How to Choose a Hospice: Your Rights and the Questions to Ask
Your right to choose any Medicare-approved hospice, key questions on after-hours care, visits and inpatient options, and how to switch.
You get to choose the hospice
When a doctor recommends hospice, families are often handed a single name, sometimes during a stressful hospital discharge. It helps to know that the choice belongs to the patient, or to a legal representative if the patient can no longer decide. Under federal rules, the person electing hospice signs an election statement that names the particular hospice they have chosen and the attending doctor they want involved in their care (42 CFR 418.24). Medicare covers hospice care only when it comes from a Medicare-approved hospice, so that is the one firm requirement (Medicare.gov: Hospice care).
A referral from a hospital, nursing home, or doctor is a starting point, not an obligation. If the patient is in a Medicare Advantage plan, Medicare's own hospice booklet says the plan must help locate a Medicare-approved hospice in the area, and once hospice starts, Original Medicare pays for care related to the terminal illness (Medicare Hospice Benefits booklet).
Where to start looking
Medicare suggests three places to begin: talk with the patient's doctor, use Medicare Care Compare to find and compare Medicare-approved hospices in your area, and contact your state hospice organization (1-800-MEDICARE can give you the number). This directory is built from the same Care Compare data, including the family survey results and quality measures described in our other guides. Scores are a helpful filter, but a conversation with the hospice itself will tell you things the numbers cannot.
Questions to ask before you decide
Most hospices will talk with families by phone before admission, and Medicare covers a one-time consultation with a hospice medical director or hospice doctor to talk about care options, even if you decide not to use hospice (Medicare Hospice Benefits booklet). Useful questions include:
- What happens after hours? Federal rules require nursing services, physician services, and drugs to be routinely available 24 hours a day, 7 days a week (42 CFR 418.100). Ask how that works in practice: who answers the phone at night, whether a nurse can come to the home, and roughly how long a visit usually takes to arrive.
- How quickly can care start? A hospice registered nurse must complete an initial assessment within 48 hours after hospice is elected, and the full team must finish a comprehensive assessment within 5 days (42 CFR 418.54). Ask whether the hospice can admit sooner if the situation is urgent.
- How often will staff visit? Visit frequency is set in the patient's individual plan of care, which the team must review at least every 15 days (42 CFR 418.56). Ask how often nurses, aides, social workers, and chaplains typically visit, and how visits increase as needs change.
- Which levels of care do you provide, and where? Medicare recognizes routine home care, continuous home care during a crisis, general inpatient care, and inpatient respite care. Ask whether the hospice has its own inpatient unit or contracts with hospitals or nursing facilities, and which ones.
- What support do family caregivers get? Ask about training for giving medicines and managing symptoms, volunteer support, respite, and bereavement services, which hospices must make available to the family for up to a year after the death (42 CFR 418.64).
- Can you serve us where the patient lives? If the patient lives in a nursing home or assisted living community, confirm the hospice works with that facility.
- What will not be covered? The hospice must tell you about your right to a written list of items, services, and drugs it considers unrelated to the terminal illness, along with the reasons (42 CFR 418.24).
How to read the numbers alongside the conversation
On Care Compare, look first at the family caregiver survey results, which reflect how families rated communication, timely help, respect, and emotional support. Then look at the quality measures, such as whether the hospice visited patients in the last days of life. Keep in mind that small hospices may not have enough completed surveys to show scores, and a missing score is not a sign of poor care. When numbers are close, give more weight to how the hospice answers your questions and whether it listens to what matters to the patient.
If it isn't working: switching hospices
Families sometimes find that a hospice is not meeting their needs. Medicare allows a patient to change hospice providers once in each benefit period (42 CFR 418.30). Changing hospices is not the same as leaving hospice: the patient files a statement with both the current and the new hospice giving the names of each and the date the change takes effect, and hospice coverage continues without a break.
A patient can also stop hospice care at any time, for example to pursue treatment aimed at a cure, and can return later if still eligible. Medicare's booklet notes that no one should ask you to sign forms to stop hospice care unless you asked to, and you should not sign or date such forms until the date you actually want care to end (Medicare Hospice Benefits booklet).
Raising concerns
If something goes wrong, start by telling the hospice; patients have the right to voice grievances without fear of reprisal (42 CFR 418.52). If the response is not satisfactory, you can contact your Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO) about quality of care, or your state survey agency, which investigates complaints about hospices. If the hospice says the patient no longer qualifies and you disagree, you can ask the BFCC-QIO for a fast appeal (Medicare fast appeals).
This guide is general information, not medical or legal advice. Rules can change; confirm details with Medicare or the hospice.