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For the 86 percent of Americans who say they want to die at home, hospice programs make that desire increasingly possible. However, people often wait too long before seeking hospice care. In the United States, the average length of hospice care is less than 60 days. About 30 percent of those who elect hospice care die in seven days or fewer.
Misinformation about hospice and general discomfort with talking about end of life care prevent too many Medicare beneficiaries from taking full advantage of this valuable benefit.
A physician must certify patients as having a life expectancy of six months or less, if the illness runs its normal course. Living longer than six months does not mean the patient loses the benefit. After the initial certification period, each beneficiary receives an unlimited number of additional 60-day periods.
The hospice mission is to offer peaceful, holistic care through an interdisciplinary team, extending patients and their loved ones control at the end of life. Although many think of hospice as a site where the ill go to die, nearly half of hospice patients receive care at home. Patients can also receive specific hospice-related care in hospitals, nursing homes and dedicated, inpatient hospice inns.
This booming industry serves more than 1.5 million Medicare beneficiaries who are eligible via their Medicare Part A. Others receive benefits through Medicaid or the Department of Veterans Affairs.
However, not all hospice programs are created equal, and due diligence is necessary before enrolling. The buyer beware admonition is relevant when choosing among programs. Consumers should start early, as hospice is a big business. Soon after the confirmation of a terminal diagnosis is not too premature to begin research.
Hospice got its start in the 1970s, mostly through religious and nonprofit groups. Today, many providers are part of for-profit companies and large, publicly traded firms. In 2000, there were 72,425 beneficiaries receiving care in the top 10 for-profit hospice chains. In 2011, that number swelled to close to 250,000.
Hospice is a lucrative business. Medicare pays state-licensed agencies a fixed daily rate, regardless of the number of services provided on any given day. Medicare also pays on days when no services are provided. Collectively, these agencies receive nearly $16 billion a year in federal dollars to send nurses, social workers and aides to care for patients wherever they live.
To receive a daily fee from Medicare, hospices must stipulate in each patient’s care plan what services will be provided, when and by whom. They must update plans every 15 days and be on call 24/7 to keep patients comfortable. Because each patient is different, there is no mandate spelling out how often staff must show up at a home, except for a bimonthly supervisory visit. This is one reason why the consumer needs to do some homework.
The Centers for Medicare and Medicaid (CMS) launched The Hospice Compare website in 2017 to provide data on close to 4,000 hospices. Consumers can sort through options based on important quality metrics: the percentage of patients screened for pain, difficult or uncomfortable breathing, and whether patient preferences are being met. This website is not without its flaws, however, and it is not comprehensive enough for this all-important decision.
Naomi Naierman and Marsha Nelson were the President and Vice President, respectively, of the American Hospice Foundation, which closed its doors in 2014 after nearly 20 years of improving access to quality care. Upon leaving, they drafted a list of 16 questions that all consumers should ask when researching a hospice program.
Among the most essential is the question of response time, crucial for families when caring for patients in pain or slipping into death. How quickly will you hear from a professional when you make the call for help? In an interview with The New York Times, Naierman gave good advice:
That information is part of hospices’ standardized surveys. They ask family members, after death, whether the staff was available on weekends and on evenings. It’s one of many measures that are not available to the public yet, but it’s a fair question to ask: What can you tell me about your staff’s response time should I need your services on the weekend or on evenings? How long will I have to wait in an urgent situation?
Even though Medicare requires a set of services, the intensity of those services varies. Many families fear being alone at home with a dying loved one. This circumstance too often triggers an avoidable 911 call, an ambulance ride to a hospital and medical interventions ordered. A family’s fear and the chain of events that follow ultimately defeat the patient’s desire to die at home.
A hospice professional is supposed to be with a family during this time. How does the hospice program you are considering interpret “continuous care?”
Here again is another nuance exposed by Naierman:
There comes a time when you’re actively dying, in your last hours of life, and that calls for continuous care, 24/7. You want to ask whether it’s their practice to keep a nurse or another clinician in the home when a patient is actively dying. Does the family get support? Do they see the patient through death?
You would hope that in the last hours of life, hospice would maintain its presence, especially if you’re in your own home. However, in some states, a large percentage does not provide continuous care, which basically means that when you’re actively dying, they don’t stick around.
Inexplicably, almost one in eight hospice patients do not get visits from professional staff during their last two days of life, according to JAMA Internal Medicine. Families are left without the needed support.
Information, gathered well ahead of the final days of life, can provide an opportunity for families to cherish the time they have left with loved ones rather than the emotional trauma of an ill-informed decision that may haunt them for years.
Consumers deserve answers to their questions. In exercising rights to information, remember: if something doesn’t feel right, it probably isn’t. Move on. There are many very good and reputable hospice organizations ready to stand by you in your time of need.