The U.S. has a reputation for treating terminal illness too aggressively -- throwing all kinds of intensive, painful, but ultimately futile treatments at patients who would prefer to die at home in peace.
A new study suggests that reputation is wrong, at least in part.
The study, published Tuesday in the Journal of the American Medical Association, examines treatment that terminal cancer patients from seven developed countries, including the U.S., received during their last six months of life. The authors say that it is the first research project of its kind. And they admit to being surprised by the results.
In particular, they suspected that U.S. cancer patients were among the most likely to die in the hospital, which would suggest they are getting intensive treatment right up to the end. The data, however, showed the opposite result. Americans, along with the Dutch, were the least likely to die in hospital. Canadians were the most likely.
But another finding from the survey was consistent with the stereotype of intensity in American medicine.
More than 40 percent of U.S. cancer patients had spent time in an Intensive Care Unit during their final six months of life. No other country in the survey had a number that was even half as high. A nearly identical percentage (38.7) had gotten at least one chemotherapy regimen -- again, the highest finding in the survey.
Like all studies, this one has its limitations. It looks only at cancer care, for example, and the data sets from some countries represent only part of the population. The authors, however, attempted to adjust for these differences to ensure their findings were valid.
The authors, however, attempted to compare similarly representative groups -- comparing “apples to apples,” as the saying goes -- to ensure their findings were valid.
How to treat cancer patients facing the late stages of terminal disease is, of course, a complicated question -- one about which people are bound to disagree, depending on individual circumstances and personal preferences.
Discussions of end-of-life treatment have been particularly fraught in recent years, following (false) accusations that the Affordable Care Act would deny life-saving treatment to the frail and elderly. In fact, a lead author on the study, bioethicist and oncologist Ezekiel Emanuel, became the focus of controversy in 2009 because he was serving in the Obama Administration and critics suggested (again, falsely) he’d endorsed physician-assisted suicide in earlier writings.
But the cacophony over “death panels” has masked some strong feelings from the American public and, increasingly, the medical profession.
Surveys have shown most Americans would prefer to spend their final months out of the hospital, and without intensive treatment, if they have a terminal disease. Thought leaders like Atul Gawande, physician and author of the bestselling book Being Mortal, have argued that the medical system needs to put more emphasis on quality of life -- and do more to respect patient autonomy -- for people with terminal diseases.
In a JAMA editorial running in the same issue as the study, Gawande writes that when doctors focus too heavily on disease treatment, without attention to palliative care, “patients experience more pain, more anxiety, and more family exhaustion; they receive more nonbeneficial care and more hospitalization; and they do not live longer."
The relatively low rate of cancer patients dying in hospital suggests that the U.S. health care system is responding to such criticisms -- in part, Emanuel told The Huffington Post, by encouraging alternatives to hospital care at the very end of life.
“Over the last 30 years the US has learned how to transition patients to hospice and allow them to die at home,” said Emanuel, who is now a vice provost at the University of Pennsylvania. “That constitutes huge progress. What we need is to introduce hospice and palliative care earlier in the patient's decline.”
Still, Emanuel said, the U.S. health care system continues to provide incentives for intensive treatments by, among other things, paying for each service that health care providers render. That could help explain why terminal patients are spending so much time in the ICUs.
“What these data suggest is that the U.S. needs to do two things,” Emanuel said. “First is to reduce our use of high technology -- ICUs and chemotherapy -- when a patient's poor prognosis is clear. More importantly we need access to universal palliative care that patients get regardless when they develop metastatic disease and develop the first symptoms.”