Palliative Care at Home: How to Get It and Who Pays

When a parent has a serious illness, "palliative care" is the phrase the doctor says and nobody explains. Families hear "hospice." Or they hear "nothing more we can do." It is neither.

I'm an occupational therapist, and I've worked in home health. Some of my patients were on their way to hospice; some stayed on home health with illnesses that were never going to get better; a few had a palliative doctor making house calls alongside us. What I saw families struggle with was not the idea of comfort care. It was the plumbing: who orders it, who shows up, who pays, and what happens at two in the morning. This article is that plumbing.

A note on labels. A rule is a federal regulation, and I'll cite the paragraph. Manual guidance is CMS's coverage manual. Medicare.gov and the Medicare hospice booklet are Medicare's own plain-language pages, and I'll quote them. The National Institute on Aging is a named organisation, quoted. Anything labeled my experience or my suggestion is just that. If you want the long version of how palliative care differs from hospice, our guide to home health, home care and hospice has it. This article is about getting palliative care into the house.

The Short Answer

Palliative care is a kind of care, not a Medicare benefit. Medicare pays for the pieces, each under its own rules.
Three routes bring it home. A doctor or nurse practitioner visiting under Part B. A home health agency, if your parent is homebound and needs skilled care. Hospice, if your parent is terminally ill and chooses comfort care instead of treatment to cure.
What each costs in Original Medicare: usually 20% for the doctor's visit, nothing for covered home health services, nothing for hospice care itself apart from small drug and respite copays.
Hospice at home is visits plus an on-call line, not a shift. Continuous nursing at home is for crises. The family covers the hours in between.

What Palliative Care Is, in Medicare's Own Words

The hospice regulation defines the term. 42 CFR §418.3:

Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.

The National Institute on Aging (content reviewed May 14, 2021) says who delivers it: "A palliative care team is made up of multiple different professionals that work with the patient, family, and the patient's other doctors to provide medical, social, emotional, and practical support. The team is composed of palliative care specialist doctors and nurses, and includes others such as social workers, nutritionists, and chaplains." And where: "Palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics and certain other specialized clinics, or at home."

On the question families ask first, the same page says: "In palliative care, a person does not have to give up treatment that might cure a serious illness. Palliative care can be provided along with curative treatment and may begin at the time of diagnosis."

Now the plumbing.

Three Routes Into the House

	A doctor or nurse practitioner	Home health	Hospice
Who it's for	Anyone with a serious illness whose doctor refers them	Someone homebound who needs skilled nursing or therapy, on a plan of care	Someone certified terminally ill (6 months or less if the illness runs its course) who chooses comfort care
Who starts it	The treating doctor refers; the palliative practice decides whether it makes house calls	A doctor or allowed practitioner orders it after a face-to-face encounter	Your parent elects it in writing; a hospice doctor and the regular doctor certify
What you get	Visits from a palliative doctor, nurse practitioner or nurse; symptom management; advance care planning	Nurse and therapist visits, an aide if ordered, a social worker if ordered, for as long as the skilled need lasts	A team, equipment, supplies, drugs for symptoms, aide and homemaker help, counseling, on-call 24/7, short inpatient stays
Cost in Original Medicare	Usually 20% of the Medicare-approved amount after the Part B deductible; advance care planning free at the Wellness visit	Nothing for covered home health services	Nothing for hospice care; up to $5 per outpatient prescription; 5% for inpatient respite
Can treatment to cure continue?	Yes	Yes	No, not with Medicare paying, for the terminal illness and related conditions
The rule	Part B physician services	42 CFR §409.42; §409.44(b)(3)(iii)	42 CFR Part 418

The routes stack. A palliative doctor can follow your parent while a home health agency is visiting. When hospice starts, the hospice takes over care of the terminal illness, and the rest of Medicare keeps paying for unrelated problems.

Route 1: A Doctor or Nurse Practitioner Who Comes to the House

Outside hospice, palliative care comes from what the National Institute on Aging calls a palliative care team, "palliative care specialist doctors and nurses" with "social workers, nutritionists, and chaplains," seeing your parent where your parent is. Medicare.gov's page on doctor services says Part B "covers medically necessary doctor services and most preventive services," and you pay "usually 20% of the Medicare-approved amount." The page does not say "at home" and does not need to: Part B pays for the visit wherever the practice is willing to see your parent. Whether a practice makes house calls is up to the practice. That is the first question to ask when you call one.

The one piece of palliative care Medicare names and prices on its own is advance care planning. Medicare.gov: "Advance care planning involves discussing and preparing for care you would get in the future if you need help making decisions for yourself." Costs: "You pay nothing if your health care provider accepts assignment and this planning is part of your 'Welcome to Medicare' or yearly 'Wellness' visit. If you get it as part of other medical treatment, the Part B deductible and coinsurance apply." CMS's instructions to doctors (MLN909289) describe it as "a voluntary, face-to-face discussion between you and your patient or their family member, caregiver, or surrogate (as appropriate) to discuss the patient's health care wishes if they become unable to make their own medical decisions," billed under CPT codes 99497 and 99498, with no limit on how many times it can happen in a year when the patient's health or wishes change.

Finding one. The National Institute on Aging says: "Visit the National Hospice and Palliative Care Organization website to find palliative care near you." The Center to Advance Palliative Care runs a provider directory at getpalliativecare.org. My suggestion: ask the specialist treating the illness first. Oncology, cardiology and neurology practices usually know which palliative team they refer to, and a warm referral gets a faster first visit than a cold call.

Route 2: Home Health, If Your Parent Is Homebound and Needs Skilled Care

This is the route families miss, because home health is thought of as rehab after a hospital stay. It is also the route with no copay.

The rule that opens the door is 42 CFR §409.44(b)(3)(iii). It says the decision about whether skilled nursing is reasonable and necessary "must be based solely upon the beneficiary's unique condition and individual needs, without regard to whether the illness or injury is acute, chronic, terminal, or expected to last a long time." The manual says it again: a patient's overall condition should be considered "without regard to whether the illness or injury is acute, chronic, terminal, or expected to extend over a long period of time" (Medicare Benefit Policy Manual, chapter 7, §40.1.1).

So a terminal diagnosis does not disqualify your parent. What qualifies your parent is the ordinary home health test in 42 CFR §409.42: confined to the home, under the care of a doctor or allowed practitioner who establishes the plan of care, a need for intermittent skilled nursing or for physical therapy or speech-language pathology, and a face-to-face encounter. Our qualify checker walks you through those, and our article on who qualifies explains each one. The version of this argument written for agencies, with the CMS text, is palliative care under the home health benefit.

What it costs: Medicare.gov says "You pay nothing for covered home health services," and after the Part B deductible, 20% for Medicare-covered medical equipment.

What it looks like, from my experience: a nurse managing pain and symptom medicines and teaching you to give them; a therapist working on getting to the bathroom safely, or positioning in bed, or swallowing; an aide for bathing, a few times a week, if ordered; a social worker for the practical and the emotional. Visits, not shifts. Home health does not provide round-the-clock care, and Medicare's home health booklet lists 24-hour care at home as something it does not pay for; our article on 24-hour care at home covers who fills those hours and what it costs.

The skilled need has to be real and documented, and home health ends when it ends. If the goal has become comfort and the prognosis is short, the conversation turns to hospice.

Route 3: Hospice, Which Is What "End of Life Care at Home" Usually Means

Hospice is the one Medicare benefit built around palliative care, and Medicare.gov's eligibility list uses the word: your parent "must have Part A and meet all these conditions: Your hospice doctor and your regular doctor (if you have one) certify that you're terminally ill (with a life expectancy of 6 months or less). You accept comfort care (palliative care) instead of care to cure your illness and related conditions. You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions."

Where it happens

Medicare.gov: "You can usually get Medicare-approved hospice care in your home or other facility where you live, like an assisted living facility or a nursing home." The hospice booklet: "Hospice care is usually given in your home, but it may also be covered in an inpatient facility."

What the team is

The booklet says you and your family "are part of a team that may also include" doctors, nurses or nurse practitioners, counselors, social workers, pharmacists, physical and occupational therapists, speech-language pathologists, hospice aides, homemakers and volunteers. "In addition, a hospice nurse and doctor are on call 24 hours a day, 7 days a week to give you and your family support and care when you need it." The regulation behind that line is 42 CFR §418.100(c)(2): "Nursing services, physician services, and drugs and biologicals (as specified in § 418.106) must be made routinely available on a 24-hour basis 7 days a week. Other covered services must be available on a 24-hour basis when reasonable and necessary to meet the needs of the patient and family."

Volunteers are not decoration. 42 CFR §418.78(e): "Volunteers must provide day-to-day administrative and/or direct patient care services in an amount that, at a minimum, equals 5 percent of the total patient care hours of all paid hospice employees and contract staff." Ask the hospice what its volunteers do; in my experience the answer ranges from sitting with your parent so you can shower to nothing you will ever see.

What the plan of care can include

The booklet's list: doctor services, nursing care, medical equipment, medical supplies, prescription drugs for pain and symptom control, hospice aide and homemaker services, physical and occupational therapy, speech-language pathology, social worker services, dietary counseling, grief and loss counseling for you and your family, short-term inpatient care for pain and symptom management, short-term respite care, and "any other Medicare-covered services needed to manage your terminal illness and related conditions, as recommended by your hospice team."

Visits, not shifts: the part families don't expect

Medicare pays hospices by the day, in four kinds of day, and the kind of day decides who is in the house. 42 CFR §418.302(b)(1): "A routine home care day is a day on which an individual who has elected to receive hospice care is at home and is not receiving continuous care." That is the default. The team comes on a schedule, and between visits the care is yours, or a caregiver's you pay for.

The exception is the continuous home care day, §418.302(b)(2): a day on which the patient "receives hospice care consisting predominantly of nursing care on a continuous basis at home," and "Continuous home care is only furnished during brief periods of crisis as described in § 418.204(a) and only as necessary to maintain the terminally ill patient at home." §418.204(a) defines the crisis:

Nursing care may be covered on a continuous basis for as much as 24 hours a day during periods of crisis as necessary to maintain an individual at home. Either homemaker or home health aide (also known as hospice aide) services or both may be covered on a 24-hour continuous basis during periods of crisis but care during these periods must be predominantly nursing care. A period of crisis is a period in which the individual requires continuous care to achieve palliation and management of acute medical symptoms.

So the honest answer to "does hospice provide 24-hour care at home" is: the phone is answered 24 hours a day, nursing can be continuous during a crisis, and the rest of the time hospice is visits. The booklet's exclusion list makes the same point from the other side. The benefit does not cover "Room and board," and it does not cover care from a provider the hospice did not arrange. If your parent needs someone in the house around the clock and the family cannot be that someone, that is paid for the way 24-hour home care is paid for, by the family, Medicaid, long-term care insurance or the VA.

The other two kinds of day are short stays out of the house: general inpatient care "for pain control or acute or chronic symptom management which cannot be managed in other settings" (§418.302(b)(4)), and inpatient respite care, up to five days at a time so the family can rest (§418.204(b)). Our respite care article covers the respite benefit and its copay.

What it costs

The booklet: "Medicare pays the hospice provider for your hospice care. There's no deductible." You pay "A copayment of up to $5 per prescription for outpatient prescription drugs for pain and symptom management" and "5% of the Medicare-approved amount for inpatient respite care." The drug copay is 42 CFR §418.400(a): "the amount of coinsurance for each prescription may not exceed $5." And a protection worth knowing, §418.100(d): "A hospice may not discontinue or reduce care provided to a Medicare or Medicaid beneficiary because of the beneficiary's inability to pay for that care."

What your parent gives up, and how to take it back

Electing hospice is a trade. 42 CFR §418.24(g): "For the duration of an election of hospice care, an individual waives all rights to Medicare payments for" hospice care from another hospice, and "Any Medicare services that are related to the treatment of the terminal condition for which hospice care was elected or a related condition or that are equivalent to hospice care," except services from the designated hospice, a hospice it arranges, or the attending physician. Medicare keeps paying for problems unrelated to the terminal illness.

The trade is not permanent. §418.28(a): "An individual or representative may revoke the individual's election of hospice care at any time during an election period." The booklet says it plainly: "You always have the right to stop hospice care at any time." Election periods run 90 days, then 90 days, then an unlimited number of 60-day periods (§418.21(a)), with a new certification of terminal illness for each (§418.22(a)(1)). People do outlive six months on hospice; the periods are built for it.

If your parent is in a Medicare Advantage plan

Hospice is carved out. 42 CFR §422.320(c)(1) says no payment is made to the Medicare Advantage organization for an enrollee who has elected hospice, apart from a rebate and drug portion. In plain terms, Original Medicare pays the hospice. The booklet adds that if your parent joined a Medicare Advantage plan before hospice and stays in it, "your plan must give you a list of approved hospice providers in your service area."

What End-of-Life Care at Home Looks Like, Day to Day

This section is my experience, with the rules above as the frame.

The first days. A hospice nurse comes to the house, does the assessment, and the plan of care is built with you. A hospital bed, a commode, oxygen if needed, arrive within a day or two. A box of medicines for pain, breathlessness, agitation and secretions arrives, with instructions. Someone shows you how to give them. Write down the on-call number and tape it to the refrigerator.

A normal week. A nurse visit or two. An aide for bathing, several times a week if it's in the plan. A social worker and a chaplain if you want them. A volunteer if the hospice has a good program. In between, you: turning, cleaning, feeding while feeding still makes sense, giving the medicines, calling the line when something changes. That is the "routine home care day," and it is most days.

A bad night. You call the line. A nurse calls back, and often comes out. If symptoms cannot be managed with visits, the hospice can move to continuous care in the home or a short general inpatient stay. Those are the hospice's decisions to make under the rules above, and it is fair to ask the hospice, before you sign, how often it actually provides continuous care and where its inpatient beds are.

When you can't. Five days of inpatient respite, arranged by the hospice, more than once if needed, "but only on an occasional basis" in the booklet's words. Say yes to it earlier than you think you need to.

Questions I'd ask every hospice before choosing one. How fast do you come at night, and from where? Who is on your team for my parent, by name? How many aide visits a week, and how long? Do you provide continuous home care, and when did you last do it? Where would an inpatient or respite stay happen? What do your volunteers do? What is not covered that I should plan for?

How Palliative Care Differs From Hospice, in Two Sentences

Palliative care is comfort-focused care that can start at diagnosis and run alongside treatment meant to cure. Hospice is palliative care for someone certified terminally ill who chooses, in writing, comfort care instead of Medicare-paid treatment to cure the terminal illness. The longer version, with the rules, is in our home health vs home care vs hospice guide.

My Advice on the Order to Ask

Ask the treating doctor for a palliative care referral now, whatever the prognosis. It costs a Part B visit and changes nothing about treatment.
Ask whether your parent qualifies for home health. If your parent is homebound and there is a skilled need, it is the no-copay route and it brings a nurse into the house this week.
Ask about hospice when the goal changes, not when the last week arrives. The election periods are built for months, the team is built for the home, and you can stop it.
Plan the hours no benefit covers. Hospice and home health are visits. If your parent needs someone there around the clock, decide now who that is and what it costs.

Frequently Asked Questions

How do I get palliative care at home?

Start with the doctor treating the illness and ask for a palliative care referral. Three routes can bring it into the house under Medicare: a doctor or nurse practitioner who sees your parent at home under Part B, a Medicare-certified home health agency if your parent is homebound and needs skilled nursing or therapy, and hospice if your parent is terminally ill and chooses comfort care. The National Institute on Aging points to the National Hospice and Palliative Care Organization's website to find palliative care near you, and the Center to Advance Palliative Care keeps a provider directory at getpalliativecare.org.

Does Medicare pay for palliative care at home?

Medicare has no benefit called palliative care. It pays for the services that make it up, each under its own rules. A doctor's or nurse practitioner's visit is a Part B service, usually 20% of the Medicare-approved amount after the deductible. Advance care planning costs nothing when it happens during the yearly Wellness visit. Covered home health services cost nothing. Hospice costs nothing for the care itself, with a copayment of up to $5 per prescription for outpatient drugs for pain and symptom control and 5% of the Medicare-approved amount for inpatient respite care.

Does hospice provide 24-hour care at home?

Not as a rule. The default hospice day is a routine home care day: the hospice team visits, and the family or hired caregivers do the rest. A nurse and doctor are on call 24 hours a day, 7 days a week, and the regulation requires nursing, physician services and drugs to be routinely available around the clock. Continuous nursing care at home for as much as 24 hours a day is covered only during a period of crisis, to manage acute symptoms and keep your parent at home. Room and board is not covered, and neither is a round-the-clock aide outside a crisis.

What does end of life care at home look like?

Under hospice, a plan of care built by the hospice team with you and your parent; visits from nurses, aides, a social worker and others on a schedule, not a shift; equipment and supplies delivered; prescription drugs for pain and symptom control; an on-call line answered 24 hours a day; short-term inpatient care if symptoms cannot be managed at home; up to five days of inpatient respite at a time so you can rest; and grief counseling for the family. The family does the hands-on care between visits. Every hospice must also use volunteers for at least 5% of its patient care hours.

Can my parent get palliative care and still be treated for the illness?

Yes. The National Institute on Aging says that in palliative care a person does not have to give up treatment that might cure a serious illness, and that it can begin at diagnosis. The home health rule says the need for skilled nursing is judged without regard to whether the illness is acute, chronic, terminal or expected to last a long time. Only hospice asks your parent to give up Medicare payment for treatment of the terminal illness, and that election can be revoked at any time.

Sources

Federal rules (Cornell LII):

Medicare's own pages:

Named organisations:

Would your parent qualify for home health?

Answer six questions about your parent. The checker tells you whether Medicare home health is likely, which is the no-copay route to a nurse at home.

Check now

Palliative Care at Home: The Three Ways to Get It, What Each Costs, and What End-of-Life Care at Home Looks Like