Wai Ching Cheung displays a photo of her late mother, Ying Tai Choi, at a small shrine dedicated to her on March 24, 2014 in Tampa, Florida. Cheung feels that her mother's end of life care at a hospice was not handled the way it should have been. (Photo by Brian Blancoi/For the Washington Post)

When a hospice patient has chosen to die at home, as they typically do, the days immediately before death are typically the most difficult, and the time when families most need a visiting nurse.

But many U.S. hospices regularly fail to send a nurse out to patients in the two days preceding death, according to a Washington Post analysis of millions of Medicare records.

About one in five U.S. hospices do not send a nurse out to patients during that critical window for at least 20 percent of patients, according to the data.

Families that have had to handle a loved one's dying days without nursing help during that trying time have referred to their hospice experience as “do-it-yourself death.”

Some patients die without warning, of course, and naturally almost every hospice has some patients who die without having had a recent visit. But at a typical hospice, only about 8 percent of patients die that way.

When a hospice more regularly fails to send a nurse out during that window, experts said, the hospice probably isn’t being responsive to patient needs. Indeed, the statistic - the percentage of patients at a hospice who die without a recent nursing visit - is considered by some a good indicator of hospice quality.

Because of its significance, the Washington Post this month is adding the figure to its Consumer Guide to hospice.

 

For patients and families, being unable to see a nurse at critical moments can be excruciating.

Take, for example, Tana Barth, of the New Orleans area, whose 84-year-old mother was in hospice last year.

As her mother’s breathing became troubled one Sunday in July 2013, the family called the hospice agency, Lakeside Hospice, for help. They weren’t sure what to do, or how to help her mother.

Though the Barths could not have known, more than one in three routine home patients cared for by Lakeside Hospice weren’t seeing a nurse in the last two days of life, according to the Post analysis of 2013 Medicare data.

On the day her mother died, “I called and said ‘She’s breathing terribly,’ Barth said, “and I held up the phone so the woman at hospice could hear her. She said, ‘That’s the death rattle.’”

There were “a whole lot of calls” to the hospice, Barth said. She got one excuse after another, she said, about why the nurse couldn’t come out.

They instructed her to offer her mother doses of morphine.

Vicki Burns, co-owner of the hospice, said her records only show three phone calls made that evening, and that during the second one, Barth reported that her mother was comfortable.

After her mother died late that night, a hospice nurse arrived.

Barth sued the hospice and settled for an amount that has not been disclosed publicly, her attorney, Charles Marshall Thomas said.

Burns said the hospice has made improvements.

“As you can imagine, we took this complaint very, very seriously,” Burns said. “We made staff changes. We enhanced our training to ensure that all of our protocols are followed. We’ve put in a plan to make sure that we have a good reputation.”

“It was a horrible, emotional hell,” Barth said. “We wanted someone to come out.”