Choosing care near the end of life: questions to ask

Goals might be being at home, being free of pain, seeing a grandchild’s wedding, or having family close. Naming them helps the care team suggest care that fits.

Questions to think about

• What would a good day look like now?
• What am I hoping for?
• What would I most like to avoid?

Fears might be pain, being a burden, being alone, or what will happen to family. Saying them out loud lets the team address them directly.

The “Serious illness & facing the end of life” guide has more on fear, meaning and dignity.

Strength can come from faith, family, friends, nature, humor or a sense of purpose. Knowing these helps the team and family build care around them.

For some people it is recognizing family, talking, eating, or being able to get out of bed. These answers often guide choices about treatment.

Some people want every treatment that might help. Others would rather focus on comfort and time at home. Both are valid. There is no right answer, only your answer.

• “What is happening with my illness now?”
• “What is likely to happen next?”
• “What changes should we watch for?”
• “Would you be surprised if (name) died in the next six months?”

Doctors can’t predict exactly. Asking “would you be surprised?” can make it easier for them to answer honestly.

• “What are all our options, including focusing on comfort?”
• “What would each option mean for daily life?”
• “What happens if we choose not to have this treatment?”
• “Could palliative care help now?”
• “Would I qualify for hospice?”

Medicare covers a one-time consultation with a hospice doctor to talk about options, even if you don’t choose hospice.

Before

• Ask how long the appointment is, and book more time if needed
• Bring someone to take notes or speak for you
• Tell the office if you need an interpreter
• Write down what worries you most and what you hope to learn

During and after

• Ask your most important questions first
• Repeat back what you heard to check you understood
• Review your notes and follow up on anything left unanswered

• GetPalliativeCare.org provider directory, for palliative care programs
• Medicare’s Care Compare (Medicare.gov/care-compare), to find and compare Medicare-approved hospices on quality
• The National Alliance for Care at Home’s “Find a Provider” tool

Medicare only pays for hospice from a Medicare-approved provider, so check this first.

Ask doctors, nurses, geriatric care managers or end-of-life doulas for recommendations. Friends and neighbors who have used local hospices can share what it was really like.

Some families want a hospice that shares their faith. For a Jewish hospice, the National Institute for Jewish Hospice can help. For a Catholic hospice, ask your parish or a regional Catholic health system.

• Asking for your Medicare number in exchange for “free” services
• Offering gifts or perks for signing up
• Pushing hospice when no doctor has said the illness is terminal
• Seeming too eager to sell its services

To report possible Medicare fraud, call 1-800-MEDICARE (1-800-633-4227).

• “What services do you provide?”
• “How do you keep the person comfortable?”
• “Can the person still get treatment that eases symptoms, even if it isn’t meant to cure?”
• “How often will the nurse and other team members visit?”

For context, hospice staff made an average of 3.9 in-person visits a week to people getting routine home care in 2023.

• “How are services provided after hours?”
• “How quickly does someone come if we call at night?”
• “How and where do you provide short-term inpatient care?”

Medicare-certified hospices must have a phone line answered 24 hours a day.

• “What support is there for the family and caregivers?”
• “What do your volunteers do?”
• “How do you arrange respite care?”
• “What grief support do you offer after a death?”

• “What roles do my own doctor and the hospice doctor play?”
• “Which nursing homes or long-term care facilities do you work with?”
• “How long does it usually take to start care once we ask?”

• “Do you take part in Medicare?”
• “Are you accredited by the Joint Commission or the Community Health Accreditation Program?” If so, ask to see proof
• Look up their quality scores on Medicare’s Care Compare

Research has found differences in family ratings between hospices, so it is worth checking scores where you can.

• “Do you have staff or interpreters who speak our language?”
• “How do you support our faith practices and rituals?”
• “Can our own faith leader visit and work with your chaplain?”
• “How do you include family in decisions?”

See the section “Making room for culture, faith and language” below.

Many people want to be at home. With home hospice, a nurse visits regularly and can be reached by phone at any hour, but family or other caregivers give most of the day-to-day care.

Questions to ask yourselves

• Can the home be set up safely, for example with a hospital bed?
• Who can stay overnight, and who can take turns?
• What help can friends, neighbors or paid aides give?
• What is our backup plan if caring at home becomes too much?

In one large U.S. study, families of people with home hospice were more likely to rate the care as excellent than families in other settings.

Hospice can be given in a nursing home or assisted living facility. The hospice adds its team on top of the facility’s staff.

Questions to ask the facility

• Which hospices do you work with?
• How do your staff and the hospice team share care?
• Can family stay late or overnight?

When symptoms need round-the-clock nursing, hospice can arrange a short inpatient stay, usually five days or less. Medicare covers this when the hospice arranges it.

People can move between levels of hospice care as needs change, and families can use respite care for up to five days at a time when they need a rest.

Choosing a facility after trying home care isn’t failing. It can be the most loving choice for everyone.

In some cultures, hard news is shared gently, or only with family, out of care for the person. You can tell the team your preference.

You might say

• “Please tell me everything.”
• “Please talk with my daughter first.”
• “I’d like the big picture, not the numbers.”

U.S. health care often focuses on the individual making their own choices. In many families, decisions are made together, or trusted to the doctor. All of these can be respected if you say what you want.

Choosing someone to speak for you is covered in “Planning ahead: wishes, advance directives & legacy.”

Tell the office ahead of time if you need an interpreter. Ideally the interpreter is a trained professional, not a family member, so relatives can be family rather than translators.

Hospice cares for spiritual needs as well as physical ones, and chaplains can contact your own faith leader. Tell the team early about prayers, rituals, dietary needs or customs around the time of death.

Things to share with the team

• Customs for the time of death and just after
• Faith leaders you want contacted
• Food, modesty or gender preferences for caregivers
• Prayers, readings or music you’d like

Some communities have good reason for distrust of the health care system, shaped by unequal treatment. It’s okay to say so, and to ask for time, a second opinion, or someone you trust to be present.

If a hospice isn’t meeting your needs, Medicare lets you change providers once during each benefit period.

You can stop hospice at any time. No one should ask you to sign forms to stop hospice if you didn’t ask, and you shouldn’t sign or date anything until the day you want care to end.

If the hospice says someone no longer qualifies and you disagree, you have the right to ask for a fast review by a Medicare quality improvement organization (BFCC-QIO). The hospice should give you a notice explaining how. If you don’t get one, ask for it.

If a doctor orders something and the hospice refuses it, you can file an appeal with Medicare. Your State Health Insurance Assistance Program (SHIP) can help.

• Talk with the hospice first, if you feel able to
• File a complaint with your state survey agency
• Contact your BFCC-QIO, or call 1-800-MEDICARE (1-800-633-4227)

• Ask for things in writing
• Bring someone to take notes
• Keep a list of diagnoses and care plans, and share it with each doctor
• Ask for your own copies of records and test results
• Repeat back what you heard

Ask friends, neighbors and acquaintances about their experiences with hospices near you. Honest stories can tell you things no brochure will.

Faith leaders can help families think through choices in light of their beliefs, and can work alongside the hospice chaplain.

SHIP counselors can help you understand Medicare coverage, Medigap and appeals. Call 1-800-MEDICARE to find your local SHIP.

Geriatric care managers and end-of-life doulas often know the hospices in your area and can recommend ones that fit your needs.

Medicare can answer questions about hospice coverage, help you find your state hospice organization and your SHIP, and take reports of possible fraud. TTY users can call 1-877-486-2048.

Rules and services differ from country to country. In many places a family doctor or GP is the starting point for palliative and end of life care. The same questions in this guide can help you compare options wherever you live.