Seven months ago, in Carbondale, Colorado, staff at the skilled nursing facility where my mother had resided for over a year recommended that she be placed on hospice. My mother has severe advanced dementia and can no longer walk, speak, feed herself or recognize her family members.
As much as I know about hospice care for cancer patients here in San Diego, I knew nothing about hospice care in Carbondale for severely demented patients. Although we had declared my mother DNR (“Do Not Resuscitate”) when she entered the nursing facility in January of 2011, my concern was that this meant that once she was transferred to the care of hospice workers, albeit in the same bed in the same facility, she would be left alone in soiled diapers to die. She could not ask for anything, did not need any medications for pain or otherwise, and did not respond to questions. I envisioned that hospice had more pressing problems to deal with—for example, cancer patients in severe pain or with debilitating shortness of breath or inconsolable family members. My father was convinced, but I was not. I could not have been more wrong.
On November 12, the news broke in the San Diego Union Tribune that the San Diego Hospice, a not for profit highly respected hospice in our area, was being audited by Medicare. The hospice had stopped accepting patients November 10, and there was a threatened layoff of 200 of the 870 employees. Two programs—one for HIV/AIDS and one for the parents of newborns with life threatening illnesses who were not expected to survive, were halted immediately. And what crime did the San Diego Hospice commit? The audit focused on whether the hospice had been “too liberal” in its admissions. You see, in order to qualify for Medicare hospice benefits, you have to be expected to die within six months. If you are terminal by this definition, Medicare pays $172 per day for your care.
The thing of it is that all of the patients admitted by the San Diego Hospice did not die on schedule. The hospice spokeswoman was quoted as saying, “We put the concept of patients and what we were able to do for them above what the guidelines are.” A day later, both the physician CEO and the CFO resigned. Ironically, the reason that the hospice is being penalized is perhaps that the care was just too good—that by taking away fear, and providing excellent pain management and emotional support—the patients lived longer than the expected six months. And there is no comparison “other side of the coin”—what would these patients have cost society if they had continued on active chemotherapy or radiation, or had expensive acute care hospitalizations for infection or pain management?
Medicare has been offering a hospice benefit since 1982. In 2000, 513,000 patients took advantage of the benefit. In 2010, 1,100,000 patients went on hospice. The cost to Medicare was 3 billion in 2000, and 13 billion in 2010. Do the governing bodies of Medicare truly think that this is because hospices all over America are plotting to defraud the government? Personally, I think not. While there is Medicare fraud in all segments of the medical and hospital businesses, I prefer to think that the increase is due to the aging of our population, the acceptance into hospice of more Alzheimer’s and other chronic disease patients, and the growing level of comfort among physicians to consider hospice when there is no chance of a reasonable recovery for their patients. Undeniably, there has been a sharp increase in the number of for profit hospices nationwide, from 34% in 2001 to 55% in 2011, causing alarms to go off and triggering Medicare audits across the country.
A week ago my father called me to say that the nursing facility in Carbondale had no other choice but to take my mother off of hospice. The volunteers who came in to read to her, despite her lack of response, the massage therapists, the bright smiles and the occasional little gifts of lotion and a flower—are all gone. My mother, because of the excellent care she has received at the nursing home and from the local hospice, had simply failed to die on time of a bedsore, a urinary tract infection, or aspiration pneumonia. My father is lucky—if he chooses to he can continue some of the services that hospice was providing by paying for them out of pocket. San Diego Hospice closed the doors of its 24 bed inpatient facility recently. I wonder if the patients who were being cared for by the wonderful doctors and nurses and staff there will be so lucky.
Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries.