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Choices at the end of life

It's a time that can be emotionally and financially draining. Those who've studied the matter say that informed choice can make a difference.

January 22, 2010|By Lisa Zamosky
(Dana Neely / Getty Images )

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.

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