‘What If I Don’t Die in 6 Months?’

Ruth Kindred read with alarm that the federal government’s hospice investigation had reached California, demanding that one hospice repay $2.1 million in Medicare benefits for patients who had lived longer than six months after diagnosis, the standard for “terminal.”

“It scared me to death,” says Kindred, a 65-year-old widow suffering from heart disease, emphysema, diabetes--and metastatic lung cancer. “I thought, ‘Good heavens! What if I don’t die in six months?’ ”

Hospice care has been Kindred’s lifeline since November, when doctors told her she had six months or less and they could do nothing more for her.

For Ralph Cerniglia, 76, of Northridge, hospice care for his terminally ill wife, Mary Anne, 74, has also been a godsend. Until late December, when she began at-home hospice care, he’d been trying to do it all for her.

In fact, while the government audit has caused alarm, care for Kindred and Cerniglia and other hospice patients receiving Medicare--currently close to 300,000--is not in jeopardy. Their hospice services will continue to be covered. The target of the investigation is use of hospice benefits for people who are not eligible.

Starting in 1993 in Puerto Rico, where widespread abuses of hospice benefits were uncovered, the audit has expanded to 12 hospices in five states, including one in San Diego. The Department of Health and Human Services is seeking $83 million back from those 12 for patients who, it contends, were never eligible for hospice care because they were not terminally ill.

Still, as word spread that hospices were being audited as part of Operation Restore Trust, an investigation into Medicare waste and fraud, some feared that the terminally ill would just be cut adrift.

That’s a misconception, says George Grob, deputy inspector general at HHS. “They won’t be dumped. If there’s a valid prognosis of death, they will be taken care of” by hospice. If not, he adds, they may be put back on a regular Medicare program.

To be eligible for Medicare hospice benefits, patients must be certified by their doctors as having no more than six months to live. But, physicians say, predicting death is an inexact science.

“You’re going to miss the mark sometimes,” says oncologist Dr. John Hunt, medical director of Hospice of Saddleback Valley, Laguna Hills, Kindred’s provider. Even with advanced cancer, “It’s really hard to predict who’ll be the one who’ll extend out a little longer.” He adds, “A few people might abuse the program. They need to be weeded out without taking away what is basically a wonderful program.”

Each day, hospice caregivers come to the home of Kindred’s daughter and son-in-law in Lake Forest, where the den has been converted into a cozy space for Kindred’s hospital bed and the personal treasures she brought in January when she moved in.

Hospice workers bathe her, do her laundry, fix her meals, check her vital signs and medicines and tidy her room. One is her counselor. “We talk about anything and everything,” Kindred says. “She makes me feel safe, comfortable, secure.”

For Kindred’s daughter, Janet Roesch, hospice has been a savior. Without hospice, she says, “I would have to quit my job to take care of my mom.”

In five months, their caregivers have become family. “They take care of us, too,” says Roesch, preparing them--and her son, Zachary, 17, for what to expect. “In case he’s alone with her,” she says. “To have his grandma pass in his home is not an easy thing.”

After hospice workers leave each day, Kindred has her routine--soap operas, jigsaw puzzles, crochet and her black cat, Sneaker. Dwelling on death is not part of that routine. “I’ve accepted it,” she says. “I know what’s going to happen and there’s nothing I can do about it.”

Without hospice care, Kindred says, “I don’t know what we’d do. I sure couldn’t afford to live out my days in a hospital. And I wouldn’t die in a nursing home. If I had to go to a nursing home, I’d take an extra dose of pills.”

She finds solace in knowing that “hospice will be here to help me through to the end. I have my family, and I have hospice. That’s all I need.”

*

Mary Anne Cerniglia had been counting the days until Easter. The whole clan--six children, heaps of grandchildren, were to come. Then, “All of a sudden, she kind of closed in,” says daughter Judy Lenz. “She really didn’t want anybody around.” Still, Lenz says, just by staying alive through Easter, “She made her goal.”

Cerniglia has stopped eating and now communicates only by nodding. “We’re kind of hanging in here, waiting for the end now.” says her husband. “She’s got a heart that wants to keep fighting and beating.” On Monday he told her she had suffered enough and it was OK now to leave him. On Tuesday, he says, “She told me she was ready.”

Several times in the last few months, he thought he’d lost her. He smiles as he recalls how one time the family, alerted that death might be near, tiptoed into her room on one occasion. “She woke up, looked around and said, ‘Oh, thank God. I thought I was at the wake.’ ”

“The amount of ups and downs she’s been through is very unusual for a hospice patient,” says Rosario Salas, Cerniglia’s hospice nurse and care manager.

Her ordeal began two years ago when, on the Cerniglias’ customary morning walk to McDonald’s for coffee, she complained of faintness. UCLA surgeons found metastasized colon cancer.

“Without hospice, I’d have a rough time,” Ralph concedes. His wife had decided after a second course of chemotherapy: No more experimental drugs. “I’m going home and I’m not coming back,” Mary Anne said.

Her doctor asked Ralph, her husband of 52 years, “Well, how are you going to take care of her?” and suggested hospice. A weekly visit has evolved into team care that includes a volunteer masseuse, a chaplain and a social worker who counsels the whole family.

“They do a wonderful job of keeping these people happy, even though they’re fading away,” Ralph says of the hospice team from the Hospital Home Health Agency of California. “They treat her as an individual, a suffering soul.”

Mary Anne has been adamant--no heroic life-saving measures. Her wishes are in keeping with the philosophy of hospice, which, Salas says, is “not to prolong and not to hurry up the process.”

Like Mary Anne, some patients defy death for a while, says Hospital Home Health Agency’s Jean Dennis, a social worker and president of the California State Hospice Assn. “The will to live and to be engaged in life, if that is strong, that can override the physiology.” Mary Anne, she adds, “has a lot to live for, with him there for her.”

But, says Dennis, “At least 50% of hospice patients across the country die within three weeks after being admitted. The average length of stay is about a month.”

Assessing the impact of the audit, she says, “It’s difficult enough for physicians to turn a corner with a patient and say, ‘Curing this illness is no longer possible.’ A lot of physicians aren’t ready to do that until the 11th hour.”

Hospice care costs Medicare an average of $96 per day per patient ($100 in California), a fraction of the cost of hospitalization. The program spends $2 billion a year on hospice care, the bulk of it for in-home services. A bargain, say providers--and in reality 90% of hospice patients die within six months. In each of the cases being challenged by HHS, the patient lived more than 210 days.

John Jay Mahoney, president of the National Hospice Organization, doesn’t question the responsibility of HHS to keep all health providers honest. But, he says, “We very strongly object to the process the inspector general has used” (random sampling of records of the deceased), and “We question the overwhelming majority of their findings.”

He points out that costs skyrocket and continuity of care deteriorates when the terminally ill can’t access hospice--they begin a cycle of hospitalization, home care and hospitalization until death.

His organization is lobbying for legislation to allow for an unlimited number of 30- to 60-day certification periods for hospice patients who live beyond six months.

“I don’t think there’s a sense of panic” among hospice providers, says Mahoney, but there is concern that some doctors may shy away from referring to hospice, feeling “they can’t comfortably guarantee that they are 100% accurate with their prognosis.”

*

Some providers, pointing out that hospice care often extends the lives of people with AIDS and other diseases, feel they are, in effect, being punished for doing a good job. Susan Mann of Wichita, Kan., national president of the Pittsburgh-based Hospice Nurses Assn., says, “It’s really kind of a Catch-22. On the one hand, we have a public trust to use those Medicare dollars wisely and only for the people they’re intended for. On the other, I think any hospice nurse will tell you that you only get caught in that trap of trying to answer a family’s question--’how much longer?’--once or twice.” Patients “doing well” can die the next day; those appearing to be near the end may live several weeks.

Legitimate hospices are concerned now about getting referrals, says Margaret Clausen, executive director of the 200-member California State Hospice Assn., and nonprofits wonder if it will affect fund-raising. “Ultimately, we’re all concerned about what the impact will be on terminally ill patients. I really don’t understand the government’s thinking.”

Grob reiterates that the issue is eligibility--that the audit revealed that a significant number of patients did not, when enrolling, have a condition that could be expected to kill them within six months. Some, for example, had Alzheimer’s disease or dementia.

He emphasizes, “This has nothing to do with a six-month benefit. The question is, which patients are eligible--not how long it takes them to actually die.

“The hospice program is not designed for every person who has a terminal disease. This is a program for people who have made up their minds they would rather face death peacefully, and they’d like some help.”

Jack Gordon, president of the Hospice Foundation of America, a public charity funded by supporters of hospice, suggests that a hospice that can predict death 90% of the time or more deserves a medal rather than a reprimand.

He predicts, “The net effect of this investigation will probably be to refer people to hospice care later, [which will] cost the government more money. The people won’t live any longer and they’ll be in a lot of pain and discomfort rather than relatively pain-free and lucid.”

Grob acknowledges there aren’t easy answers. Yes, it would be more expensive for Medicare to pay for hospitalization or nursing home care, but, he asks, “Would these people be in a nursing home or a hospital if they weren’t in hospice?

“In theory, hospice is probably less expensive, but in fact if we begin to see a lot of people on these programs, we might be spending money here that might not be spent at all.

The basic question, he says, is this:

“Are these people facing death and choosing to do so?”

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The Effects Are Anyone’s Guess

Views differ as to what the effects will be of the government’s attempts to find people who have been in hospice care for more than six months and are ineligible for the Medicare benefit.

* “The net effect of this investigation will probably be to refer people to hospice care later, [which will] cost the government more money.”--Jack Gordon, president of the Hospice Foundation of America

* “In theory, hospice is probably less expensive [than hospitalization or nursing home care], but in fact if we begin to see a lot of people on these programs, we might be spending money here that might not be spent at all.”--George Grob, deputy inspector general at the Department of Health and Human Services

* “It’s really kind of a Catch-22. On the one hand, we have a public trust to use those Medicare dollars wisely and only for the people they’re intended for. On the other, I think any hospice nurse will tell you that you only get caught in that trap of trying to answer a family’s question--’how much longer?’--once or twice.”--Susan Mann, national president of the Hospice Nurses Assn.

* “I don’t think there’s a sense of panic” among hospice providers, but there is concern that some doctors may shy away from referring to hospice, feeling “they can’t comfortably guarantee that they are 100% accurate with their prognosis.”--John Jay Mahoney, president of the National Hospice Organization