When hospice patients have chosen to die at home, as they typically do, the days immediately before death are usually the hardest, and the time when families most need a visiting nurse.
But many U.S. hospices regularly fail to send a nurse to patients in the two days preceding death, according to a Washington Post analysis of Medicare records.
About one in five U.S. hospices does not send a nurse to patients during that critical time for at least 20 percent of patients, according to the data.
Families who have had to handle a loved one's dying days without nursing help 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 responding 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 for quality.
For patients and families, being unable to see a nurse at critical moments can be excruciating.