Recently, our former president, Jimmy Carter, decided to stop his own life-sustaining treatments to receive at-home hospice care so he can spend his final days surrounded by family and friends. When I was serving as my father’s healthcare surrogate, I had to make the decision to enroll him in hospice services at the end of his life.Whether or not to enroll a family member in hospice care is an issue that many families face and it can be very confusing. Here is an article outlining what hospice is, how to find one, and also how to spot a hospice company that might be practicing some Medicare fraud:
When faced with a terminal illness or condition, more people than ever are choosing hospice care over starting or continuing expensive medical treatments. Hospice care is for patients who choose not to undergo specific treatments or when they are no longer effective. Instead, the focus is on the patient’s comfort and quality of life. Care is received at home or in a facility, such as a hospital or a nursing home.
In addition to supporting the patient’s end-of-life needs, hospice care includes the needs and concerns of the patient’s family. Before opting for hospice care, patients should talk with their doctor and their family. Doctors recommend hospice care when they believe their patient has less than six months to live if their condition runs its course naturally.
The hospice care concept was brought to the United States in the 1960s by an English doctor and social worker named Cicely Saunders. It was designed to allow terminally ill patients to die with dignity in their homes surrounded by their loved ones instead of in hospitals while receiving expensive treatments that weren’t helpful. By the early 1980s, many hospice programs had become available throughout the United States. Recognizing the potential cost savings of hospice care over expensive and ineffective end-of-life treatments, President Ronald Reagan authorized Medicare to cover the costs of hospice care.
Benefits of Hospice Care
The biggest benefit for the hospice care patient is avoiding unnecessary and costly treatments when fighting a losing battle against their illness. Hospice patients can receive care that brings them pain relief and comfort while living their final days in their homes.
Though opting for hospice care means waiving treatment for the terminal illness, it doesn’t mean discontinuing all treatments. For example, if a patient has cancer that is not responding to chemotherapy but is also receiving treatment for high blood pressure, they can choose to start hospice care. Their chemotherapy would cease, but they could continue treatment for their high blood pressure. Hospice patients are less likely to receive medications and undergo tests they don’t need compared with patients without hospice care.
Even after starting hospice care, patients may choose to return to treatment for their terminal condition. They may choose to do this for any number of reasons. For example, they may be expecting a grandchild or great-grandchild. Later, the patient may continue with hospice care.
Medicare pays for some or all hospice care costs, and some private insurance plans may also cover certain expenses. Patients should check with their insurance provider to understand their coverage.
Some Hospice Care Providers are Exploiting the System
What started as a field of medicine primarily handled by nonprofits and charities now has a rapidly growing number of for-profit enterprises. According to a ProPublica article published in November 2022, for-profit hospice providers accounted for 30% of providers in 2000, and now they account for more than 70% of providers. The article states that between 2011 and 2019, the number of hospices owned by private-equity firms tripled.
Since Medicare covers hospice care expenses for eligible patients, providers bill Medicare for their services. Medicare pays hospice providers a set rate per patient per day, regardless of how much care they receive. Under this reimbursement arrangement, providers more interested in profiting from their patients than caring for them are incentivized to have as many patients as possible.
Since hospice patients often choose to live out the ends of their lives in their homes, a significant portion of their care is handled by family members who aren’t compensated for their efforts. Nurses aren’t required to visit more than twice a month. This makes it easy for unscrupulous providers to receive payment for minimal care.
Also, judging a patient’s eligibility for hospice care is difficult. Regulating the hospice care industry is challenging because no government agency wants to be seen as limiting a valuable service. Surveyors are only required to inspect hospice operations once every three years, allowing providers to operate with very little oversight.
A Call for More Oversight
In response to ProPublica’s article, the National Hospice and Palliative Care Organization released a statement condemning fraudulent and abusive behavior by bad actors. The NHPCO asserts that most hospice care providers are committed to the original vision of what hospice care should be: providing relief from suffering as well as comfort and support to people nearing the end of their lives.
In its statement, NHPCO referenced a letter that they, along with other national hospice care organizations, sent to the head of the Centers for Medicare & Medicaid Services (CMS) expressing concern about the rapid increase of new hospice care providers in certain states. Their letter to CMS encouraged the organization to increase federal oversight of their industry and invited them to meet and discuss suggestions for better regulation in this area of the healthcare industry.
Avoiding Hospice Care Providers Involved in Medicare Fraud
Knowing that unethical hospice care providers are out there looking for new patients can make it challenging to find a good provider. However, there are helpful resources.
A simple but effective way of finding a reputable provider is talking with trusted people. A patient's family, friends, and members of their religious organization are a great place to start. Online reviews can narrow down the selections, along with deeper research on the top choices. Learn whether a hospice provider is a nonprofit or for-profit company, how long they have been in business, and who owns them.
NHPCO has a program called CaringInfo that is a resource for people looking for hospice or palliative care. CMS's Hospice Center and the National Institute on Aging are other great resources for end-of-life questions.