What hospice does not do, and who does it instead

Medicare pays hospice at four levels, set out at 42 CFR 418.302(c): routine home care, continuous home care, inpatient respite care, and general inpatient care. Routine home care is the default: any day the person is at home and not receiving continuous care.

Continuous home care is the level families picture when they ask about 24-hour care, and it is narrow. The regulation allows it only during brief periods of crisis; 'period of crisis' is the phrase to use when you ask. To bill a day at that rate, a hospice must furnish at least 8 hours of care in the 24-hour day under 42 CFR 418.302; under 8 hours, the day bills as routine home care.

General inpatient care covers pain or symptom management that cannot be managed in other settings, delivered in an inpatient setting the hospice contracts with. Medicare's benefit manual is blunt that it is not a fix for an exhausted household: caregiver breakdown alone does not qualify.

Inpatient respite exists to relieve the people caring for the individual. It is occasional, capped at five days a stay. On day six the rate drops to routine home care and the family owes room and board. Respite is not available to someone already living in a facility.

Every Medicare-certified hospice must be able to furnish all four, and what happens is lopsided. MedPAC found that in 2024, 16 percent of hospice patients got a general inpatient day, 4 percent a respite day, and 2 percent one day of continuous home care. If nobody asks by name, nobody gets it.

When the answer is no, the substitute is private-duty home care. On CareScout's 2025 median of $35 an hour, KeptWell's arithmetic puts round-the-clock private-duty care at about $5,880 a week, $25,480 a month, and $305,760 a year. Medicare's own national rate for 24 hours of continuous home care was $1,674.29 in the year to September 2026, for hospices that submit quality data, before local wage adjustment.

For a veteran, the VA is the other source. Aid and Attendance pays up to $29,093 a year for a veteran with no dependents at December 1, 2025 rates, and the separate Survivors Pension with Aid and Attendance pays up to $18,697 for a surviving spouse with no dependents.

Everything past that is family hours. A 2020 study in the Journal of the American Geriatrics Society found people with dementia at the end of life averaged 64.5 unpaid care hours a week from 2.4 caregivers, and people with cancer getting 40 or more unpaid hours a week were twice as likely to receive hospice as those getting under six.

So ask by name what this hospice needs to see before authorizing continuous home care or a general inpatient admission. Then answer the question underneath: does this household have the hours, and if not, which level of care or which setting fills them?

This gap costs families the most. Medicare.gov states it plainly: Medicare does not cover room and board if you get hospice care at home, or if you live in a nursing home or a hospice inpatient facility. The benefit pays for the care. Somebody else pays for the bed and the building.

The sentence that follows on the same page is the one nearly every summary drops. If the hospice team determines that you need short-term inpatient or respite care that they arrange, Medicare covers that stay. So a general inpatient admission, and the first five days of a respite stay, are covered. A permanent move into a hospice residence is not.

What the room costs, at CareScout's 2025 national medians published in March 2026: assisted living $6,200 a month, $74,400 a year. A semi-private nursing home room $315 a day, $114,975 a year. A private room $355 a day, $129,575 a year. A hospice residence bills room and board privately too.

Medicaid is the usual answer for the room, and what it pays depends on your state. Nursing facility services are mandatory everywhere. Hospice, personal care, and state-plan home and community-based services are optional benefits, so whether Medicaid in your state pays for in-home personal-care hours has no national answer. Those services exist so people can be served at home instead of in an institution.

Ask the hospice social worker, in the first week, what your state's Medicaid program covers for someone in your person's situation, and who at the facility would bill you. Do it before the money question is urgent. The social worker knows, and that visit is already covered.

When you sign the election statement you sign a waiver, the real downside of hospice. Under 42 CFR 418.24(g), for the duration of the election you give up Medicare payment for care related to the terminal condition from anyone except the hospice you chose, a provider it subcontracts with, or your own attending physician. Your regular doctor can stay on as that attending physician and keep helping supervise the care. The excluded categories, in Medicare.gov's words: treatment intended to cure the terminal illness and related conditions, and drugs meant to cure rather than control symptoms.

The waiver is narrower than the rumor. Original Medicare keeps paying for unrelated health problems, with the usual deductibles and coinsurance. But CMS expects unrelated care to be 'exceptional and unusual' and the hospice to provide virtually all care the person needs.

Medicare Advantage does not change that. When someone in an Advantage plan elects hospice, Original Medicare pays the hospice benefit directly and the plan keeps covering unrelated care, which is why the hospice benefit is paid outside the plan. The demonstration that let some plans run the hospice benefit themselves ended on December 31, 2024.

Now the part almost nobody explains. Medicare's benefit manual says a hospice may use chemotherapy, radiation therapy and other modalities for palliative purposes if it determines they are needed, then adds the sentence that decides everything: no additional Medicare payment may be made regardless of the cost. The hospice pays out of the same daily rate it gets for everything else.

Which is why two agencies in the same city give different answers about the same course of palliative radiation. That is a budget and a philosophy, not a Medicare rule. So ask before you sign, about the specific treatment: radiation, chemotherapy, symptom-only infusions, transfusions? Children on Medicaid or CHIP can get hospice without giving up curative treatment; Medicare has no equivalent rule for adults.

Nothing here is permanent. Hospice runs in benefit periods: an initial 90 days, a second 90 days, then an unlimited number of 60-day periods, under 42 CFR 418.21. You may revoke at any time and elect hospice again later, giving up the remainder of that election period but not your future eligibility. If the real question is about morphine and whether comfort medicine shortens life, it is covered in what comfort care actually means.

You pay nothing for covered hospice care itself. The benefit covers drugs used primarily for the relief of pain and symptom control related to the terminal illness, and the only cost shares are these: up to $5 for each outpatient prescription for pain and symptom management, and 5 percent of the Medicare-approved amount for inpatient respite, capped at the inpatient deductible.

Everything else stays with Original Medicare or your Part D plan, with the usual deductibles and coinsurance, and the pharmacy computer does not know which is which. A blood pressure refill gets rejected three days after enrollment, and the family concludes that hospice took the medicine away.

It did not. That rejection is a prior-authorization flag, not a denial, and CMS told plans to put those flags on only four categories of drugs: analgesics, antinauseants, laxatives and antianxiety drugs.

CMS's instruction to plans was that they accept a statement from the hospice that the drug is unrelated to the terminal illness and override the rejection, without the beneficiary requesting a coverage determination. The statement can be as short as the word 'unrelated' or the letter U.

So do this: call the hospice, ask them to send the plan a statement that the drug is unrelated, and file nothing yourself. A hospice cannot request a coverage determination for you anyhow.

If the formulary does not carry a drug for the terminal illness and you refuse the formulary equivalent, you may pay for it yourself, Part D will not, and the hospice must tell you what you would owe.

The document that ends most of this argument has a title: 'Patient Notification of Hospice Non-Covered Items, Services, and Drugs,' usually called the election statement addendum. It must give a written clinical explanation, in language you can understand, for each item the hospice has decided is unrelated, and must tell you that immediate advocacy is available through the Medicare Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO) if you disagree with it.

For elections beginning on or after October 1, 2026, the hospice must hand every patient the election statement addendum within the first five days, with nobody having to ask, and update it within three days whenever the plan of care changes; for elections that began earlier it came only on request. So the thing to do has changed from ask for the addendum to read it, line by line, the week it arrives.

Two claims on the first page of search results are wrong. The first: that hospice covers no equipment. Under 42 CFR 418.202(f), covered appliances may include durable medical equipment and other personal comfort items related to the terminal illness, provided by the hospice for use in the patient's home. A hospital bed, a commode, a wheelchair: covered and delivered.

The second wrong claim is that hospice covers no housekeeping. Under 418.202(g), aides may perform household services in the areas of the home the patient uses, including changing bed linens and the light cleaning and laundering needed for the patient's comfort, and homemaker services are a separately named covered category.

The real boundary is elsewhere. That cleaning is scoped to the patient's comfort, not the household's, so nobody is doing the kitchen. And there is no hour guarantee anywhere in the hospice regulations. Aide time is whatever the plan of care says, which on MedPAC's 2024 numbers averaged about two visits a week.

Now the question that sends people to a forum at midnight: the person has oxygen bottles and wants a portable concentrator so they can leave the house. No rule entitles a family to any particular device. The regulation says appliances may include equipment and ties supplies to the written plan of care, which makes the specific item a plan-of-care decision by the hospice.

So ask for it as a plan-of-care item, by name, with the reason attached: what your person wants to do, and what the device makes possible. Ask at the interdisciplinary group meeting, where the plan of care gets written. If the answer is no, ask for it in writing and for the item to appear on the addendum.

If the answer stays no, families rent or buy the device privately. Ask the nurse for the prescription details, the flow rate and the hours a day needed, so a supplier can quote you. That quote is also the number to bring back when you appeal.

There is no homebound requirement in hospice. That is worth saying flatly, because families believe the opposite and act on it. Medicare home health does have one: 42 CFR 409.42(a) requires the beneficiary be confined to the home. The hospice rules in 42 CFR part 418 contain no such condition.

So a museum an hour away, a grandchild's wedding, a last afternoon at the lake: allowed, and nobody has to approve it.

The limits are practical rather than legal, and one costs real money. Medicare does not cover care you get as a hospital outpatient, including in an emergency room, care as a hospital inpatient, or ambulance transportation, unless the hospice arranged it or it is unrelated to the terminal illness. Medicare's instruction is to contact your hospice team first or you might pay the entire cost. The outing is free; the ambulance ride home from it is not.

The rest is logistics, and the hospice is good at it when you give notice. Ask the nurse how to time pain medicine around the trip, and whether the oxygen covers the hours you will be out.

Tell the nurse before, not after, and ask what to do if symptoms flare. If your person has an out-of-hospital do-not-resuscitate order it travels with them, which is one reason to have one. Our guide to DNR and DNI orders covers what each one stops.

The honest version is a range, not a broken promise. MedPAC reported in March 2026 that at the median hospice, 61 percent of patients received a visit from a nurse or social worker on at least two of the last three days of life. At a hospice in the bottom quarter, 43 percent. That difference is knowable before you choose.

Medicare pays extra for exactly those visits. Routine home care days in the last seven days of an election that ends in death qualify for a service intensity add-on, paying nurse or social worker time at the continuous home care hourly rate, up to four hours a day. Presence at the end is funded; whether it arrives is the agency.

When it does not, the cover is a family shift rota, paid night hours at the private-duty median of $35 an hour (CareScout, 2025), or a hospice volunteer. Volunteers are not decorative: 42 CFR 418.78 requires volunteer hours equal to at least 5 percent of all paid patient-care hours, in direct care as well as the office. Ask whether a volunteer can sit with the person.

When the death happens at home, nothing has to happen quickly, and the plan already exists. The National Institute on Aging puts it simply: if the person was in hospice, a plan for what happens after death will already be in place. Call the hospice, not 911, which is KeptWell's practical advice rather than anyone's regulation, because a 911 call brings a crew that may begin resuscitation unless a valid order is in front of them.

The order that stops that is the out-of-hospital DNR, which the same agency describes as the document that alerts emergency medical personnel to your wishes about restoring your heartbeat or breathing outside a hospital. It is not the same paper as a hospital DNR, and it has to be findable by a stranger.

A death also has to be formally pronounced, and a hospice nurse is one of the people who can do it. What the hours before that look like is covered in the death rattle and the last days of life, and the restlessness that often comes first is in terminal agitation.

Ask two things at admission. What is the on-call response time at 3 a.m., and who arrives? And do visits increase in the last week?

Start with the protection, because families worry about the wrong thing. A hospice may not discontinue or reduce care to a Medicare or Medicaid beneficiary because of that person's inability to pay. It may discharge a patient on exactly three grounds: the person moves out of the service area or transfers, the person is no longer terminally ill, or discharge for cause. Before a discharge for cause, the hospice must ascertain that it is not due to the patient's use of necessary hospice services.

A live discharge takes a written physician discharge order, the attending should be consulted first, and afterward regular Medicare resumes and the person may elect hospice again when eligible.

It is not rare. MedPAC reported that 19.1 percent of hospice discharges in 2024 were live discharges, up from 18.5 percent in 2023. Read that as discharges rather than patients, and note that it includes the ones families start: revocations, transfers, moves. You have three ways out yourself, none ending your future eligibility: revoke at any time, change provider once per benefit period, or be discharged with the protections above.

The more useful number is how much it varies. The median hospice discharged about 21 percent of patients alive in 2023; the worst tenth, 56 percent or more. MedPAC also reports that nonprofit hospices score higher on the family survey than for-profit, chain-owned and private-equity-owned ones, that in 2024 about 82 percent of hospices were for-profit and cared for 60 percent of patients, and that for-profits average a 120-day stay against 71 for nonprofits.

So ask what share of this agency's patients leave alive, and why. Ask what happens afterward, too: Medicare requires the hospice to make bereavement services available to the family for up to a year following the death, and bereavement counseling is required but not reimbursed, which is the honest explanation for why one agency sends a card and another runs a weekly group. What happens when someone stabilizes is in how to qualify for hospice.