With health care reform ramping up, some hospice programs have come under government scrutiny for taking some patients too early and keeping them too long.
But experts here say the real problem, in New Hampshire and elsewhere, is that most terminally ill patients and their families are coming into hospice too late.
"Hospice was designed to give end-of-life care, but it's turning out to be brink-of-death care," said Dr. Ira Byock, a palliative care expert and author who is a professor of medicine at the Geisel School of Medicine at Dartmouth.
Janice McDermott is executive director of New Hampshire Hospice and Palliative Care Organization (NHHPCO). She said the average length of stay in New Hampshire hospice programs in 2012 was 56 days.
But nearly half - 47 percent - of patients were in hospice fewer than 30 days, and 28 percent received care for less than a week.
New Hampshire has 23 hospice programs licensed by the state; 70 percent are nonprofit and the rest are for-profit agencies, according to NHHPCO.
Byock, whose latest book about end-of-life care is "The Best Care Possible," sees irony in the scrutiny of hospices where patients have outlived the six-month period that federal law defines for such care.
"While fraud and abuse does exist, it's also true that the hospice program's good care may improve somebody's condition and be the cause of them living longer," he said. "And we have to be sophisticated enough to applaud that while also ferreting out fraud and abuse.
"What other part of the health care system is penalized and has to worry about lawsuits if their patients live too long?" he asked. "It's just horrendous."
After a San Diego hospice went bankrupt last year after a government audit found problems with its Medicare billing practices, Byock worries about a chilling effect on physicians who may postpone referring their patients to hospice care.
"Scrupulous hospice programs, ethical hospice programs, are now worried about offering their services to patients who may in fact stabilize and live longer," he said. "This is not something we want to have happen in America."
Nationally, 11.5 percent of hospice patients get care for more than six months, Byock said. But nearly 53 percent receive care for fewer than 30 days, and 35.5 percent for a week or less. "The largest problem is that people are dying before they get to hospice or they're dying within three days of being on hospice and certainly within less than a month," he said.
"And that's really a national disgrace."
Access to hospice care varies sharply among New Hampshire counties. In Coos County, 24 percent of Medicare patients who died in 2012 received hospice care, while 47.3 percent of patients in Merrimack County and 44 percent in Hillsborough County did so, according to Cordt T. Kassner of Hospice Analytics in Colorado, who analyzes Medicare and other data to promote better access to end-of-life care.
Kassner said New Hampshire's statewide rate of hospice use is 42.6 percent, just below the national rate of 44.4 percent.
By definition, hospice provides support and care for people in the last phases of an incurable illness "so that they may live as fully and as comfortably as possible," according to the National Hospice and Palliative Care Organization. That includes physical, social, spiritual and emotional care for patients and their families during the dying process and bereavement period.
Palliative care is medical care for those with serious illness, focusing on relieving symptoms, pain and stress, according to the Center to Advance Palliative Care.
NHHPCO's McDermott said she sees two divergent trends in hospice care today. For one, as patients live longer with chronic illnesses, "It gets harder to predict when the end is."
Often, once a patient receives medical, nutritional and emotional support from hospice caregivers, that person can stabilize. And some get well enough that they can go home.
"And conversely," she said, "the medical community waits too long to offer hospice, or the family doesn't think they're ready."
Tina Andrade is director of development at Home Health & Hospice Care in Merrimack, which cared for 740 patients in 2013, either in their own homes or at its 10-bed Community Hospice House.
Last year, three individuals were discharged from the hospice house and 29 were discharged from home hospice care, Andrade said. But that doesn't mean they were not appropriate patients for the program to begin with, she said. "It was because they were stabilized."
She said in her experience, most patients don't get into hospice soon enough. And that experience is both professional and personal.
When her mother was dying 13 years ago, Andrade said, no one ever suggested hospice care to the family.
So her mother spent her last week in a hospital on a ventilator, unable to speak. "It was a horrible experience for us; it was a worse experience for her.
"At the time, I knew nothing about hospice, and nobody came to that hospital room to say anything about hospice," she said.
"I am haunted by that miserable, horrible death. And when I see the things that I see now, it makes me feel even worse that we didn't know and no one spoke to us."
In 1981, when Congress passed Medicare regulations, it set a time limit of six months for hospice care, Byock noted. "But the median length of stay has been falling progressively since that time," he said. It's now under 19 days nationally.
Byock said the hospice movement began in response to what he calls a public health crisis. "And I am yearning to know who speaks for dying Americans and their families today because so many people are dying (after) getting hospice care for only a few days or not getting the hospice care at all. And that, from my perspective, is a continuing public health crisis...."
If he could fix the system, Byock said, he would "get rid of the arbitrary criteria that requires people to give up treatment for their cancer or their heart disease in order to get hospice care for their comfort and their and their family's quality of life."
But he said that's not something that can be fixed through regulation. "This will literally take an act of Congress," he said.
For more: nhhpco.org, and dyingwell.org