New Regulations Give Hospice Patients More Control of Their Treatment

By Mark Agee, Fort Worth Star-Telegram, Texas

Jul. 31–Many dying patients will have new rights at the end of their lives after the federal government updated hospice regulations for Medicare participants this summer for the first time in 25 years.

Some of the most significant changes for patients in hospice, who typically have less than six months to live, include the right to effective pain medications and the ability to choose one’s own physician, according to the Centers for Medicare and Medicaid Services.

The bulk of hospice patients are Medicare beneficiaries, so the “rules for participation” that go into effect in December amount to regulation for much of the industry, which focuses on pain management instead of prolonging life or curing disease.

“These are simple changes that will make a big difference to patients at the end of their lives,” said Terry Berthelot, an attorney for the Center for Medicare Advocacy, based in Connecticut.

“Historically, doctors have been encouraged to back away from patients when they enter hospice, but this keeps familiar people involved,” she said. “Plus, it’s nice to have someone there who is not concerned with the hospice’s bottom line.”

Why now?

The Centers for Medicare and Medicaid Services revised the rules for treating their patients after an explosion in the prevalence of hospice care.

About 1.3 million people were treated at hospices in the United States in 2006, more than double the 495,000 who did a decade earlier, according to the National Hospice and Palliative Care Organization.

Of those 1.3 million, 1 million were Medicare beneficiaries, according to federal data.

“People are living longer, and the end of life looks different than it used to,” said Larry Farrow, executive director of the Austin-based Texas and New Mexico Hospice Organization.

Farrow and other hospice-industry representatives said practitioners are generally in favor of the changes.

“The federal government wants to know what they’re paying for, and everyone understands that,” Farrow said. “Good organizations are already doing most of these things, so the effects on us will be minimal.”

Jon Radulovic, vice president of communication for the NHPCO, said some of the changes raised standards, but some loosened strings that bound caregivers.

This is important in an industry where an interdisciplinary team of doctors, nurses, social workers and spiritual advisors collaborate to help a patient. Each patient requires an individual care plan.

“We were very happy with the results,” Radulovic said. “The new rules really should allow the hospices to meet the individual needs of each patient.”

The changes

Besides allowing the patient to keep their own physician and guaranteeing effective pain-management, the new rules also establish quality-assessment standards and performance-improvement programs.

After choosing the Medicare hospice benefit, patients must receive a comprehensive evaluation within five days, and assessments must be updated every 15 days after that. Currently, there are no such rules.

Berthelot said it is not clear how the new rules will be enforced.

“It usually will fall to the states, and the individual doesn’t have any way to enforce these rights,” she said. The Centers for Medicare and Medicaid Services “will have to be very diligent about keeping up with what is going on.”

Another significant change sounds obscure but isn’t. It’s the removal of a provision that required an inpatient facility that is only providing “respite care” to have a registered nurse on duty 24 hours a day.

Many hospice patients are cared for at home — 47 percent die in a private residence, according to the NHPCO — with families taking on much of the duties. Respite care provides a break of up to five days so that family can take a trip or recuperate.

But the requirement for a RN made offering the care cost-prohibitive for many hospices.

Now Medicare will pay for the respite care, even if there’s no RN.

This helps hospice workers fulfill their mission, Farrow said.

“Our job is not to add stress at the end of life, but to make it easy,” Farrow said.

cms.hhs.gov; nhpco.org; txnmhospice.org

Hospice facts About 1.3 million people were treated at hospices in the United States in 2006, more than double the 495,000 who received treatment a decade earlier.

In the same time period, the number of hospice programs in the U.S. has grown from 3,000 to 4,500.

About half of hospice patients (47 percent) die in a private residence, while only 17 percent actually die in a hospice facility. Others dies in hospitals or nursing homes.

Source: The National Hospice and Palliative Care Organization

End of life For information about hospice or help finding a suitable program, call the Texas and New Mexico Hospice Organization’s hotline at 1-800-580-9270.

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