Feeling the pain

Advocates say hospice programs are crucial and cost-effective. State leaders say they need to be cut.

Medi-Cal-funded hospice services provided care around the clock for Alicia Elliot in the last few months of the child’s life.

Medi-Cal-funded hospice services provided care around the clock for Alicia Elliot in the last few months of the child’s life.

Photo by Stacy Elliot

When Stacy Elliot’s daughter was a toddler, Elliot learned her little girl had a degenerative disease and would not live to the age of 10. The neurological disorder caused Elliot’s only child, Alicia, to lose control of her motor skills gradually.

Last May, the 5-year-old was hospitalized for a kidney infection. At that time, Elliot, a 28-year-old single mother who lives with her sister in Woodland, quit her food-service job at the University of California at Davis to care for Alicia full time. Several months later, the child died.

Losing Alicia was excruciating as it was, but it would have been unbearable without the help provided by the Yolo County Hospice Program, Elliot said. “I don’t know what I would have done without them. Without their support, I think I would have ended up in the hospital or had a nervous breakdown,” she said.

The hospice services provided to Alicia and her mother were funded by Medi-Cal and included round-the-clock care the last few months of the child’s life. From the get-go, hospice workers educated themselves about the child’s rare disease, known as Rett Syndrome, and taught Elliot how to provide for her daughter’s increasing needs. They provided hospital equipment and diapers and counseled Elliot to help her cope with her daughter’s worsening illness.

“Because of them, I was pretty strong,” Elliot said.

Elliot is one of many recipients of hospice care who said the service was invaluable.

Angelina Hernandez, an elderly woman who is dying from cancer and receiving hospice services, said having care provided in her home in Woodland has been a blessing because she is becoming so weak. Hernandez, who worked in the fields for years, added, “I say thank you for the help.”

In spite of the high marks the hospice program has received from Hernandez and Elliot, the state-funded program soon may be axed.

Governor Gray Davis has put the Medi-Cal-funded hospice program, which has served thousands of poor, terminally ill patients and their struggling families over the years, on the chopping block to help cover California’s unprecedented budget shortfall of between $25 billion and $35 billion.

In 2001, the Medi-Cal hospice programs served about 20,000 people at a cost of $20 million, with the federal government picking up half the tab, as it does every year.

Hospice services are provided to ill men, women and children not expected to live more than six months. The service allows people suffering from deadly diseases, such as cancer, AIDS and heart or lung disease, to spend their remaining days at home. Hospice nurses, physicians, social workers and volunteers do their utmost to reduce a dying patient’s pain and to enhance the quality of their last days. They also teach family members how to adjust care as a loved one gets closer to death. Hospice staff help the surviving family members come to terms with the imminent death of a parent, mate, child or sibling and provide grief counseling.

Still coping with the loss of her daughter, Stacy Elliot says hospice services were invaluable.

Photo by Larry Dalton

About 10 percent of the hospice care in California is funded by Medi-Cal, which serves people younger than 65 who are very sick and poor, many of whom are minorities.

Hospice supporters were appalled by the plan to cut state funding for the program because cuts will affect such a vulnerable population.

“It boggles the mind that you would attempt to include this in the effort to balance the state budget,” said Ben Rich, associate professor of bioethics at the UC Davis Medical Center. “There are so many other places to get the same amount of money that would do a whole lot less harm,” he added.

Margaret Clausen, executive director of the California Hospice and Palliative Care Association in Sacramento, acknowledged the gravity of the state budget crisis but said the proposed cuts were foolish because the program saved the state millions of dollars. “They are throwing out the baby with the bath water,” she warned.

If Medi-Cal hospice services had been de-funded two years ago, the state’s medical costs would have jumped. Replacement care would have pushed the overall tab from $20 million to $30 million because of increased hospital stays and higher drug costs, according to the California Hospice and Palliative Care Association.

About 98 percent of hospice care is provided in a patient’s home, which minimizes costly hospital visits and stays in nursing facilities. Hospice services cost around $115-$130 a day, whereas a day in the emergency room can run up to $3,000, noted Virginia Shubert, head of the Yolo County Hospices Program.

The service also coordinates care and avoids unnecessary procedures.

When asked why the Medi-Cal hospice program was included in the proposed cuts to the 2003-2004 state budget, Hilary McLean, the governor’s spokeswoman, said this was a year “of extraordinary circumstances.” She added, “There are many programs that are worthy included in the budget proposed for cuts simply because we can not afford them this year.”

A study comparing the cost of care for the terminally ill covered by Medi-Cal in the state found that every taxpayer dollar spent on hospice care saved the state $1.57. The 1995 study by Lewin-VHI, which is the most recent study on the topic, found the savings in California were slightly higher than cost savings at the national level under Medicare, which were estimated to save the government about $1.52 for every dollar it spent. (The National Hospice Care Association is working on updating the numbers.)

McLean said she was not aware of the analysis showing that state-funded hospice services reduced California’s health-care costs, but she said other programs insist that they, too, are money savers. “I have no statistics to refute [the numbers], but in the short term, we have to get through this crisis,” she added.

Hospice providers are fretting about how their dying patients will manage if the Medi-Cal cuts go through.

“There are people dying every day and every hour in this state,” said Claire Tehan, head of the Trinity Care Hospice program in Torrance. “They don’t have time to weather the state crisis,” she warned during a conference on California hospice care held February 19.

The battle over the upcoming state budget is not expected to come center stage before May, but the California Hospice Foundation is gearing up to fight to save the state-funded care. The foundation recently formed a Medi-Cal Hospice Benefit Task Force and has asked its members to contact their local media and urge their legislators to exempt the hospice program from the budget cuts. After being briefed on the legislative process, hospice workers from all over the state will convene in Sacramento and meet lawmakers on May 14.

Eliminating Medi-Cal-funded hospice programs is indefensible, Tehan said. “It would have a profound impact and implications that we can’t even quantify.”