What to expect from hospice: a guide and checklist for families

A short note before you start

This guide is general information for the United States, not legal, tax, financial or medical advice. Hospice rules come mostly from Medicare, so the federal facts here are consistent nationwide, but who may sign certain forms, notarize documents, or legally pronounce a death varies by state. Ask the hospice's social worker or admissions nurse about anything specific to your family.

What hospice is and what it covers

Hospice is a team-based program of comfort care for someone with a serious illness who is expected, if the illness runs its normal course, to have six months or less to live. The National Institute on Aging describes it as care that focuses on "the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life," rather than on curing the disease (National Institute on Aging, What Are Palliative Care and Hospice Care?, checked 2026-09-18). "Hospice" is a service that comes to the patient, most often at home, not a building you move into.

Who qualifies for hospice

To use the Medicare hospice benefit, a person needs Medicare Part A, a doctor's certification of a six-month-or-less life expectancy if the illness runs its normal course, and a choice to accept comfort-focused care over treatment aimed at curing the illness (Medicare.gov, Hospice Care, checked 2026-09-18). The patient or their representative signs a hospice election statement to start. Choosing hospice is not permanent; it is revisited at every recertification and can be revoked at any point.

What the Medicare hospice benefit pays for

Once someone elects hospice, Medicare Part A pays for services the hospice team arranges for the terminal illness: nursing visits, a doctor overseeing the plan of care, home health aide and homemaker help, social work, chaplain visits, medical equipment such as a hospital bed or wheelchair, medications for pain and symptoms, short-term inpatient care for symptom crises, and inpatient respite care to give a family caregiver a break (Medicare.gov, Hospice Care, checked 2026-09-18). Respite stays are limited to five consecutive days at a time, though a family can use respite more than once (CMS, Medicare Benefit Policy Manual, Chapter 9, checked 2026-09-18).

What hospice does not cover

Hospice does not cover treatment meant to cure the terminal illness once it has been elected, room and board in a facility (unless it is short-term inpatient or respite care the hospice arranges), or emergency room visits and ambulance rides that were not set up through the hospice team (Medicare.gov, Hospice Care, checked 2026-09-18). Care for conditions unrelated to the terminal diagnosis, such as a broken wrist from a fall, is generally still billed to regular Medicare.

What it costs

What to expect once hospice starts

The care team and how often they visit

A hospice team typically includes a nurse who acts as the main point of contact, a hospice physician who oversees the plan, a home health aide for bathing and personal care, a social worker, and often a chaplain and trained volunteers. Visit frequency changes with need: a nurse might come once or twice a week early on and daily, or a family may add continuous nursing, as symptoms increase. The hospice is reachable by phone around the clock; that number, not 911, is the one to call for hospice-related concerns, including at the time of death.

The dying process: what changes in the final weeks and days

Families often say no one explained what dying actually looks like. In the final weeks, appetite and thirst usually drop, sleep increases, and the person withdraws socially. In the final days, breathing patterns often change and skin may look mottled. The National Institute on Aging notes that noisy or rattling breathing near the end is common and, despite how it sounds to family, "is usually not upsetting to the dying person" (National Institute on Aging, Providing Care and Comfort at the End of Life, checked 2026-09-18). The hospice nurse will describe what to expect for your situation and is available by phone if something looks different.

Revoking or changing hospice

Hospice is voluntary at every stage. A patient or their representative can revoke the election at any time by giving the hospice a signed, dated statement; regular Medicare coverage, including treatment aimed at a cure, starts again immediately (eCFR, 42 CFR 418.28, checked 2026-09-18). A person can also re-elect hospice later if a doctor again certifies a six-month-or-less prognosis. Families can also change to a different hospice once per benefit period if the fit is not right (Medicare.gov, Hospice Care, checked 2026-09-18).

What families do to prepare

Before hospice starts: documents to have ready

Having a few documents ready before the first hospice visit saves time and avoids scrambling during a hard week.

• Advance directive (living will and health care proxy). States wishes and names someone to make medical decisions if the person cannot. CaringInfo offers free, state-specific forms (CaringInfo, checked 2026-09-18).
• POLST (or your state's version, sometimes called MOLST or POST). Medical orders, signed by a clinician, for someone already seriously ill. It "will be honored by emergency medical technicians" and travels between home, hospital, and nursing facility (CaringInfo, Portable Medical Orders (POLSTs) vs Advance Directives, checked 2026-09-18). Not everyone needs one; ask the hospice team.
• Durable power of attorney for finances. Names someone to pay bills while the person is alive. This authority "ends when the principal dies," so it cannot be used to settle the estate afterward (Consumer Financial Protection Bureau, Help for Agents Under a Power of Attorney, checked 2026-09-18). See Power of attorney ends at death.
• Do-not-resuscitate (DNR) order, if wanted, signed by a physician.
• A current medication and allergy list, for care coordination.
• Insurance cards: Medicare, Medicaid, VA, or private insurance.

This is the kind of information a family guide, such as the one Omliva helps families build in your guide, keeps in one place along with where the originals are stored and who holds copies, so it is not a scramble to find later.

Questions to ask a hospice before choosing one

Medicare-certified hospices vary in staffing, services, and reach. Consider asking:

1. How quickly can someone reach a nurse after hours, and how fast do they typically respond?
2. How many patients does each nurse cover?
3. What levels of care do you offer if symptoms spike (continuous home care, inpatient care)?
4. Do you provide chaplain, music, or pet therapy, and how are volunteers used?
5. What does the on-call process look like on a weekend or holiday?
6. How do you support caregivers, and what does bereavement support look like after the death?
7. What is your average patient satisfaction or complaint history, and can I see it?

Preparing the home

A hospital bed, commode, oxygen, and wheelchair are commonly delivered at no extra cost once the team orders them. Clear a path to the bedroom and bathroom, set up a bedside table for supplies, and keep a notebook for the nurse's instructions. Ask about safe storage of opioid medications, since they pose a poisoning risk to children, guests, or pets.

The paperwork after a death in hospice

Who to call first

When death happens at home under hospice care, the first call goes to the hospice's 24-hour line, not 911. A nurse comes to confirm the death and begin the paperwork; there is no need to move the body or start CPR.

Pronouncement and the death certificate

Someone legally authorized has to pronounce the death before the body can be released to a funeral home. Many states allow a hospice registered nurse to do this for an expected, hospice-related death, but the exact rule, and who else may do it, varies by state (Nurse.com, Are RNs Allowed to Pronounce a Patient Deceased?, checked 2026-09-18). The hospice typically helps complete the paperwork that documents the time, place, and cause of death, which the funeral home or vital records office uses to issue the certified death certificate. See What to do when someone dies for the notifications and copies of the certificate you will need next.

Medications, equipment, and the body

Federal law lets, but does not require, trained hospice staff to help dispose of a patient's unused controlled substances, such as opioids, right after a death (U.S. Government Accountability Office, Disposal of Controlled Substances in Home Hospice Settings, GAO-20-378, checked 2026-09-18). Ask the hospice nurse to handle this rather than keeping leftover medication in the house. The hospice's equipment vendor will also arrange pickup of a rented hospital bed, oxygen, or wheelchair. The hospice team can call the funeral home for you if one has not already been chosen, and many stay with the family until the funeral home arrives. See Funeral planning checklist for choosing and working with a funeral home.

Bereavement support

A Medicare-certified hospice must make bereavement services available to the family for up to a year after the death (eCFR, 42 CFR 418.64, checked 2026-09-18). This commonly includes phone check-ins, mailed materials, and referrals to grief counseling or support groups. Ask the hospice social worker what their program includes before the person dies, since it is easier to ask questions early than during the first difficult weeks.

When to get professional help

Talk with the hospice social worker or a probate attorney if minor children will need a new guardian, if there is property in more than one state, or if family members disagree about care or the estate. Bring in an elder law attorney to review an advance directive, POLST, or power of attorney if any are missing, unclear, or old. A hospice chaplain or grief counselor, included in the benefit, is worth using even if the family is not religious; the support is about coping, not doctrine.