Patients dying from cancer don’t receive enough information about end-of-life options at many U.S. hospitals to decide on their own when to end aggressive medical care, a Dartmouth College report suggests.
The university’s Dartmouth Atlas Project compared records of 235,821 patients with national surveys that show many people don’t want aggressive care at the end of their lives, preferring to die at home with their pain controlled. The analysis of the medical records showed no evidence that the preferences were reflected in the treatments given, including chemotherapy and life-sustaining treatments such as feeding tubes.
The research, released today, indicates that doctors and patients need to hold more conversations to ensure that care reflects what dying patients want, said David Goodman, the report’s lead author. A proposal for Medicare, the U.S. program for the elderly and disabled, to reimburse physicians for such consultations went nowhere after Republican Sarah Palin last year likened the idea to establishing “death panels.”
“Physicians tend to go overboard so as not to miss a chance to save a patient’s life,” said George Sledge, president of the American Society of Clinical Oncology, a professional group based in Alexandria, Virginia. Dartmouth used quality measures from association to assess hospital treatment.
The discussions don’t always occur, not least because of physicians’ reluctance to admit there is no treatment left that might prolong a patient’s life, said Goodman, a physician. Also, government and private insurer reimbursement policies “reward richly curative efforts and give pennies for palliative and hospice care,” he said.
“The biggest problem we have with end-of-life care for cancer patients is not overtreatment, it’s undertreatment when it comes to working for quality of life,” Goodman said in a telephone interview. “Patients want to live long, but they also want to live well.”
Goodman is co-principal investigator for Dartmouth Atlas in Lebanon, New Hampshire. That project, which was cited by President Barack Obama during the health-care debate, has issued reports for more than 20 years showing disparities in how medical resources are distributed and used.
“The hardest part of my job, bar none, is telling patients -- most of whom I have been working with for months, even years -- that I have nothing else to offer them,” Sledge, an oncologist who is co-director of the breast cancer program at Indiana University in Indianapolis, said in a telephone interview.
In early drafts of the U.S. health legislation, a provision would have allowed Medicare to reimburse doctors for time spent in end-of-life discussions with patients. The measure died after Palin attacked it in August 2009 and Senator Charles Grassley, an Iowa Republican, described the conversations as government efforts to “pull the plug on granny.”
“That was the most unpleasant part of the entire health- care debate,” Sledge said. “The idea that this was some nefarious plot to pull the plug on granny was absurd, when quite the contrary was the case. These conversations give patients more autonomy and choice, not less.”
Calls to Senator Grassley’s office and Sarah Palin’s SarahPac.com weren’t immediately returned.
The Dartmouth report was based on records of cancer patients on Medicare who died from 2003 to 2007. Among the national surveys Dartmouth used to assess patient preferences were two Institute of Medicine studies published in 1997 and 2001 that documented the overtreatment with curative measures that patients don’t want and insufficient attention to suppression of pain that patient do want.
“The more information a patient is given the more they can make a choice that’s right for their situation,” said Linda DeBenedictis, president of the New England Patients’ Rights Group Inc., an advocacy organization based in Norwood, Massachusetts. “I’m hoping that patients will always have that choice.”
Relying on hospice care instead of hospitals may save the government money, according to a study at Duke University in Durham, North Carolina. The research showed Medicare saving about $2,300 a patient on average when people die under hospice care rather than in the hospital. The study was published in October 2007 in the journal Social Science & Medicine.
Quality of Life
While hospitals try to cure patients, hospices focus on improving a patient’s quality of life by reducing pain and enhancing function. More than 1.5 million people were treated in U.S. hospices last year, said J. Donald Schumacher, president and chief executive officer of the National Hospice & Palliative Care Organization, a nonprofit group based in Alexandria, Virginia.
While Americans often view hospices as places to die, patients live longer with hospice care, Schumacher said. A study in the New England Journal of Medicine in August showed that patients diagnosed with incurable lung cancer lived longer when given palliative care earlier in their treatment, compared with patients getting standard care.
The Dartmouth Atlas study found that 29 percent of advanced-cancer patients ended up dying in one of the 137 hospitals analyzed by the report. The rates across the hospitals, including many academic institutions, showed wide regional variation.
The disparities reflect the haphazard, “almost unconscious” manner in which health-care systems evolve, Goodman said.
‘Accidents of Capacity’
“If Hospital X got a $50 million gift to build the world’s best palliative-care center, then patients who go there are going to get a different type of care than if they go to a place that just got $50 million to build the world’s best intensive- care unit,” Goodman said. “So there are lots of accidents of capacity.”
While the rate was 57 percent at Westchester Medical Center in Valhalla, New York, and 52 percent at Cedars-Sinai Medical Center in Los Angeles, the figure was 19 percent at both Evanston Northwestern Healthcare in Evanston, Illinois, and St. Joseph’s Hospital & Medical Center in Phoenix, according to the report. Evanston Northwestern has since changed its name to NorthShore University HealthSystem.
About 24 percent were admitted to intensive care at least once during the last month of life. The number ranged from 49 percent at Cooper Health System in Camden, New Jersey, and 46 percent at St. John Hospital & Medical Center in Detroit to 12 percent at Montefiore Medical Center in New York and 8.9 percent at Memorial Sloan-Kettering Cancer Center in New York.
Johns Hopkins Hospital in Baltimore and Sloan-Kettering strike a balance between aggressive treatment and palliative care, Goodman said. In the study, 24 percent of cancer deaths of Johns Hopkins patients occurred in the hospital. Hopkins had 19 percent admitted to the intensive-care unit during the last month of their lives; and 59 percent enrolled in hospice care, according to the study.
At Sloan-Kettering, 34 percent died in the hospital. In the last month, 42 percent were admitted to a hospice.
“People aren’t going to places like Johns Hopkins or Sloan-Kettering to die,” Goodman said. “These institutions are just managing to have these conversations with patients early enough in the process to give them the opportunity to die at home or in a hospice.”
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