TAMPA — Most seniors with terminal cancer say they want to die at home or in a hospice, surrounded by loved ones, not high- tech medical heroics.
Yet a new study finds many of them spend their final days in hospital intensive care units, or leave the hospital only a few days before they die.
What's more, researchers from the famed Dartmouth Atlas Group found, where you live may have a lot to do with what happens to you.
For example, 45 percent of senior advanced cancer patients in St. Petersburg spent time in an intensive care unit during their last month of life. But that happened to just about 10 percent of similar patients in Bismarck, N.D., and 15 percent in Colorado Springs, Colo.
On the other hand, about 19 percent of senior terminal cancer patients in Florida died in a hospital. In California, the figure was 31 percent.
These geographic variations come as no surprise to Dr. Robert Walker, director of Ethics, Humanities and Palliative Medicine at University of South Florida Health.
"This study highlights a common problem," he said. "People are still receiving very aggressive care at the end of life, when their preferences are to not go for length of life, but to choose quality of life. There's a mismatch between what patients seem to want and what they seem to get."
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The Dartmouth Atlas Project, which for 20 years has documented variations in how medical resources are used, looked at Medicare cancer treatment data from 2003 to 2007 and compared it to similar data from 2010. The last month of life is frequently studied because at that point, many experts say, it should be clear whether more treatment is likely to help patients.
They saw that hospice enrollment did increase from 54.6 percent to 61.3 percent in that period for patients in their last month of life. And the number of cancer patients dying in hospitals fell from almost 29 percent to 24.7 percent.
But here's the catch: Many patients were shifted into hospice programs or sent home only days before they died. So they still had a lot of invasive care in their final month of life, rather than the comfort care many surveys indicate such patients prefer.
"Care doesn't reflect what patients want and need, but rather the practice of the region" where that care is delivered, said Dr. David Goodman, Dartmouth Atlas Project co-principal investigator.
Over the study period, admissions to the intensive care unit in the last month of life increased by 22 percent. And there was no change in the use of treatments such as CPR and chemotherapy.
Meanwhile, the number of patients admitted to hospice during the last three days of life increased from 8.3 percent to 10.9 percent over the study period. That's much too late to realize the benefits hospice offers dying patients and their families, say end-of-life experts.
The study looked at regional differences, and it also looked at individual hospitals.
At Tampa's H. Lee Moffitt Cancer Center & Research Institute, 57 percent of senior terminal cancer patients were admitted to the hospital during the last month of life in 2010. But just 8.3 percent received aggressive care, down from 14.1 percent in 2003-2007.
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Dr. Lodovico Balducci, program leader of Senior Adult Oncology at Moffitt, said the change is by design.
"Many patients are getting futile care, having treatment that can result in serious side effects and complications and which is expensive but detrimental," he said. "That is just depriving them of time they should treasure.''
The Dartmouth researchers wrote that although end-of-life discussions are more common these days, some patients "might prefer more aggressive care, or do not fully understand — or accept — that their life expectancy is limited when expressing their preferences.''
That conclusion is consistent with Walker's experience. "Patients will often pursue treatment even when there is no hope for a cure, but they don't seem to know that or don't accept that," Walker said. "Everyone is different in how they face death and some don't want to hear that their prognosis is terminal."
Balducci said many patients don't known how to express their wishes and never bring the subject up with family members or their doctors.
"That conversation should start at the beginning of treatment when a patient has terminal cancer," Balducci said.
Paradoxically, patients who accept their prognosis and accept palliative care often live longer and more comfortably than those who keep seeking aggressive treatment, a 2010 New England Journal of Medicine study found.
"Some patients don't want to discuss'' end-of-life planning, Balducci said. "I've been deserted by patients for bringing it up. But I tell all of them to make a living will, choose a health care surrogate and decide whether you want CPR because that requires a separate document. It's a cruelty to resuscitate some people. That's what I convey to patients early in our discussions."
Contact Irene Maher at [email protected]