On a sunny Saturday morning in April, Barbara Rourke gazes toward the sea out her balcony windows. Her fourth-floor condominium on Ocean Boulevard in Pompano Beach offers a splendid view, although it's hard to tell whether she enjoys the seascape. She's a gray-haired wisp of a woman who spends her time either in bed or in a wheelchair; the latter has an attached tray table to keep her securely in place. Rourke moves her arms nervously at times, sometimes stroking her face and shoulders. The 68-year-old doesn't communicate by words anymore, though her eyes convey understanding and recognition at times. Doctors say Rourke is dying. She is in hospice care, which is end-of-life care intended to comfort rather than to cure.
Her husband died early last year after suffering a heart attack and then lingering on a life-support machine for eight months. Around the same time, she fell while walking on a sidewalk and was hospitalized for a possible broken hip. Since September, Rourke's daughter, Candess Rollins, and her husband, Joe Moran, have lived with her in the now-cluttered condo. Rollins quit her nursing job to care for her mother full-time. The living room furniture has all been shifted toward the balcony to make room for a U-shaped computer desk and file cabinets. The open space is just enough for a wheelchair to pass through.
"We have a visitor," Rollins says to her mother. Rourke studies the guest's face, then smiles warmly. "You look like one of her sons," Rollins explains to the New Times reporter. "We're going out on the balcony for a while," she says, leaving her mother with the weekend attendant, Doreen.
Rollins, whom everyone calls Candi, closes the sliding glass door behind her because Rourke is easily disturbed by conversations about her own health. Rollins isn't sure whether her mother understands the words or simply perceives the mood of the dialogue. Rollins is svelte. She sports shoulder-length blond hair and manicured nails. She's deeply tanned, and at age 36, her skin shows little damage from the Florida sun. The 42-year-old Moran is tall and bearded. His wife does most of the talking this morning, but he regularly chips in with exclamations of disbelief and revulsion.
The irony of it all, Rollins points out, is that the hospice intended to provide comfort and care for Rourke in her last days has, as with other families who have entrusted a loved one to Vitas Healthcare Inc., brought anguish instead.
Last September, a physician with the nursing home at which Rourke lived deemed her as "failing to thrive" and recommended a consultation with Vitas Healthcare. "They said Vitas was the hospice they worked with," Rollins recalls. "The social workers in the [nursing home] called it their hospice of choice, I guess."
A Vitas employee soon met with Rollins, Moran, Rourke, and a family friend. "We were sitting with my mother, and she was fairly alert," Rollins says. "The Vitas rep said, 'This is a very complicated case.' Then she asked, 'Does she eat?' We said, 'Yeah,' because we were, like, proud of that. She said, 'That's going to have to stop.' She was 70 pounds at that point."
Moran interjects, "I was freaking out. I said, 'You mean to tell me we're going to starve my mom to death? You're barking up the wrong tree. '"
Rollins says the rep explained that under Medicare guidelines, demonstrated weight loss is required to justify reimbursements to Vitas. "She said this in front of my mother," Rollins said, "and she was getting agitated."
Rollins and Moran felt confused about what to do, but they were certain they wanted their mother at home. Despite the bad start, they believed that Vitas could help them through the difficult time ahead.
What they didn't know then was that they'd signed on with Florida's only for-profit hospice, a company whose bottom line has at times led to hyperaggressive recruitment of patients. According to documents filed with the Securities and Exchange Commission, most of the company's revenues come from reimbursements by Medicare or Medicaid, the taxpayer-funded health-insurance programs for the elderly and poor. In the late 1990s, the Office of the Inspector General for the U.S. Department of Health and Human Services investigated those reimbursements for long-term cases and concluded that Vitas routinely enrolled patients who were not medically eligible -- in other words, they likely had more than six months to live. Since then, the company's demand for increased revenues has led to more pressure for referrals and enrollments, says one former employee, which has led to an overall decline in adequate care.
"They are not exaggerating in the least," Shelley Hines says of Rollins and Moran. Hines' 86-year-old grandmother, Dixie Moore, died in April after being referred to Vitas while at Plantation General Hospital. Moore had suffered a stroke and could not communicate, but she did continue to eat, Hines says. During the following six weeks, Vitas sent a procession of different aides who were there around the clock, but Hines complains: "The first day they came on, the feeding stopped. They just came and did nothing. There was no program. They didn't expect her to make it very long." Hines and other grandchildren kept feeding Moore baby food, until what was apparently another stroke ended her ability to swallow.
Still, Hines believes that her grandmother should have received nourishment of some kind. "We knew that this was not a rehabilitative process, but wouldn't you think that you'd feed every living being?" Hines asks. "They literally starved her to death."
Dian Backoff, general manager of Vitas in Broward County, says that such perceptions are common among families unfamiliar with hospice care. "The emotional stress level is so high," she says. "They perceive things like, 'Oh, hospice is going to starve my mom to death.' We don't aggressively force-feed patients. This is about patient comfort. We don't want to starve patients."
The roots of Vitas Healthcare can be traced to the very infancy of the hospice movement, which began in the early 1970s in England. Medical advances after World War II allowed doctors to extend the lives of patients through artificial life support or radical new therapy and treatment. Some, however, believed that such measures ignored the inevitability of death and sometimes left patients to suffer needlessly. Hospice intended to reintegrate death as part of life.
In 1978, Hugh Westbrook, a Methodist minister, and Esther Colliflower, a nurse, established Hospice of Miami, the first in South Florida. With the aid of local legislators, Westbrook lobbied for the creation of a special license for hospice. The bill passed in 1979 and required hospices to operate as nonprofits. Around the same time, Hospice Inc. became part of a federal pilot program to test whether hospice could keep health-care costs down. A bill expanding Medicare coverage for hospice passed in August 1982. By the end of the 1980s, Westbrook had opened hospice programs in Houston, Fort Worth, Chicago, and Boston.
Westbrook wanted to convert his entire Florida operation into a for-profit business, just like other Westbrook facilities around the country. To accomplish this switch, he recruited long-time friend and state representative Mike Abrams. During the 1989 legislative session, Abrams offered an amendment providing that "any hospice operating in corporate form exclusively as a hospice, incorporated on or before July 1, 1978, may be transferred to a for-profit or not-for-profit entity, and may transfer the license to that entity." Westbrook's Hospice Inc., formed on June 13, 1978, was one of only three hospices incorporated before the cutoff date. (The other two were in Pinellas and Orange counties and posed little threat to Westbrook's South Florida operations. Neither converted to for-profit.) The amendment gave Westbrook a monopoly on for-profit hospice care in South Florida. The company was renamed Vitas Healthcare in the early 1990s.
Profiting from the dying, however, can lead to ugly excesses. In August 1990, the Chicago Tribune obtained several memos issued by Hospice Care Chicagoland, which was Westbrook's for-profit operation in Illinois. The memos described cash bonuses paid to nurses who recruited patients and directed staff members to send as many patients as possible to inpatient hospice beds to increase revenues. At least a dozen employees quit because they considered the practices unethical. At that time, Medicare reimbursements for at-home hospice care was $87.24 a day, while the inpatient rate per day was $384.60. The Tribune reported that former team directors and admissions counselors from Hospice Care Chicagoland said they were pressured to enroll unqualified people into the program, claims that HCI officials denied. Other former staff said Chicagoland's nurses received bonuses of $10 to $20 for each new patient recruited from hospitals, nursing homes, or doctors' offices. In a follow-up article, the Tribune reported that Chicagoland admission counselors hungrily perused nursing-home records in search of eligible patients for recruitment.
The Office of the Inspector General for the U.S. Department of Health and Human Services subsequently investigated the Tribune's allegations. Its findings were released in April 1991. "Investigation revealed that [HCI] employees felt undue pressure was put on them by management to hospitalize patients," the report stated, adding that employees in other regions had complained about pressure to enroll patients. The report also audited billing for 11 HCI in-hospital patients and determined that the company had been overpaid more than $54,000 by Medicare for those patients alone.
The Office of Inspector General (OIG) for the federal agency began investigating the growing field of hospice care in 1994, beginning with two hospices in Puerto Rico. Concentrating on cases that had been active for more than 210 days and cases in which beneficiaries had been discharged for reasons other than death, the inspector's office found that more than 70 percent of the cases reviewed were ineligible for hospice. Hospices were enrolling patients with chronic, non-life-threatening illnesses. Medicare payments for those cases exceeded $2.6 million. A subsequent review of all 37 hospice providers in Puerto Rico estimated that $19.7 million had been paid out on behalf of ineligible patients.
The findings prompted a joint initiative in 1995 called Operation Restore Trust, which was conducted by the inspector general's office, the Health Care Financing Administration (which oversees Medicare), and the Administration on Aging. Among its investigations, the operation focused on 12 hospices in Florida, Illinois, Texas, and California. Half belonged to Vitas Healthcare. In November 1997, the inspector general concluded that the problems discovered in Puerto Rico were widespread. The review found that 60 to 85 percent of long-term cases served by Vitas had been ineligible for hospice benefits.
Among the reasons ineligible patients were routinely categorized as terminally ill, the report said, were aggressive marketing and sales techniques. During 1994 and 1995, Vitas paid more than $1 million in commissions, based upon patients' length of stay in hospice, to about 100 sales staff in its nationwide operations. Top salespeople earned up to $100,000 a year. The report noted, "We recognize that effective marketing techniques are essential to health care providers that compete with one another for business. Commission payment systems such as the one used by this chain, however, promote a review enhancement mentality at the sales staff level which is contrary to the best interests of the beneficiaries and the Medicare program." Vitas subsequently announced that it had stopped paying commissions based on length of stay.
No adverse report was filed by the OIG's office concerning Vitas, nor did that agency seek reimbursement from the company, according to an OIG spokeswoman.
About the same time the OIG issued its "Operation Restore Trust" report, Paula Hackspacher (whose last name was then Shakelton) joined Vitas as a sales representative. Her job was to educate the public about hospice care and to generate referrals, but she quit last fall when she could no longer stomach the company's growing bottom-line mentality. Originally from New York, Hackspacher had worked as a nurse in intensive-care units for many years. "Then HMOs came in," she says. "I didn't want to be told how to practice medicine based on finances. The natural progression for an ICU nurse is hospice, I think."
For a short time, she became a marketer at an acute long-term-care facility in Broward County but came to believe that many of the patients she saw there were more appropriate for hospice care. Thus, she joined the Vitas team. "Vitas had a very good reputation," she says. "I knew a lot of people who worked there. But the Vitas that hired me five years ago was not the one I left last fall."
Hackspacher was assigned the "Holy Land" territory, the company's nickname for the northeast part of Broward County that's home to Holy Cross Hospital. "For 20 years, Vitas wanted a contract with Holy Cross, but it wouldn't allow them in there," she says. Hackspacher says her reputation as an ICU nurse helped land the contract for Vitas, under which patients admitted to the hospital's hospice ward would be attended to by Vitas nurses, social workers, and chaplains. Hackspacher's job as a representative was to increase the number of physicians who referred patients specifically to Vitas. Her commissions were based upon the number of those referrals. Because of that commission structure, Hackspacher says, representatives are not supposed to be directly involved in assessing whether a patient is eligible for hospice, which requires a determination that the patient has less than six months to live if the disease progresses in a typical fashion.
Noncommissioned staff members make the assessments to avoid conflicts of interest.
"I dealt with physicians," Hackspacher says. "Then I'd have a patient-care liaison go out and assess the patient. Supposedly a rep was never allowed to do an assessment on their own patients, but it has happened. We are bonused on our admissions, so it's not proper for us to do the actual evaluation. But it has been done."
Many medical personnel view Vitas with suspicion because of its for-profit status and its aggressive marketing. In the face of withering opposition in the "Holy Land," Hackspacher was chosen Vitas Rookie of the Year in February 1999. "Everything came her way, from being called a bounty hunter in the halls of a hospital, to actually being 'kicked out' of hospitals and physicians' offices," David Sullivan, the director of admissions, wrote glowingly in nominating her. He concluded that she marketed each day "knowing that she will return home that evening with a lot of bruises, simply because her name plate says VITAS."
The push for more patients steadily increased during Hackspacher's tenure with Vitas. "They want to look at our average daily census, what the revenue is," she explains. "Everything is revenue-pushed. Everything is a numbers push." For example, just before Labor Day weekend in 2002, the company e-mailed information to employees about a Labor Day Recognition Program. "Here is another opportunity for you all to earn some extra $$$," the memo began. "For healthcare professionals, the holiday season is often viewed as an inopportune time to speak to a patient about terminal diagnosis... When healthcare professionals delay breaking bad news, terminally ill patients and their families can not benefit from VITAS services during the holidays."
The real pressure had begun, she recalls, after the company announced new financial backing in May 2001. Vitas received $65 million in working capital from four banks, money to be used to retire old debt and "support continued growth," according to the announcement. The restructuring allowed Vitas to buy out a venture capital group's percentage of ownership in the company, and as a result, the group's two representatives were removed from the board of directors. That increased Vitas' control over its own direction, the memo stated.
"The numbers they began assigning us were ridiculous," Hackspacher says. "We'd get beeper pages, saying, 'Make five more calls today.' The numbers were like... 'Where do you want me to get them from? If they're not dying, they're not dying! I can't make them die, you know?'
"I felt the quality of care was going down," Hackspacher says. "How do I sell something that I don't believe in any more?" She and her husband now operate a small neighborhood bar.
Mark Cohen, a spokesman for Vitas, defends the company's assertive marketing. "A lot of people die in hospital ICUs who don't want to. There's no societal good to that," Cohen says. As such, Vitas management made a decision long ago to identify individuals in health care who would be advocates for hospice, he says. "Having hospice reps is not unique to Vitas," he adds. "It's not unique to for-profits. It's common to successful hospice programs, regardless of their tax status."
Backoff, a former Vitas rep, contends that there has been no pressure from upper management to increase numbers of patients since she became general manager in June 2002.
Barbara Rourke's deterioration began about two years ago, when she developed a nervous condition. Local doctors claimed she had Alzheimer's disease, but she exhibited no problems with her memory. Her daughter, Candi Rollins, and other family members doubted the diagnosis, so they took her to an Alzheimer's specialist in Massachusetts who quickly ruled out that disease. Upon her return to Pompano Beach, her husband -- Rollins' stepfather -- suffered a severe heart attack but was kept alive on a life-support machine. In the meantime, a psychiatric doctor prescribed anti-anxiety drugs for Rourke, who continued to visit her husband in the hospital and walk for exercise. During one of those walks in February 2002, she slipped and fell, and Rollins took her to the hospital to "rule out a hip fracture," she says. "I explained to them that she never had any medical problems but was taking these psych drugs and was being treated by a doctor and that he had said she shouldn't stop taking them."
The hospital, however, did not give her the drugs, Rollins says, and five days later, she "looked like a prisoner of war and couldn't even nod her head." Eventually she was transferred to a rehabilitation facility, but Rollins and her husband, Joe Moran, contend that little therapy ever took place. Rourke also didn't get assistance eating unless family members were there, Rollins says, so her mother lost weight. She says Rourke would "eat like a horse" when she or Moran fed her.
"They starve a patient, and then they insert a feeding tube," Moran complains. "That's another justification for Medicare to pay more. She begged me to take her home at night."
In September, the rehab's doctor recommended a hospice consultation for Rourke because she was "failing to thrive." During that consultation, the Vitas nurse declared that Rourke would need to lose weight.
"We were confused," Rollins says. "But we knew we wanted to get her out of that place." The nurse said that Rourke qualified for home hospice care and that someone else at Vitas would contact them in a short while. They heard nothing for two days. Vitas advised her to wait until she had a hospital bed at home before bringing her mom there.
Moreover, Vitas managers said they thought Rourke should receive hospice care in one of its inpatient facilities. "They called me into their office to try and discourage me from taking her home," Rollins says. "They wanted me to put her in one of their places, the reason being was that I could go to jail in a heartbeat, that [the Department of Children and Families] doesn't mess around. If my mother got one bedsore -- and she already had bedsores from that facility -- I would be charged with neglect. I was scared. They said they were going to be checking, and if anything looked suspicious or neglectful, that I'd be going to jail."
The medical equipment finally arrived on a Friday afternoon, a week after they'd requested it. When they went to the rehab facility to meet with a Vitas employee later that day, the woman told them, "You're not taking your mother anywhere. I have plans, and it's too late. I waited all day for you."
Rollins explained that they had been awaiting delivery of the equipment, but the woman left. Undaunted, the couple drove their mother home that night. They then called Vitas to request a nurse be sent over, as was required. The nurse arrived at 11:30 p.m. "She was upset because it was a late Friday night," Rollins says. "She went into the kitchen, never going in to meet my mother, to check her vital signs, nothing." The visit ended, Rollins claims, with the nurse asking in a loud voice, "What do you want from Vitas?" She left, saying another nurse would be "right behind me."
About 3 a.m., they heard a knock on the door that turned out to be a delivery man from the pharmacy with which Vitas does business. He spoke no English and handed them a bag full of drugs. "I called Vitas and asked what I should do with this bag of drugs," Rollins says. "The guy said, 'Give it to the nurse that's there. '" There was, of course, no nurse.
Nurses started showing up the next day, but the Vitas doctor, Jay Peitzer, who Vitas promised would be there within 48 hours, didn't show up for three weeks, Rollins says. Some of the drugs delivered the previous night were prescribed by Peitzer, Rollins says, even though he'd never examined Rourke. She called steadily, requesting a visit from the doctor.
When Peitzer finally showed up, the meeting was tetchy. "He said, 'You're labeled "The Angry Daughter. "' He walks into my mother's room, and she's in bed, awake, and he never acknowledged that she was there, that she was a person." He did say that she'd had a "rocky time" thus far but that the family should put that all behind them. "We're going to have a good relationship," he said, according to Rollins. He continued: "I'm going to be the one signing your mother's death certificate. Which brings me to my next question: What do you want me to put on your mother's death certificate? Because I don't even know what's wrong with her." Rollins says her mother heard all of this and became agitated.
During another visit by Peitzer, Rollins told him of the problems her mother was having with valproic acid, which she was taking to counteract seizures caused as a side effect from other medications. Rollins asked that her mother's blood be monitored so a therapeutic level of the drug could be attained. Rollins says the doctor's response was: "She's dying anyway. What difference does it make?" Rollins told him it was a matter of quality of life, because the valproic acid was causing drooling, hair loss, and an inability to hold her head up. She says Peitzer's response was: 'You're lucky she lived past 11 days. I gave her 11 days when she came home.' Rollins was outraged. "You gave her 11 days?" she responded. "You didn't even meet her until three weeks after she came home." Rollins weaned her mother off the valproic acid.
Rollins kept running up against institutional miserliness, she says. One nurse helped heal Rourke's bedsores by using specialized bandages. She advised Rollins to continue using them so that they wouldn't recur. When Rollins ran out of the bandages, she called the team leader in charge of her mother and requested more. "She said, 'That's not cost-effective. Call me back when the bedsore opens. We're not going to treat it before. '"
Rollins has also insisted that her mother's catheter be replaced once a month because the plastic breaks down. Rollins claims the team leader told her, "We're not going to replace the catheter because that's not cost-effective when someone's dying. What if she dies the next day? Then we've wasted a whole catheter."
Cohen and Backoff contend that Rollins and her husband routinely misinterpreted Vitas personnel. On the issue of feeding Rourke, Cohen says: "It's endemic across so many ethnic, racial, and religious groups that to feed is to nurture, to feed is to demonstrate love, to feed is to demonstrate care. And yet when somebody is terminally ill, one of the less-advantageous things you can do for somebody is to force the intake of food and water. If a family member or caregiver didn't quite hear what the nurses on the admission team were trying to explain, it wouldn't be the first case. It's regrettable, but it wouldn't be the first case."
As for Peitzer's remarks, Backoff says the doctor denies making such comments.
Cohen says the couple also misconstrued the company's approach to medical supplies. "You cannot judge hospice clinical protocols by the same standards that you find in aggressive, curative care in a hospital," he warns. In general, hospice avoids invasive procedures on patients whenever possible.
Vitas was also supposed to provide "respite" care for the family, with an aide coming in for a few hours to give them a break. Moran has dubbed the benefit as "stresspite care." At times, Rollins says, she had to cancel appointments because the respite aide canceled at the last minute. Once, when Rollins was running late, she called the aide to tell her she was a few miles from the condo but was held up. "When I got home, I went to my mother's room, and the girl was gone," Rollins says. "She'd left my mother alone. She was nude, and she'd fallen through the side rail, her head on the floor, and the catheter was so tight on the other side of the bed that it was leaking. I freaked. My mom can't yell for help. Can you imagine how scared she was?"
Backoff says the employee was fired over the incident.
Particularly irksome to Rollins and Moran are cursory visits by Vitas staff that are then documented in the "gray box," a bedside file used to verify the time and type of visit. Rollins recalls waiting once all day for a nurse to arrive. Finally, in the late afternoon, she appeared, asked for the gray book, signed it, then excused herself by saying she was running late. She didn't examine Rourke. "I yanked the paper out of the thing and threw it away," Rollins growls. "I didn't want her to get credit for coming."
In April, the Vitas doctor had told Rollins that her mother qualified for recertification to receive an additional six months of hospice reimbursement from Medicare. On May 1, however, Rollins returned from an afternoon respite-care break to find a note from the nurse. "As per our conversation," it stated, "your mother is to be discontinued from Vitas as of May 9." The brief memo added: "Also we need to pick up our equipment."
Backoff says Rollins misunderstood the recertification process. Rourke's condition had stabilized, Backoff says, and Rollins had been advised twice before the note that Vitas would be withdrawing hospice care.
Rollins is not assuaged by Backoff's explanations. "My experience with Vitas," she says, "has left me feeling empty inside."
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