more drugs. After rising doses of morphine and other drugs, Bud Coffey appears to have become confused.
Three days before he died, the hospice nurse recorded that Coffey “has not been eating well…has been talking to people who aren’t there…did not recognize a family member today.”
The family, worried, requested that the hospice send a nurse who could stay with him. The request was denied, the family said.
On his last day, the family said they were, under the hospice’s direction, giving Bud Coffey 40 milligrams of liquid morphine every three hours, a substantial increase over his previous dosage, according to notes taken by the family. They had also stopped giving him his breathing medication, the family said.
He died peacefully.
“Patient died at home with family at his side,” the hospice notes say. “Wife reported he was calm when he stopped breathing.”
The next day, the hospice doctor signed the death certificate, listing the cause of death as renal cell carcinoma, or kidney cancer.
The family said the doctor never examined Coffey during his time on hospice, and that based on the manner of his death and other information, the cause of death was not cancer, and not the aneurysm which would likely have caused a sudden death, but the effects of a drug overdose. That much morphine could have been fatal, independent doctors told The Washington Post, but the lethal threshold varies from person to person.
The family was stunned by his sudden decline, Jeff Coffey said. His father may have been, too.
On March 24, he wrote an e-mail to a childhood friend.
“I know that usually hospice is called in only when death is imminent, but hospice was called in this time to monitor my medications, vital signs, etc,” he wrote. “I still feel like a teenager and if I didn’t know what was happening inside me [the aneurysm] I’d feel like I was a perfect example of good health.”
[Peter Whoriskey is a staff writer for The Washington Post. MAIDEN, N.C.
Comment: A similar situation involving excessive sedation, pain medication and pressure to enter hospice happened to a nurse friend last January. She was only 57 and not responsive after a cardiac event. It was terrible. Note at the end, there are 3 more article about hospice in this series. N.Valko RN