The Ugly Side of Hospice Care

Q. My mother is ready to transition to hospice care. She has very advanced dementia, severe arthritis, and is immobile. With all of the assistance that she needs, we can no longer care for her in my home, even with the help of nurses and aides, and we probably should have transitioned her to a skilled nursing facility years ago. When it comes to hospice care, however, I have heard some stories of lack of care being available when patients need it the most. Is that true? Would nursing home care be a better option?

Thanks for your help!


First, let me clarify that hospice is not typically a place, but rather a type of care. Hospice care can be delivered at home, in an assisted living community, in a nursing home, and in a facility solely dedicated to hospice care, though these facilities are rare.

Unfortunately, what you read about hospice care is sometimes true, based on recent research. A Kaiser Health Care investigation found that the hospice care that people expect — and sign up for — sometimes disappears when they need it most. In fact, families across the country have called for help in times of crisis and have been met with delays, no-shows, and unanswered calls.

As an example, in the small town of St. Paul, VA, Ms. Virginia Varney enlisted Medical Services of America Home Health and Hospice to care for her son, who was dying of skin cancer. On his final day, he was vomiting blood and in intense pain. Varney called at least four times to get through to the hospice provider. Hours later, she said, the hospice sent an inexperienced licensed practical nurse who looked “really scared” and called a registered nurse for backup. The RN never came, and her son died that night.

Varney said that when she signed up for hospice care, “(t)hey told me 24 hours a day, seven days a week, holidays and all. I didn’t find that to be true.”
Varney’s story is one of many reported by Kaiser in their recent article, ‘No One Is Coming’: Hospice Patients Abandoned At Death’s Door.’

And, what is being reported is not new. To better understand the quality of services rendered to terminal patients, The Washington Post also conducted its own analysis a few years ago. Researchers analyzed the Medicare billing records for more than 2,500 hospice outfits, obtaining an internal Medicare tally of nursing care in patients near death, and the Post reviewed complaint records at hundreds of hospices. Their findings were as follows:

• The scarcity of care affects the patients most in need. While many home hospice patients require little more than weekly nursing visits, some encounter crises in which their symptoms — pain, breathing troubles, seizures and so on — flare up in ways that cannot be controlled without sustained attention. For those cases, hospices are supposed to be able to provide either “continuous” nursing care at home or inpatient care at a medical facility. But about one in six U.S. hospice agencies did not.
• No care available when its needed most: At 445 of the hospices, a third or more of patients died without having seen a skilled nurse in the 48 hours before their death.
• The absence of such care left hospice patients to suffer or find other options. Some suffered in pain. Others had breathing difficulties, with some unable to get an answer about why their oxygen tanks weren’t working. And some were compelled to leave their homes, and to drop hospice services and head by ambulance to the emergency room, a difficult place for the frail and dying.
• Economic incentives posed by Medicare payment rates could be a big part of the problem. Providing patients with “routine” levels of care, which typically includes semiweekly nursing visits, can be very profitable. But providing continuous bedside nursing care or inpatient care to needier patients can be a financial and logistical drain for small and mid-size agencies, hospice owners said.
• Quality of hospices is not available to consumers: Though the federal government publishes consumer data about the quality of other health-care companies, including hospitals and nursing homes, it provides no such information about hospices. State inspections are often unpublished and, when they are published, they are often hard to understand. So a family is typically choosing hospice care blindly with no idea if it is truly a good option for their loved one.
• Safety concerns due to infrequency of inspections: The typical hospice provider in the U.S. undergoes a full government inspection about once every six years, according to federal figures, making it one of the least-scrutinized areas of U.S. health care. By contrast, nursing homes are inspected every year, and most hospitals every three years. According to The Washington Post, “the dispersal of patients makes oversight difficult to begin with, but the infrequency of inspections means shortcomings are even less likely to be detected.”
• Rising discharge rates: of patients who need to seek treatment elsewhere: Even though the obvious goal of every hospice organization is to provide care for its patients until death, more than one in three patients are released from hospice care while still alive, according to a new study funded by Medicare. It is normal for hospice to release a small portion of patients before death (15%), but when the rate of patients leaving hospice care alive is double that level, it can signify either that agencies are driving the patients away with inadequate care, or enrolling patients in the first place who aren’t really dying — often in order to pad their profits.

Nursing Home Hospice Care May be a Better Option than Home Hospice Care

As you can see, many hospice providers are failing to provide quality care for patients at end of life, especially when that care happens at home. Unlike hospices, nursing home are staffed with nurses and doctors 24/7, making them (in many cases) a better choice for a loved one’s long-term care needs and end-of-life needs, and hospice care can just as easily be provided in the nursing home as it can at home. Many nursing homes have a contract with one specific hospice provider, so if you have a loved one in a nursing home, you might not have a choice in picking a hospice provider. However, you know that if you’re in a nursing home, you’re not going to be left without care at end-of-life even if the hospice provider fails to show up.

Nursing homes in the DC Metro area cost $10,000-14,000 a month

To protect your family’s hard earned money and assets from the catastrophic costs of nursing home care, the best time to create your long-term care strategy is before you actually need long-term care. If you’re over 65, we recommend that you begin your asset protection planning now. Even if you are currently receiving long-term care services for yourself or a loved one, it’s still not too late to plan and protect assets and improve dignity and quality of life. Please call us to make an appointment for an initial consultation:

Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-1435
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.