Nov. 16, 2010 -- One in three older adults with advanced cancer spends their last days in hospitals and intensive care units (ICUs), often with doctor's employing Herculean efforts to prolong their life.
And this may or may not be what they wanted, according to the Dartmouth Atlas Project’s first-ever report on cancer care at the end of life.
The researchers reviewed the records of 235,821 Medicare patients aged 65 and older with advanced cancer who died between 2003 and 2007. They found dramatic variations in the kind of care cancer patients received based on where they lived and which hospital they chose.
"We have a long way to go with advanced cancer," says David C. Goodman, MD, lead author and co-principal investigator for the Dartmouth Atlas Project and director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice in Lebanon, N.H. "The care varies markedly from region to region and hospital to hospital, and it has more to do with where patients receive care than what they want."
Gap in Hospice Care
Many advanced cancer patients receive aggressive treatments in the last weeks of their lives, and hospice care is often not discussed until it is too late to be of any real comfort or benefit.
Cancer patients were more likely to receive aggressive treatment in the last weeks of life in Manhattan; Los Angeles, Orange County, Calif., and Chicago. By contrast, rates were much lower in Minneapolis, Des Moines, Iowa, and Seattle.
Fewer than half of patients in 50 academic medical centers received hospice services. Hospice or palliative care services have been shown to help treat pain and allow patients to die at home.
"We need to make the right investments in palliative care and hospice care services, and doctors need to re-examine how they communicate with patients," Goodman says.
The time to discuss these issues is at diagnosis, he says. "The bill of rights has to start at the beginning of treatment. This is a discussion about care, not just end-of-life care."
While many newly diagnosed cancer patients don't want to think about end-of-life issues early on, "palliative care should be introduced early in treatment when curative care is the intent," he says. "This legitimizes a conversation about living long and living well," he says, adding that "the longer you wait, the harder it is to have this conversation."
ICU Admissions Vary by Region
The chances of dying in a hospital vary based on where you live. For example, close to 29% of patients with advanced cancer died in a hospital between 2003 and 2007, with the highest rate of hospital deaths seen in New York City. Rate of hospital deaths were also high in some of the areas surrounding New York City.
Admissions to ICUs varied by more than sevenfold across regions, with more than 40% of cancer patients admitted to the ICU during their last month of life in Huntsville, Ala., and 6% of cancer patients admitted to the ICU in Mason City, Iowa.
It doesn't have to be this way, says Karen Wolk Feinstein, president and CEO of the Pittsburgh Regional Health Initiative, a supporting organization of the nonprofit Jewish Healthcare Foundation.
"So many families given the option to opt out would do so," Feinstein says. "We get engaged in freeing people from ICUs and helping those who promised their relatives that this would not happen, and that there would be no breathing apparatus or feeding tubes."
Some hospitals do try to make patients as comfortable as possible toward the end of life, she says. "This is the exception."
Feinstein suggests engaging your primary care doctor in these discussions early on to help navigate the end-of-life experience.
"Having advanced directives and choosing a health care proxy can also help make sure your wishes are honored," explains J. Donald Schumacher, PsyD, president and CEO of the National Hospice and Palliative Care Organization (NHPCO), a nonprofit group in Alexandria, Va. Schumacher is not affiliated with the Dartmouth Atlas Project.
"Don't leave it up for someone else to decide for you. You need to have these conversations with your family," Schumacher says.