I Want to Understand Hospice for Myself

What People Worry About

Some common fears about hospice come from misunderstandings. Ask about your specific worry instead of assuming what hospice will mean for you.

Does this mean I’m giving up? Hospice is a change in what the care is for, not a decision to stop being cared for.

Will I lose my doctor? Ask. Your own doctor may be able to stay involved as your attending clinician.

Does it mean I’m dying soon? Hospice eligibility is based on what doctors expect if the illness follows its usual course. It’s an estimate, not a countdown. Some people are on hospice for months. Some improve.

Can I change my mind? Yes. You can leave hospice, and you may be able to return later if you qualify.

Will I have to leave my home? Hospice often provides care where you live, including at home or in a facility, depending on the setting and the hospice.

Bring your own worry to the evaluation:

“What I’m most worried about is ______. What would actually happen with that?”

What Would Change for You

Ask before you decide:

• Which of my current treatments could continue?
• Which would stop or change?
• Who would manage my medications?
• Which doctor oversees my care, and can my own doctor stay involved?
• Who do I call before going to the hospital?

The answers vary, and this is the part people are surprised by.

Ask what care for the terminal illness needs to be arranged through hospice before you go to the hospital or use another provider.

If you have Medicare, ask for the list of medications, items, and services the hospice considers unrelated to your terminal illness. Those aren’t covered under the hospice benefit, so ask how they’ll be covered or paid for instead.

What You’d Actually Get

Ask:

• How often would someone visit?
• Who comes: nurse, aide, social worker, chaplain?
• What happens at night or on a weekend?
• When would someone come in person?
• What can I get help with that I’m struggling with now?

Hospice adds a team. It doesn’t put someone at your bedside all day and night.

If you need more help than that, say so during the evaluation and ask what’s actually available.

What It Costs

If you’re using Medicare and a Medicare-approved hospice, hospice services related to the terminal illness are generally covered under the hospice benefit.

Some costs can still remain. Room and board in a nursing home or assisted living is generally not covered by the Medicare hospice benefit, and there can be limited cost-sharing for some medications and inpatient respite care.

If you have Medicaid, private insurance, VA care, or no insurance, ask the hospice directly what applies to you.

“What would this cost me, and is there anything I’d have to pay for?”

If You Don’t Qualify Yet

“What’s keeping me from qualifying right now?”

Then ask what care would help in the meantime, whether palliative care would help, and what changes should prompt asking again.

Ask whether the reason is about your condition or about what that hospice can provide. If it’s about the agency, you can contact a different hospice yourself. You don’t need the first one’s permission.

Medicare hospice requires a doctor to certify that, if the illness follows its usual course, life expectancy is six months or less. Ask your own doctor whether they agree with the answer you got.

For help with symptoms and planning in the meantime, see I Need Help Understanding Palliative Care →

If no one will give you a clear answer, call 1-800-MEDICARE.

Not qualifying today doesn’t close the door.

If Someone Else Wants This Decided Differently

If you can make your own health care decisions, this one is yours.

Family may disagree. That doesn’t move the decision.

If it would help to have someone in the room, ask for a social worker or chaplain.

Ask for the evaluation. You can decide after, and you can change your mind after that.