Despite widespread perception, the United States does not provide the worst end-of-life care in the world. In the first international comparison of end-of-life care practices, researchers from the Perelman School of Medicine at the University of Pennsylvania and colleagues from seven countries found that the United States actually has the lowest proportion of deaths in the hospital and the lowest number of days in the hospital in the last six months of life among the those countries, according to a new study published in JAMA.
However, the United States performs poorly in other aspects of end-of-life care, especially related to high-technology interventions. Over 40 percent of patients who die with cancer are admitted to the intensive care unit (ICU) in the last six months of life, which is more than twice that of any other country in the study. Similarly, 39 percent of American patients dying with cancer received at least one chemotherapy treatment in the last six months of life more than any other country in the study.
Using data from 2010 to 2012, researchers compared the site of death, treatments, and care used, as well as hospital expenses during the last six months of life for 389,073 patients who died in seven countries: Belgium, Canada, England, Germany, the Netherlands, Norway and the U.S. In Belgium and Canada over 50 percent of patients died in the hospital, while in England, Norway, and Germany over 38 percent of patients died in the hospital. By comparison in the U.S. 22 percent, and in the Netherlands 29 percent of cancer patients died in the hospital, which is in accordance with most patients' wishes.
"There's a widespread perception that the U.S. spends a tremendous amount on end-of-life care, but until now there's never been a comparative study to put U.S. spending and resource utilization in context," said senior author Ezekiel J. Emanuel, MD, PhD, Vice Provost for Global Initiatives, the Diane vS. Levy and Robert M. Levy University Professor, and chair of the Department of Medical Ethics and Health Policy at Penn. "End-of-life care is intensive and expensive, and what we know now is that the US does not have the worst end-of-life care and that no country is optimal. All countries have deficits."
Spending on end-of-life care was high in the U.S. at about $18,500 for hospital care in the last six months of life. Canada and Norway were even higher at $21,840 and $19,783 per patient, respectively, while Belgium, England, and the Netherlands were lower at $15,699, $9,342, and $10,936, respectively.
Importantly, these results suggest reasons for optimism, suggests Emanuel: "Care for patients dying with cancer has improved. As the U.S. shows it is possible to change care. In the early 1980s over 70 percent of patients with cancer died in the hospital and spending many days in the hospital was common. We can improve care and now countries need to commit to improving that care."
"Every country has its own challenges to improve end-of-life care. There are still too many people with cancer dying in acute care hospitals when we know our patients prefer to die at home," said Justin E. Bekelman, MD, an associate professor of Radiation Oncology and Medical Ethics and Health Policy, and lead author of the new study. "The U.S. continues to have high rates of ICU admissions and other markers of care intensity near the end of life. We can do better. We need a concerted effort toward making end-of-life care more consistent with our patients' wishes."
Using the results of this paper as a baseline for end-of-life care in the U.S. compared to other countries, the authors say moving forward it will be important for studies to focus on the cost of care outside of the hospital and better understanding the drivers of health care utilization disparities.
"This study focuses only on patients with cancer and mainly on their hospital services," Emanuel said. "To really understand the costs and to develop new models for improved delivery of end-of-life care, we need a prospective study to evaluate three things: dying patients with other diseases, the full range of care both in and out of the hospital, and most importantly, the quality of that care."
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