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 yesterday. I wonder if the patients who were being cared for by the wonderful doctors and nurses and staff there will be so lucky.
Makes me sick…
I did not know that San Diego Hospice closed their food yesterday! Is this temporary? What a shame! They helped my girlfriend & her family. Few years ago when she was diagnosed at age 60 with metastatic pancreatic cancer. She, however, went by the rules & was gone within six weeks. Hospice was there to continue to help her devastated husband & daughters to adjust to life without her. God bless them all.
Of course I meant closed their doors, not their food. Darn auto-correct!
From what I read, the closing is temporary while they downsize and restructure. They hope to reopen sometime in 2013. M
I tend to agree that evidence indicates very little of the increase in dollars spent are due to fraud, and more a result of increase in methods of care, aging, disease in general. Most people will not be able to pay out of pocket. It is heartbreaking and find myself attentive to these issues with aging parents, and of course my own health challenges. I tend to agree also that for the most part most facilities do their very best to help given what they have to work with, although I was never as frightened as when I required nursing home care for all the rumours. I have been reading all your blogs, but unable to comment lately. Thank you for consistent and thought-provoking writing! I am feeling very blessed myself, for the little nest egg I put away. Although I didn’t intend it for this and for now, I know that most people would not be able to live in as much comfort as I have these last few years. Your mother is indeed blessed. I overheard a conversation between the hospital social worker and the hospice team and a patient once while I was being admitted. They told her that although she was not yet terminal, they were utilizing the hospice benefit for cases such as hers. I tried not to listen, but it was one of those situations where you could not help but overhear. I was flat out myself but distracted myself by saying a prayer for this little old lady nearby in the holding area of the Emergency Room, separated only by a curtain. To this day I think of her and wonder how long she made it and if they were telling her the truth about her condition (not being terminal). When I was wheeled out I turned my head to her to smile and wave and noticed her sitting up with her bible on her table. I think of her to this day and wonder where on earth she ended up and how she was cared for. I hope your little mother continues to benefit from excellent care and doesn’t suffer but am so terribly sorry you are all having to suffer through this. You are so right to point out the need for us to think of the ones who are in situations that fall outside the necessary parameters set by bureaucracy. Thanks again for your excellent blogging. I will continue to keep your family in my prayers.
Thanks Dawn! M
I put my mother on hospice the first time in 2003. She was in a dementia ward in a lovely facility. Hospice provided her with a few extra baths a week and a visit or two a week from a chaplain and oversight by a hospice nurse.
My mother throve under all that attention and after 6 months they kicked her off hospice, which was actually fine with me at the time since she was doing much better, though I did make jokes about her “failing” hospice.
A year and a half later when she got pneumonia I called the Hospice people back and got many of the same folks to help her the 2nd time around. I was immensely grateful that I had had them already. We all knew each other, the social worker had already spent time with me, the chaplain knew and remembered her. It all went very smoothly. I couldn’t have asked for better care and it was such a blessing to have them all back.
Miranda is correct. The San Diego Hospice 24-bed inpatient unit (Inpatient Care Center) will temporarily close in January 2013 to explore options of re-licensure. Furthermore, San Diego Hospice continues to provide hospice care to nearly 700 patients throughout San Diego County. Care is usually provided in the patient’s home or wherever a patient resides (such as a skilled nursing, residential care, or assisted living facility). In addition to hospice care services, San Diego Hospice also continues to provide its grief and loss support services for those grieving the loss of a loved one.
Thank you Melissa. I appreciate your input–I do want to be correct in what I am saying. M
Get ready for more of this, unless the Liberal Media will not sow it on the local and National news. with Obamacare coming in, this will only get worse, I am afraid.