Skip to content
If you are in crisis or having thoughts of suicide, call or text 988, any time.
One page to keep

Palliative care, or hospice? They’re not the same thing.

Even doctors and nurses mix these two up — and the confusion costs families time they don’t get back. Here is the difference in plain language, in a page you can print and bring to your next appointment or your kitchen table.

Yours to keep — no email, no sign-up. Print it, or save it as a PDF to bring along.

All hospice includes palliative care.
Not all palliative care includes hospice.
And it is never too soon for palliative care.

Comfort, alongside treatment

Palliative care

  • Added symptom and pain relief, plus emotional and practical support, while you’re still receiving curative or life-extending treatment.
  • Can begin as early as the day of diagnosis — inpatient or outpatient. You don’t stop fighting your illness to have it.
  • Billed like other physician services (by procedure code), so it can start early and run for as long as it helps.
  • For a serious condition, it is never too soon. Find a program near you (a national directory; it lists only programs that signed up, so ask your doctor too).
Comfort, when cure is no longer the goal

Hospice

  • A specific patient status — for someone a doctor expects to live six months or less — when care shifts fully to comfort rather than cure.
  • Most often provided where you live (home, or a nursing or hospice facility), by a team that comes to you.
  • Paid as an all-inclusive daily rate covering visits, medicines, and equipment.
  • Includes grief support for the family for up to a year after a death (often described as 13 months). Where to find it.
  • Watch for a scam. If someone offers free cleaning, cooking or other help at home in exchange for your Medicare number, they may be signing you up for hospice without telling you. If you are not terminally ill, you should not be in hospice. Report it to 1-800-MEDICARE (1-800-633-4227).

What they share

Both are delivered by an interdisciplinary team — a specially trained physician, a nurse practitioner or physician associate, a social worker, a chaplain, and often a pharmacist. Both support the whole family, not only the patient, and both center on what matters most to you: your goals, your comfort, and the questions that come with serious illness.

Write this one down, a single card at CareGoals: If you were very sick and not expected to get better, what would matter more? →

One thing worth knowing: hospice is not the same as the final days

Because hospice begins when a doctor certifies six months or less, many families hear the word and picture the end arriving within days. It rarely works that way. Six months is a starting point, not a deadline — care is renewed every two months for as long as the illness keeps progressing, and the body keeps its own timeline. Nearly one in five people enrolled in hospice stabilize or improve enough to leave the program for a while.* President Jimmy Carter lived nearly two years in home hospice. Coming to hospice sooner usually means more good time, not less — more comfort, more support for the family, and more of the life that’s still there to live. And none of it has to be one hard conversation: the talks that matter most are a series of small ones, begun from love long before a crisis makes them urgent.

One reason it starts late: doctors’ estimates run long. When 343 doctors predicted survival for 468 people being referred to hospice, only one prediction in five was close, and nearly two in three were too hopeful.† That is no one’s fault, and it is a good reason to ask about hospice early rather than wait to be told.

* National study of Medicare hospice discharges (Teno et al., Medical Care, 2014): 18.2% of patients were discharged alive. † Christakis and Lamont, BMJ, 2000 (PubMed): 20% of predictions were accurate, 63% too optimistic, 17% too pessimistic.

On hospice at home: for a symptom at 2 a.m., call the hospice first

Every Medicare hospice has nurses on call around the clock. For pain, breathlessness, agitation or another symptom of the illness, call that number before 911. The team can treat it at home, come to the bedside, or arrange a short inpatient stay that hospice covers.

Going to the emergency room does not end hospice by itself. Ending it, called revoking, takes a statement you choose to sign. But hospital care for the illness that the hospice did not arrange is not covered by hospice, and some families are asked to revoke to get it. Calling first keeps both doors open. In a true emergency, call 911.

On the first day, ask: what number do we call at night, where are the comfort medicines kept, and what changes should we expect in the last days? What families often see, and what helps. When the death comes: who to call first.

Write this one down, a single card at CareGoals: Where would you want to be? →

If you hear a percentage, like “she’s at 40%”

That is usually the Palliative Performance Scale (PPS). A nurse or doctor watches five things (walking, activity, looking after oneself, eating and drinking, and alertness) and gives a score from 100% (fully well) down to 0% (death), in steps of 10. It measures how the body is managing today. It is not a countdown.

What you can do: ask who gave the score, on what day, and what they saw. If it does not match what you see at home, tell them what you see: how far they walk, how much they eat and drink, how long they are awake. You live with the person; that is information the team needs.

If you hear “not hospice yet,” or hospice ends while you’re still here

Many people are too sick to manage alone but not expected to die within six months. Others improve on hospice and are discharged alive (Medicare’s rule is 42 CFR 418.26). Either way, the help that was coming to the house can stop. These are the doors that stay open:

  • Ask for palliative care. It has no six-month rule and can continue alongside treatment. Ask who will manage symptoms at home now, and how to reach them at night. To see programs near you, search the Palliative Care Provider Directory by address and setting (hospital, nursing home, clinic, or home).
  • If the illness is dementia, ask about GUIDE. Medicare’s GUIDE model runs from July 2024 to June 2032 through participating practices. It offers a care navigator and caregiver training. For people with moderate to severe dementia who have an unpaid caregiver, it can also pay for respite, up to a yearly limit. Ask the doctor whether a GUIDE program serves your area.
  • If no GUIDE program is near you, ask about a navigator anyway. Since January 2024, Traditional Medicare has paid for “principal illness navigation” for one serious illness expected to last at least three months, such as dementia, cancer or heart failure. A trained navigator, working under the doctor’s plan, helps with appointments, records and finding services. The doctor starts it at a visit and must ask you first, because the usual Part B cost-sharing (typically 20%) applies. If the person is in Medicaid’s Qualified Medicare Beneficiary (QMB) program, which helps with Medicare costs on a low income, they cannot be billed that share.
  • If you have Medicaid, ask about your state’s home and community-based services waiver. These programs can pay for help at home and for respite. In Colorado, the program for older adults is the Elderly, Blind, and Disabled (EBD) waiver. These waivers have extra rules and sometimes waitlists. Keep a record of the person’s needs for the case manager.
  • If you have a Medicare Advantage plan, ask what in-home support it lists for members with chronic illness. Some plans offer it. It varies by plan and by year.
  • Take care of the caregiver. familycaregive.com starts with where you are now.

“My late husband, Bob Lehmberg, MD, a palliative care and hospice physician, was — and continues to be — outlived by many of his palliative care patients. None of his hospice patients outlived him.”

— Jennifer A. O’Brien, on the difference that’s easiest to remember

Questions worth asking your care team

Bring these to your next appointment. You have every right to ask them.

  1. Is this treatment meant to cure my illness, or to help me feel better — or both?
  2. Could palliative care help me now, alongside the treatment I’m already getting?
  3. What would hospice change about my care — and how would we know when it might be the right fit?
  4. Who on my team coordinates my comfort and symptoms, and how do I reach them?
  5. If my time were short, what matters most to me — and does my care right now reflect that?
  6. If I’m not eligible for hospice yet, or I leave hospice, who manages my symptoms at home?
  7. Does the palliative care team work directly with my specialist (my oncologist, for example) — and can we all talk together?

Before you pick a hospice, ask it

The Medicare rule behind each answer is named, so you can hold the hospice to it.

  1. What happens in a crisis at home? Medicare can cover nursing at the bedside continuously, for as long as the crisis lasts, to keep the person at home (42 CFR 418.204(a)). Ask how fast someone comes.
  2. How do we get a break? Respite is a short inpatient stay to relieve the family, up to five days in a row at a time (42 CFR 418.204(b)). Ask where it happens.
  3. What grief support do you give the family? Every Medicare hospice must offer it for up to a year after the death (42 CFR 418.64(d)). Ask what it looks like.
  4. If we are not happy, can we switch? Yes: you can change to another hospice once in each benefit period, and that does not end hospice care (42 CFR 418.30).

Your rights with hospice: who decides it fits, saying no, and changing your mind

Asking about hospice is not signing up for it. These are the Medicare and Medicaid rules, named so you can point to them.

  1. Who says it fits. Only the hospice doctor and your own doctor, if you have one, can certify that life expectancy is six months or less if the illness runs its normal course; it is their judgment, and it is checked again each benefit period: two of 90 days, then any number of 60 days (42 CFR 418.22(b)(1); 418.21). You can ask your own doctor, or a hospice, for that evaluation. Not on Medicare? Hospice is an option each state chooses for Medicaid, so ask your state Medicaid office or your health plan what it covers (42 U.S.C. 1396d(a)(18) and (o)). Under Medicaid, choosing hospice for a child, as the state defines a child, does not give up treatment for the child’s illness (42 U.S.C. 1396d(o)(1)(C)).
  2. You can say no. On hospice you can refuse any care or treatment, help make your own plan of care, and choose the doctor who oversees it (42 CFR 418.52(c)(2)–(4)). Changing that doctor takes a signed statement naming the new one (42 CFR 418.24(i)).
  3. Told in words you understand. At the first visit, the hospice must tell you your rights out loud and in writing, in a language and a way you understand, and give you its written policy on advance directives (42 CFR 418.52(a)(1)–(2)). Hospitals, nursing homes, home health agencies and hospices must note in your record whether you have an advance directive, and cannot make your care depend on having one; complaints go to the state survey agency (42 CFR 489.102(a)(2)–(4)).
  4. What the hospice will not pay for, in writing. When hospice starts on or after October 1, 2026, the hospice must give you, within the first 5 days, a written list called “Patient Notification of Hospice Non-Covered Items, Services, and Drugs,” with a reason in plain language for each item; when a change in the plan of care changes the list, it must update it within 3 days. Signing it only says you got it, not that you agree. If you disagree, you can ask the Medicare Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO) for immediate advocacy; its contact information comes with the sign-up papers (42 CFR 418.24(b)(6)–(7), (c) and (d)). Started before that date? You can ask for the list (Medicare.gov, Hospice care).
  5. You can stop at any time. Ending hospice, called revoking, is a signed statement with a date no earlier than the day you sign it. Medicare then covers treatment for the illness again, and you can choose hospice again later (42 CFR 418.28; 418.24(h)). Under Medicaid, too, you can revoke at any time without giving a reason (42 U.S.C. 1396d(o)(2)(C)).

Rules read on the eCFR (current through 2026-10-26), at Cornell’s Legal Information Institute and on Medicare.gov, on 2026-10-28. General information, not legal or medical advice.

Write this one down, a single card at CareGoals: What would you not want? →

Where this comes from

The distinction and the closing line are drawn from “Palliative Care and Hospice: There’s a Difference,” by Jennifer A. O’Brien, whose late husband, Bob Lehmberg, MD, was a palliative care and hospice physician. Definitions reflect standard U.S. usage: palliative care is comfort-focused care provided alongside curative treatment from diagnosis onward; hospice is a Medicare benefit and care status for a prognosis of six months or less, and includes 13 months of family bereavement support. This page is educational and is not medical or legal advice; confirm eligibility and coverage with your own care team.

The last question comes from Hua et al., “Effective Palliative Care for Hospice Transitions,” JAMA Internal Medicine, September 2026 (doi:10.1001/jamainternmed.2026.4511): a qualitative study of six U.S. palliative care programs, 93 interviews with clinicians and people with metastatic cancer. Programs with more hospice use were the ones where the palliative and oncology teams knew and trusted each other and talked in real time. It is a small study that describes what those teams did; it does not show that asking will change your care.

“Not hospice yet”: live discharge, 42 CFR 418.26 (eCFR). Principal illness navigation (codes G0023 and G0024, from January 1, 2024): CMS, Health-Related Social Needs FAQs; qualifying conditions, the initiating visit and consent: Rural Health Information Hub. QMB enrollees owe no Part A or Part B deductibles, coinsurance or copayments: CMS, Qualified Medicare Beneficiary Program; checked 2026-10-21. GUIDE model dates, services and the respite cap: CMS Innovation Center, GUIDE (Guiding an Improved Dementia Experience) Model. The Colorado EBD waiver: Colorado Department of Health Care Policy and Financing, Elderly, Blind, and Disabled Waiver. All checked 2026-09-30. Calling the hospice first: nursing on call 24 hours a day, 7 days a week, 42 CFR 418.100(c)(2); short-term inpatient care for pain and symptoms, 42 CFR 418.108; revocation is a signed statement, 42 CFR 418.28 (eCFR); checked 2026-10-20. Finding a program: the Palliative Care Provider Directory, Center to Advance Palliative Care (GetPalliativeCare.org), which lists the programs that have listed themselves; checked 2026-10-20. The hospice scam warning: CMS, Medicare Hospice Fraud Toolkit; reporting: Medicare.gov; checked 2026-10-23. Payment details, Medicare Advantage and pending bills are on Health plans and payment.