End of Life Care Improving, Finds a Recent Study

Just last month the Journal of the American Medical Association published a study that shows end of life care steadily improving in the U.S. This is a very quick overview of that study’s findings. The study was retrospective and 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. Here are some of the main points brought out in that article:

• Fewer patients are being transferred to the hospital for dehydration and infections.

• More than 50% of patients, and in some locations as much as 70% of patients, die in hospice care, instead of 70% of patients dying in the hospital, as it was in the early 1980s.

• Deaths that occurred in an acute care hospital decreased from 32.6% to 19.8% between 2000 and 2015.

• Deaths in a home or community setting, including assisted living facilities, increased from 30.7% to 40.1% between 2000 and 2015.

• In 2000 22% of Medicare patients died while in hospice care; as of 2015 that percentage had risen to 50%.

The study also highlighted that since 2009 policies and programs to improve end of life care have promoted conversations about the goals of care. Many states are now mandating that end of life care conversations and counseling be offered to terminal patients. We see this trend taking hold and even working its way into the courses offered in medical schools.

Nonetheless, the authors of the study said this is a glass half-full story. They acknowledge that there is a great deal of work to still do. Editorialist Ezekiel J. Emanuel, MD, PhD from Pearlman School of Medicine, University of Pennsylvania had this to say: “For many of us who have been working in the 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.”

One way that Dr. Emanuel suggests we improve end of life care is by starting sooner. “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,” he says. This is where doulas can contribute to improving care, because we can work with a patient and family very productively many months to a year before death is likely. When a dying person and family can work on questions of meaning and legacy, the resulting sense of purpose can lessen some of the symptoms that drive dying people to the hospital and acute care units.

As doulas become more and more commonplace in the care of the dying, the above statistics will continue to improve. But no matter in which location a person is dying, doulas can make a huge difference. Let’s turn this glass half-full story into one in which the glass is overflowing with the support, guidance, and compassion that we as doulas can provide.

Warmly,
Henry