In 2021, 1.7 million Americans chose hospice services, which provide comfort, care, and support for those nearing the end of life.
To receive hospice care, a patient must meet these three conditions:
Have a terminal diagnosis as determined by a hospice doctor and another doctor (often the referring physician), who must confirm that the patient has a life expectancy of six months or less.
The patient must agree to accept comfort care (also known as palliative care) instead of medical care to cure the illness.
The patient must sign a statement electing hospice care instead of other treatments for the terminal illness and related health issues, although the document can be revoked at any time by the patient or surrogate decision-maker.
If you’re unsure about how hospice works, you’re not alone.
“There are many misconceptions about hospice care, and we often receive questions about where, what, and how hospice services are provided,” says Amy Tucci, president of Hospice Foundation of America.
One of the biggest questions Tucci and her team receive is how to pay for hospice care.
Medicare and other coverage of hospice care
While many types of Medicare coverage can be confusing, Medicare hospice coverage is straightforward: it’s covered. In full, for the most part.
If you have Medicare Part A, you may have a few expenses:
A copayment of up to $5 for each prescription drug received on an outpatient basis. However, Medicare Part D may also cover it.
A 5% fee of the Medicare-approved amount for in-patient respite care. This copay can’t be greater than the annual inpatient hospital deductible.
Medicare Advantage plans cover hospice services and may even offer additional coverage beyond basic Medicare, such as a certain number of hours of help from an aide outside of your hospice program.
Patients can choose from any of the Medicare-certified hospice providers in their local area, which vary from one or two to 10 or even 50 in some states, like California.
Most state Medicaid programs cover hospice services, and those that don’t, says Tucci, typically have state programs that cover hospice services. Veterans often have hospice services through their VA insurance, which can contract with community hospice providers as well as providing care through VA facilities, she says.
Many employer-sponsored health insurance, as well as private pay health insurance, covers hospice services, says Tucci, but it’s a good idea to review your coverage.
Coverage for routine hospice care
You may be familiar with a local in-patient hospice location, often known as a hospice house, but that’s not the norm for hospice services. In fact, in order to get certification from Medicare, a hospice program is required to have 80% of its patients in their own homes. Home is broadly defined as where the patient lives, and can be a private residence, nursing home, or other residential facility.
Hospice care in the home is often misunderstood, says Tucci.
“Hospice is a wonderful service meant to help family caregivers,” says Tucci. “But except in times of crisis, that help doesn’t usually include a registered nurse (RN) or certified nurse’s assistant (CNA) taking care of the patient in the home around the clock.”
The average number of visits from a CNA is three times a week, and an RN visits at least once a week, but this can vary based on the individualized plan of care, Tucci said.
This is the first level of hospice care, also called routine care. Here’s how it works: “During the admission visit an RN and/or a social worker will come to the home and evaluate everything that’s needed for the patient,” says Tucci. “Often they will order equipment, such as a hospital bed and mattress, a bedside commode, and oxygen, to be delivered to the home, along with any medications needed for symptom management. The nurse will typically explain how to administer medication and handle daily care tasks. A plan of care will be developed by the hospice team and shared with the family. The care plan will address the medical, social, physical, and spiritual needs of the patient and caregivers.”
While the family caregivers will be responsible for the majority of caregiving needs, the hospice interdisciplinary team will assist, and advice is available through the hospice’s helpline 24/7/365.
Additional care and services provided by hospice
In addition to routine care, there are three other levels of hospice care that Medicare-certified hospices are required to provide:
- Continuous home care: When a patient is in crisis and needs extra support, a hospice nurse can provide bedside services. This is typically only available for short periods of crisis if help is needed for a patient to stay at home.
- In-patient respite care: If a caregiver needs rest, a patient can choose to get hospice care in an approved inpatient facility for up to five days.
- General inpatient care: If pain or symptoms can’t be managed in other settings, a patient may choose to be admitted to an inpatient hospice facility until symptoms are managed and the patient may later return home.
Respite care may also be provided in the home by trained hospice volunteers if they are available. Under Medicare law, 5% of patient care hours must be provided by hospice volunteers, but that was suspended during COVID-19. The Centers for Medicare & Medicaid Services (CMS) will reinstate the rule on Jan. 1, 2024. Volunteers typically provide services such as companionship, music therapy, aromatherapy, or assistance with household tasks.
Social workers and grief counseling are also available during hospice and after a loved one’s passing. In fact, Medicare-approved hospice providers are required to provide 13 months of grief support to the intimate network of a loved one in hospice, says Tucci. This is often in the form of support groups, both in-person and online.
Common end-of-life expenses not covered by Medicare-approved hospice providers
“Sometimes caregivers need or want to hire extra aides to help them manage the 24/7 caregiving process of a loved one who is in hospice at home,” says Tucci. Those expenses are typically not covered, although, as mentioned, some Medicare Advantage plans might cover limited additional help. She suggests checking with your insurance provider.
Other expenses not covered:
Ambulance transportation unless it’s arranged by hospice. If you believe your loved one needs ambulance transportation (such as from a hospital to your home) necessary for their comfort and well-being, check with your hospice provider to see if it’s covered.
Room and board if the patient lives in a facility (such as a nursing home) and chooses to get hospice care there.
Routine food and nutritional supplements, such as Ensure.
Blood transfusions (on a case-by-case basis this may be covered—check with your hospice provider).
Emergency department visits or hospitalizations not authorized or arranged by the hospice.
Visits to specialist medical providers for consultations related to the hospice terminal diagnosis.
