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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."