End-of-Life Care in the US Steadily Improving

Fran Lowry 

July 18, 2018

The quality of care at the end of life has improved in the United States since 2000, with fewer deaths occurring in acute care hospitals and more occurring at home or in hospice, according to a new study.

Fewer end-of-life patients are being transferred to hospitals for "burdensome care" for things like dehydration and infections, the study found, and use of the intensive care unit (ICU) in the last month of life, which had increased until 2009, has stabilized.

The study was published online on June 25 in JAMA, but an accompanying editorial appeared just yesterday, on July 17.

Editorialist Ezekiel J. Emanuel, MD, PhD, from Perelman School of Medicine, University of Pennsylvania, Philadelphia, says the findings are good news.  

"Society and the US medical system have come a long way in improving end-of-life care. It is far, far from ideal, but it is also much better than it was 35 years ago when research on how to improve end-of-life care was just beginning," he writes.

"I see the glass as half full," he told Medscape Medical News.

"We're definitely making progress. There's just no doubt about that," Emanuel commented. "Anyone who was around in the 1980s, when I began research on end-of-life care and when the research into the end-of-life care field began, recognizes that we've made a lot of progress since then," he said.

He recalled how "more than 70% of Americans died in the hospital in the early 80s, and virtually all Americans with cancer died in the hospital…. Almost no one got hospice care."

"Now, more than 50%, and in some places 70%, of cancer patients die in hospice at the end of life," Emanuel said.

"That's real progress," he commented.

"On the other hand, the glass is not full," he continued. "There are still too many hospitalizations at the end of life. We've got a lot of ICU care at the end of life. So, are we there yet? No. So, a glass half full is probably a good measure."

Emanuel said he is optimistic about the future of end-of-life care in the United States.

"I believe we are heading in the right direction. There is more discussion and more focus on end-of-life care and trying to improve it and actually doing things than before. There's more awareness and more positive feelings about the importance of end of life care, so we are going to get better at it," he said.

For example, oncologists have embraced hospice care for their patients, and such care will only improve, Emanuel said.

"I think cancer patients have benefited and seen big improvements in their end-of-life care. There are still problems, but oncologists now regularly use hospices. It's not something exotic or rare. But I think the notion of hospice and palliative care has really pervaded all of the medical profession," he said.

Improvement is still needed, Emanuel said.

"For many of us who have been working in this field for a long time, the progress we have seen has not been fast enough. It's taken 30 years. We need to make end-of-life care easier to use," he said.

One important way to improve end-of-life care would be to start it earlier, Emanuel said.

"We need to be willing to acknowledge 6 or 12 months beforehand that a patient is not doing well and that death is going to happen. For 30 years we have focused on the last month or last few months of life. We need to broaden that out to the last 6 to 12 months and begin interventions earlier."

Substantial Improvements in End-of-Life Care

Efforts to improve end-of-life care have been in place for many years, note the authors of the study, led by Joan M. Teno, MD, Oregon Health & Science University, Portland.

Since 2009, policies and programs to improve care at the end of life have promoted conversations about the goals of this care and have led to continued growth of hospice services and palliative care, but how well these efforts have succeeded is unknown, the authors write.

Hence, the team sought to determine patterns for site of death, place of care, healthcare transitions, and burdensome care that occurred between 2000 and 2015 among Medicare recipients.

Their retrospective cohort study included 1,361,870 decedents who were  randomly selected from the Medicare fee-for-service population who died in 2000, 2005, 2009, 2011, and 2015, as well as 871,845 Medicare Advantage recipients who died in 2011 and 2015.

The study found that Medicare recipients who died in 2015 were less likely to die in an acute care hospital and more likely to die in hospice than those who died in 2000.

Among these decedents, the proportion of deaths that occurred in an acute care hospital decreased from 32.6% (95% confidence interval [CI], 32.4% - 32.8%) in 2000 to 19.8% (95% CI, 19.6% - 20.0%) in 2015.

Deaths in a home or community setting, including assisted living facilities, increased from 30.7% (95% CI, 30.6% - 30.9%) in 2000 to 40.1% (95% CI, 39.9% - 30.3%) in 2015.

Deaths occurring in the ICU increased from 24.3% in 2000 and then stabilized between 2009 and 2015 at 29.0% (95% CI, 28.8% - 29.2%).

Healthcare transitions during the last 3 days of life increased from 10.3% (95% CI, 10.1% - 10.4%) in 2000 to a high of 14.2% (95% CI, 14.0% - 14.3%) in 2009, but then decreased to 10.8% (95% CI, 10.6% - 10.9%) in 2015.

The Medicare Advantage program began in 2011. Among Medicare Advantage decedents, patterns in the rates for site of death, place of care, and healthcare transitions were similar.

The use of hospice also increased during this period.

In 2000, 22% of Medicare recipients were in hospice at the time of their death, and by 2015, that percentage had risen to 50%, the authors found.

The study was funded by the Robert Wood Johnson Foundation and the National Institute on Aging. Teno and coauthors and Emanuel have disclosed no relevant financial relationships.

JAMA. 2018;320:264-271, 239-241. Abstract, Editorial

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