(MONEY Magazine) – Last fall, doctors told Valli Rice, a 48-year-old artist who enjoys hiking and kayaking, that conventional medicine could not offer any real lifesaving treatments if her malignant brain tumor recurred. Although surgery, radiation and treatment with a high-tech tool called a gamma knife obliterated most of the tumor last January, the glioblastoma is very likely to grow back, possibly within months.

If it does, rather than spend her remaining time pursuing aggressive therapies that could run tens of thousands of dollars beyond what her insurance would cover, Valli has decided to enter hospice, a program for terminally ill patients who reject curative treatment. She resents the impersonality of high-tech medicine, saying, "I never want to be the glioblastoma in room 102." And she is aware of its probable futility: "It won't prolong my life, only my death."

But her parents, Ted and Muriel, and two of her three sisters feel differently. Though they are terrified at the prospect of the huge medical expenses that she may run up, they want Valli to fight for her life. At 77, Ted knows he and his wife are heading into the years when their own health-care costs could become considerable, but he is willing, he says, to put his sizable retirement nest egg at stake "if that's what it takes to save Valli."

FAMILY SOLIDARITY

The Rice family has always stuck together. As a Navy officer in the 1960s and, later, a sales manager for General Electric, Ted was posted to the four corners of the world, from Iran to Morocco, where he and Muriel raised their four daughters. Often lonely in a strange land, the Rices turned to one another for support. Now the solidarity forged over decades is being tested by this new and unwelcome challenge.

Health insurance from her job as a bookkeeper for a small moving company in Prescott, Ariz. picked up most of the $120,000 tab for Valli's initial round of treatment. But her coverage ended soon after she became too disabled to work and had to leave her job. The company was too small to be bound by federal COBRA regulations requiring employers to let workers continue coverage for up to 18 months by paying the group rate out of their own pockets. Were Valli to try to get insurance on her own, it would likely cost someone with her health problems $15,000 or more annually. This is a sum she could not possibly afford. Instead, she has turned to Medicaid, the government health insurance program for the needy.

Unlike her comfortably middle-class family, Valli has accumulated no financial assets. She has always supported herself, but her jobs, ranging from construction site flag-woman to fudge shop co-owner, paid modestly. Today she is living on disability payments of $800 a month from her previous employer and Social Security, not nearly enough to cover her minimal living expenses and pay the rent for the house she lives in near her parents in Mystic, Conn. However, her dad owns the house, and family members chip in to help cover other costs.

Now that she has moved back to Mystic and Medicaid has started picking up her prescription drugs, her out-of-pocket expenses are fairly small, and her family has covered them. But the loss of her independence bothers her. "I never wanted to depend on anyone. Now I have to," Valli says. "But I won't let my family use up their savings on me."

HOSPICE VS. HOSPITAL

Chances are they won't if Valli sticks to her plan to enroll in hospice if her tumor recurs. Instead of battling death tethered to machines in a hospital intensive-care unit, hospice patients receive low-tech comfort care, usually in their own homes. While few people choose it for the cost savings, hospice can spare a family the crippling expenses that often accompany a catastrophic illness when insurance doesn't cover, or only partially covers, treatment.

The average cost for hospice care at home is $96 a day, compared with an average of $426 a day in a hospital during the last year of life. Although 90% of hospice patients choose to be cared for in their own homes, there are hospice facilities with full-time staffs that accept terminally ill patients. (Charges vary by location and other factors.) Most insurers, including the government's Medicare program for seniors, pay 100% of hospice costs, and Medicaid does so in 41 states, including Connecticut. Fees cover nursing, homemaking services, prescription drugs and such treatment as scopes, scans and surgery if needed to ease the patient's pain. Volunteers provide family members with some respite from the physical and emotional burdens of caregiving. (For more information on choosing a hospice, see the box at right.)

Right now, though, only Leigh Darrow, 51, Valli's older sister and a hospice nurse in western Massachusetts, is in favor of Valli's seeking hospice care. "It's not about choosing death," Leigh insists. "It's about choosing quality of life over quantity."

But Ted, who retired from the Navy as a commander in 1964 and then put in 10 years selling aircraft engines for GE, regularly surfs the Internet for news of breakthroughs in brain tumor treatment, even though experimental therapies are usually not covered by insurance. "We can cross that bridge when we come to it," he argues. "Some clinical trials are free if you're the kind of patient they're looking for." Muriel, also 77 ("Honey," to her children), wants Valli to go to New York City's renowned cancer research center, Memorial Sloan-Kettering, for a consultation. But it's far from certain that Medicaid, or any other insurer, would agree to cover the four- or five-figure fees for evaluation and possible diagnostic testing, much less the cost of nonconventional treatment.

"The newer the therapy, the tougher the sell to the insurer that the treatment should be covered," says Nancy Peck, a family friend whose job coordinating insurance coverage for a psychiatric hospital makes her an expert in the insurance payment review process. "It can take weeks just to get an answer." Meanwhile, Valli's family would have to advance thousands of dollars for treatment that might not be reimbursed later. "Time is everything when a patient is deteriorating, and most doctors and hospitals want to be guaranteed their money," says Peck. "It isn't right to put people in this position, but we do it all the time." (For tips on researching clinical trials and finding advocacy groups that will try to help convince insurers to cover promising experimental procedures, see the box on page 90.)

Even if insurance would cover Valli's medical costs, it wouldn't pay for many of the other expenses that come with seeking aggressive care, especially if the treatments require traveling to another part of the country. The Rice family spent thousands of dollars on plane tickets and motels tending to Valli in Arizona. Leigh racked up a $400 phone bill in only two weeks, comforting her sister and talking to Valli's doctors and insurer.

These considerations make hospice even more attractive to Valli. "I would never even consider putting my family in this financial bind," she says decisively. But she will still be banking heavily on her family's other resources. Because she wants to remain at home, her parents and sisters will have to be the providers of most of her routine care. Doctors and health aides will stop in as often as needed to administer painkillers and ease any other unpleasant symptoms of her illness such as dry mouth or nausea. Homemakers and trained volunteers will give the family some relief from the strain of caregiving. But the rest will be up to the Rices.

SEIZING THE MOMENT

For the time being, the subject of money is off the table in the Rice family, since Valli is opposed to aggressive care of any kind. She may change her mind later on, however, as time dwindles. Like many people with a life-threatening illness, she prefers reality in small doses. In December, she drove two hours with Leigh from Prescott to Phoenix to get a prognosis. Instead of meeting with her doctors herself, however, she asked Leigh to do so and then insisted she keep silent on the long ride home. "I got into my pajamas, lit a cigarette and said, okay, now give me your best two minutes of information," Valli recalls. The report said that she had responded well to treatment. And, of course, she still nurtures hope. "If something comes along that could actually cure me..." Leigh too dreams of a miracle: "I want the treatments that work in rats to start working in people."

For now, though, Valli intends to spend the time that remains to her on her art and on enjoying her family. A talented amateur portrait painter with a degree in fine arts from the Rochester N.Y. Institute of Technology, she's found creative inspiration in her illness. She collected hair shaved from the site of her surgery and the wire face mask used to position her head for radiation. "I'm thinking of combining them to present a patient's-eye view of treatment," she explains. Valli, who enjoys daily two-mile walks, insists that her illness has not deprived her of a long-envisioned future.

"I was never one to look ahead," she says with a smile. "The present is the most important to me. In that sense, my life is no different now. I love nature, so I appreciate the beauty of natural cycles. I know I won't die in pain or alone. I think that's comfort enough."