Linda Rodgers was shocked to see her father in so much pain when she visited him at his hospice facility. In a letter she wrote to the editor of USA Today, she described how her father had his pain controlled by medication while in the hospital, before admission to hospice, but was in severe pain from Wednesday through Sunday in the hospice facility.
Linda described how the hospice nurse visited her father at the time of admission on Wednesday, slapped a pain patch on him, and never came back to adjust the pain medications to make sure his pain was controlled. Although he was suffering, the only visits he received were from an aide on Thursday and Friday morning for a brief period of time, but there was nothing done to assist him further. Linda was appalled that the hospice did not even try to control her father’s pain, which was so severe he could not be touched or moved once under the hospice’s services, and no services were provided on the weekend, even though all hospices are reimbursed by Medicare for services every day the patient is there.
Unfortunately, Linda’s father’s case is not at all unusual, but some hospices are better than others. Hospice is designed to be an alternative to regular medical care for people in the final months of life. Instead of continuing to try curing or delaying a fatal disease or condition, hospice ends curative treatment altogether, and is supposed to focus on pain control.
Hospice use is currently on the rise. In fact, today roughly half of older Americans who die have received some hospice care — which has created a boom in the industry. In 2012, Medicare spent more than $15 billion on hospice care. But, hospices are being scrutinized. . . and for good reason.
Medicare data suggests that for-profit hospices actively seek out healthier patients in order to book greater profits. One way they do so is by admitting a greater proportion of patients with diseases such as dementia or Alzheimer’s, where predicting the end of life is often uncertain. Nonprofits, in turn, are more likely to serve short-living patients, such as those with late-stage cancer, where death is imminent and the cost of care is more expensive.
The Washington Post investigated whether hospices are safe and how they sometimes decline to provide proper care. To conduct the study, The Washington Post analyzed the Medicare billing records for more than 2,500 hospice providers, obtained an internal Medicare tally of nursing care in patients near death, and reviewed complaint records against hundreds of hospice providers.
Let’s explore the findings uncovered by The Washington Post:
- Lack of information: About one in three hospice patients were not given key information about what the choice of hospice care entails at the time they enrolled, according to a report by the Office of Inspector General of the Department of Health and Human Services. In the investigation, government inspectors reviewed a random sample of the documentation that patients sign to indicate they want hospice care. In many cases, the patient was not informed that electing hospice meant that they intended to forgo a cure for their terminal illness — a critical distinction between hospice care and other health services. Hospices provide “palliative care” – which is designed to be care focused on the prevention and alleviation of pain and suffering. Some hospice families claim they were pressured into hospice treatment without fully understanding that doing so meant forgoing curative treatment, and that their loved one was mistreated or ignored.
- Lack of attention by physicians: According to The Washington Post, “In about 14% of cases, the physician who is supposed to approve the enrollment of a patient in hospice care paid only cursory attention to the matter. They provided scant information about the patient’s prognosis, and appeared to have limited involvement in determining that the [patient] was appropriate for hospice care,” according to the report.
- Patient neglect: Hospices provide care at home or inpatient care at a medical or nursing facility. However, when some home hospice patients encounter crises—including pain, breathing troubles, or seizures — and need sustained attention, they are sometimes not getting the assistance they need. According to The Washington Post investigation, one in six U.S. hospice agencies, serving more than 50,000 terminally ill patients, did not provide crisis care to any of their patients in 2012. In fact, at 445 hospices, a third or more of patients died without having seen a skilled nurse in the 48 hours before their death.
- Safety concerns: 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 a year, and home health agencies 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: Even though the obvious goal of hospice is care for their 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. This is a sign that patients may be leaving to seek treatment elsewhere. 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.
- Lethal doses: With the surge of hospices enrolling patients who aren’t close to death, hospice patients who are not actively dying are nevertheless being treated with powerful pain-killers that are routinely used by hospice providers in order to ease suffering and at the same time hasten death. There are no statistics on how often such abuses may be occurring, but complaints from around the country illustrate the potential dangers of overdosing and drug dependency and addiction caused by enrolling a non-dying relative in hospice care.
- Quality of hospices: Though the federal government publishes consumer data about the quality of other health-care companies, including hospitals, nursing homes, and home health agencies, 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.
- Attitudes of nurses and clinicians: Nurses and clinicians who work for hospice providers feel powerless to change the system. Although they feel frustrated and may disagree with the aggressive treatment and whether it is necessarily warranted, they have to do what they are legally required to do.
Beginning in 2009, and continuing every year since, MedPAC has called on Centers for Medicaid and Medicare Services (CMS) to change the incentive structure to discourage the cherry-picking of longer-living patients. Just recently, CMS finally took the advice — in part. CMS proposed a new structure for this fiscal year that would pay providers about $40 less per day for each day a patient stayed on the service after 60 days. In a letter commenting on the proposal, MedPac described the adjustment as a “positive step,” and also “modest and incremental.”
Still, many hospice providers are failing to provide quality care for patients, and the industry suffers from safety concerns due to infrequent inspections, lack of crisis care, lack of reporting consumer data, admission of people who aren’t dying and who eventually get discharged, and other issues. Unlike hospices, nursing home facilities are inspected once a year and have much consumer data and research available to help you choose the right facility, making them (in most cases) a better choice for a loved one’s long-term care needs. However, the two are not mutually exclusive, because hospice care can and often is provided to patients residing in nursing homes.
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 these catastrophic costs, 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 services for yourself or a loved one, it’s still not too late to plan. 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
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DC Elder Law Attorney: 202-587-2797
About Evan H Farr, CELA, CAP
