Choices at the end of life

Every year, billions of dollars are spent in the United States to treat terminally ill patients during their final year of life. Tests, procedures and hospitalizations do little to prolong or improve the quality of that life, research suggests, and in fact may make the final days of terminal illness more emotionally upsetting for patients and their families.

The Centers for Medicare and Medicaid Services estimate that 5% of the beneficiaries who die each year take up 30% of the $446-billion annual Medicare budget. About 80% of that money is spent during the final month, on mechanical ventilators, resuscitation and other aggressive life-sustaining care. Often, the aggressive steps taken to save someone’s life are futile. A 2009 study published in the New England Journal of Medicine found that just 18% of adults older than 65 who received cardiopulmonary resuscitation in the hospital survived the procedure long enough to be discharged. In addition, researchers found the procedure in some cases prolonged patients’ suffering.

“People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn’t work that way,” says Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School. She was one of the authors on an end-of-life care study published last year in the Archives of Internal Medicine. “In fact, we found the opposite to be true. We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage.”

That study showed that cancer patients who planned in advance with their doctors about end-of-life treatment had much lower healthcare costs in their final week of life than those who didn’t. What’s more, the higher the cost of medical care, they found, the worse the patient’s quality of life was in the final week of life.

“People may not realize what their healthcare dollar buys them at the end of life,” Prigerson says. “We found that as the costs of care increase dramatically as death approaches, so too does the patient’s emotional and physical suffering.” The emotional disadvantages of receiving aggressive treatment at the very end stages of illness extend to the patient’s family. People who die in hospice, for example, are less likely to get aggressive care, and their quality of life is better, Prigerson said. There is no difference in the patient’s survival, and the bereaved family members fare better emotionally six months later, she said.

Overall, end-of-life discussions and the use of advance directives, which allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf, seem to lead to happier patients and lower medical costs, studies have shown. In fact, the Archives study by Dana-Farber researchers found that patients who had engaged in end-of-life discussions incurred more than $1,000 less in medical costs in their final week of life than those who did not.

Informed patients

Patients’ understanding of their illness and how it’s likely to progress plays a large role in the choices they make about treatment.

“Generally speaking, when patients are given their treatment options and the risks and benefits of each, they tend to choose, the research has shown, less intensive and less costly approaches to care,” says Rosemary Gibson, who led national initiatives to improve healthcare quality and safety at the Robert Wood Johnson Foundation for 16 years. She’s the author of the forthcoming book “The Treatment Trap.”

Many people don’t realize, says Prigerson, that a person kept alive on a breathing machine can’t talk to doctors or loved ones. Once people understand the details of some of the procedures used to keep someone alive at the end, she says, many choose another path.

There is evidence that palliative care is generally less expensive. That type of care emphasizes working collaboratively with terminally ill patients to ensure their physical and emotional comfort -- not to cure them.

A 2008 study also published in the Archives of Internal Medicine examined the cost effects of palliative care programs at eight hospitals throughout the country and found savings of about $1,700 per patient for those discharged from the hospital alive, and nearly $5,000 per patient who died during hospitalization. Reduced pharmacy, laboratory and ICU costs accounted for much of the savings.

“If you sit down with patients and families in the setting of serious illness, and talk to them about their goals of care, talk realistically about what modern medicine can achieve and what it can’t, and then match treatments to those goals, you save money,” says Dr. Sean Morrison, the study’s lead researcher and director of the National Palliative Care Research Center at the Mount Sinai School of Medicine in New York.

Most experts on end-of-life care insist that focusing so intently on end-of-life costs won’t fix what ails our healthcare system. “We don’t want to save on the backs of the dying,” Morrison says. “The larger issue is cost associated with people living with serious illness.”

Reforming care

Palliative care programs have proliferated throughout U.S. hospitals over the last decade. As of 2005, 70% of large hospitals reported having such a program, up 96% from 2000. Still, few patients are gaining access.

There are a number of reasons for this, Morrison says. Most hospital-based palliative care programs are quite small and depend on primary physicians to make the referral. For that to happen, many more doctors need training on how to treat people with serious illness and discuss end-of-life care. There are several national initiatives underway to meet that training need, he says.

The healthcare reform bills now being debated in Congress include a number of demonstration projects aimed at reining in costs and improving the quality of healthcare received by terminally ill Medicare beneficiaries. If successful, such programs might later become a permanent part of the Medicare benefit.

One project would allow hospice-eligible patients to continue to receive all Medicare covered services for which they were eligible prior to entering hospice. Under current guidelines, once a recipient enters hospice care, Medicare no longer pays for services to treat the terminal illness that put them there.

Other measures contained in both the House and Senate bills, if passed, ultimately may improve efficiency of care, as well as foster better communication among physicians, hospitals, long-term service providers and patients, says Peter Notarstefano, director of home and community-based services for the American Assn. of Homes and Services for the Aging.

By placing a greater emphasis on coordination of care, patients at the end of their lives are more likely to die in comfort and with dignity, he says.

“Congress is saying we have to break down the silos and the mind-set of ‘this provider does this and that provider does that,’ ” Notarstefano says. “It’s losing the fee-for-service mentality and recognizing that we need to learn how to best treat people at the end of their life.”