Hospice and your wishes: who speaks for you at the end
The short answer
If a hospice patient can't speak, decisions go to the person with legal authority under state law. That is usually the agent named in a medical power of attorney, then a guardian or relatives in the order the state sets. Medicare lets that representative elect or stop hospice. Written wishes tell them what you'd want.
Hospice is care for comfort, usually at home, when a cure is no longer the goal. Many families meet it in a hurry, often when the person at the center can no longer say what they want. So the question comes up fast: who decides now?
This post answers that question and explains the basics of the Medicare hospice benefit, using Medicare.gov as the source. It is part of our guide to what happens if you can't speak for yourself. Washington is the worked example for the state law.
What is the Medicare hospice benefit?
Medicare's hospice booklet describes hospice as care and support for people who are terminally ill, and for their families. The focus is comfort, not curing the illness. It is not only for people with cancer.
Hospice is part of Medicare Part A. Medicare.gov lists the conditions to qualify:
- You have Medicare Part A.
- Your hospice doctor and your regular doctor (if you have one) certify that you are terminally ill, with a life expectancy of 6 months or less.
- You accept comfort care (palliative care) instead of treatment to cure your illness.
- You sign a statement choosing hospice care, called the Hospice Election Statement.
Before choosing, Medicare also offers a one-time consultation with a hospice medical director or hospice doctor. You can have it even if you decide not to start hospice.
What hospice includes
You and your family work with the hospice team to set up a plan of care. According to Medicare's booklet, the team may include doctors, nurses, social workers, counselors, hospice aides, homemakers and volunteers.
A hospice nurse and doctor are on call 24 hours a day, 7 days a week. The plan can include equipment like a walker or wheelchair, drugs for pain and symptoms, and grief counseling for you and your family.
Care usually happens wherever you live: your home, an assisted living facility or a nursing home. Short inpatient stays can be arranged when the team decides you need one.
What it costs and how long it lasts
| Item | What Medicare.gov says |
|---|---|
| Hospice care from a Medicare-approved provider | Nothing |
| Outpatient drugs for pain and symptoms | Up to $5 per prescription |
| Inpatient respite care, so a family caregiver can rest | 5% of the Medicare-approved amount, up to 5 days each time |
| Room and board at home or in a nursing home | Not paid by the hospice benefit |
| How long | Two 90-day benefit periods, then unlimited 60-day periods |
| After 6 months | A hospice doctor recertifies, after a face-to-face visit |
Two more points matter. Original Medicare still pays for health problems unrelated to the terminal illness, with the usual deductibles and coinsurance. And you can change hospice providers once in each benefit period.
Who makes decisions in hospice if the patient can't speak?
This is the heart of it. Medicare's rules let a patient's representative act when the patient can't.
The federal regulation says that if a patient is incapacitated, their representative may file the election statement (42 CFR 418.24). A representative is someone with authority under state law to authorize or stop medical care for an incapacitated patient. That includes electing or revoking hospice (42 CFR 418.3).
The definition notes that this can include a legal guardian.
So Medicare hands the question back to state law. Who has that authority depends on what you signed.
In Washington: the order the law follows
Washington gives doctors a list of people who can consent for a patient without capacity, in strict order (RCW 7.70.065):
- A court-appointed guardian, if there is one.
- The agent in a durable power of attorney that covers health care.
- A spouse or state registered domestic partner.
- Adult children.
- Parents.
- Adult brothers and sisters.
- Then adult grandchildren, nieces and nephews, and aunts and uncles who are familiar with the patient.
- Last, a close friend who meets set conditions and signs a sworn declaration.
Two details in that statute matter at the end of life. If people in the same class (say, three adult children) don't all agree, someone lower on the list can't step in to decide instead.
And whoever decides must first ask what the patient would have wanted, in good faith. Only if they can't tell may they decide on the patient's best interests.
That second rule is why written wishes matter so much. They turn a guess into an answer. Our post on the next-of-kin order shows how the list plays out in real families.
Why naming someone matters
Here is a typical case, a composite. Helen, 79, has advanced heart failure and can no longer follow a conversation. Her husband died years ago, and her two sons disagree about stopping hospital treatment.
Because Helen named her niece Carol as her medical power of attorney, Carol is second on the list, ahead of both sons. Carol has Helen's written wishes and a POLST form from her doctor. She signs the election statement, and Helen comes home to her own bed and her cat.
Without that paper, the sons would be the deciders, and they would have to agree.
The documents that carry your wishes into hospice
Each document does a different job. Most people do best with all of them.
| Document | What it does | Who it helps |
|---|---|---|
| Medical power of attorney | Names who decides when you can't | Puts your choice near the top of the list |
| Health care directive (living will) | Says what treatment you'd want or refuse | Gives your agent and doctors instructions |
| POLST | A portable physician order about resuscitation and other treatment | Travels with you from one care setting to another |
| A care plan in your own words | Music, visitors, home or hospital, the dog on the bed | Tells the team who you are |
The Washington State Department of Health describes POLST as a portable physician order form. It covers resuscitation, other medical interventions, antibiotics and artificial feeding. Our post on POLST vs advance directive sorts out which is which.
For writing wishes that doctors can act on, see end-of-life wishes. And our post on health care power of attorney vs living will explains why you want both.
Can hospice be stopped once it starts?
Yes. Medicare's booklet says you always have the right to stop hospice care at any time. The provider will ask you to sign a form with the date your hospice care ends.
The booklet adds that nobody should ask you to sign a form stopping hospice if you didn't ask. If you were in Original Medicare, you continue there. If you're eligible, you can go back to hospice later.
When the patient can't decide, the representative under state law can revoke hospice, as the federal definition says (42 CFR 418.3). Your written wishes are what keep that choice faithful to you.
What if a court has to get involved?
Sometimes nobody holds clear authority, or the family can't agree. Then a court may appoint a guardian, which takes time.
Our posts on guardianship vs power of attorney and conservatorship vs power of attorney explain the difference. The short version: a power of attorney is something you sign while you can, and guardianship is something a court imposes when you can't.
If the people you'd name live far away, you can name a professional as your agent or as a backup. With Kinly, members choose who serves and in what order, and how it works explains the details.
A short checklist before hospice is ever needed
- Sign a medical power of attorney, and name a backup.
- Write a health care directive, and give copies to your agent and your doctor.
- Ask your doctor about POLST if you have a serious illness.
- Write down what comfort means to you: who is in the room, music, home or facility, the pets.
- Tell your agent where everything is kept.
Common questions
Who makes decisions in hospice if the patient can't speak?
The person with legal authority under state law, called the representative in Medicare's rules. In Washington, that's a guardian if one exists, then the agent in a health care power of attorney, then relatives in a set order. They must first decide in good faith what the patient would have wanted.
What does the Medicare hospice benefit pay for?
According to Medicare.gov, hospice care from a Medicare-approved provider costs you nothing. You may pay up to $5 per prescription for pain and symptom drugs and 5% for inpatient respite. Room and board at home or in a nursing home is not included.
How long can someone stay on hospice under Medicare?
Medicare provides two 90-day benefit periods, then an unlimited number of 60-day periods. After the first 6 months, a hospice doctor must recertify that the patient is still terminally ill, after a face-to-face visit.
Can a family member sign someone up for hospice?
Only if they hold authority under state law. Federal rules let a representative file the election statement for a patient who is incapacitated. In Washington, that follows the order in RCW 7.70.065, with a named health care agent ahead of family members.
Can you leave hospice and go back later?
Yes. Medicare's booklet says you can stop hospice at any time and, if eligible, return later. You sign a form giving the date hospice ends, and nobody should ask you to sign one you didn't request.
Sources
- Medicare.gov: Hospice care
- Medicare.gov: How hospice works
- Medicare.gov: Medicare Hospice Benefits booklet (PDF)
- 42 CFR 418.3: Definitions, including representative (Cornell LII)
- 42 CFR 418.24: Election of hospice care (Cornell LII)
- RCW 7.70.065: Persons authorized to provide informed consent for patients without capacity
- Washington State Department of Health: Portable Orders for Life-Sustaining Treatment (POLST)
This page is general information, not legal or financial advice. Laws vary by state.