Hospices that take Medicare all follow the same federal rules, but they don't all work the same way day to day. The way to find out is to ask, and you can call more than one.
Medicare publishes its own checklist of questions to ask when choosing a hospice, and many of the questions below come from it. We've added what the federal rules say where it helps you judge the answer. Pick the questions that matter most to the patient and your family; you don't need to ask them all.
Help after hours
Problems don't keep office hours, so this is often the first thing families ask about.
- Does someone answer at night, on weekends and on holidays? Is it a nurse?
- When we call with an urgent need, how long does it usually take for someone to respond?
- Will someone come to the house at night if needed?
Medicare says a hospice nurse and doctor are on call 24 hours a day, 7 days a week. Federal rules also require nursing, doctor services and medications to be routinely available around the clock. Asking about response times tells you how that works in practice.
Who visits, and how often
- Will the patient have the same nurse most of the time?
- Which other team members will we see (aide, social worker, chaplain, volunteer), and how often?
- How many patients does each nurse care for?
- How will the team keep us informed, and how will the family take part in decisions?
Federal rules say a hospice registered nurse must do an initial assessment within 48 hours of the patient choosing hospice, unless the patient or doctor asks for it sooner. The written plan of care has to spell out what services the patient gets and how often, and the team has to review it at least every 15 days. You can ask to see the visit schedule in the plan.
Levels of care, and where they happen
Every Medicare-certified hospice has to offer four levels of care: routine home care, continuous home care during a crisis, general inpatient care, and inpatient respite care.
- If symptoms get out of control at home, what happens? Can you provide nursing care in the home for a stretch of hours?
- If the patient needs inpatient care, where would they go: your own inpatient unit, a hospital, or a nursing facility?
- Where is respite care given, if the family needs a break?
- Do you care for patients in nursing homes or assisted living, if that's where the patient lives?
It's worth asking how a trip to the hospital would be handled. Medicare says the hospice must arrange a hospital stay for the terminal illness, and if it doesn't, the patient might have to pay the full cost.
Care Compare shows whether a hospice has provided any level of care beyond routine home care in recent years, and where it has cared for patients. Our guide to reading hospice ratings explains those figures.
Medications and equipment
- Will you provide a hospital bed and other equipment the patient might need? How soon can it arrive?
- Can the patient keep taking their current medications?
- Which drugs will you cover, and which won't you cover because you consider them unrelated to the terminal illness?
- How do you handle pain medicines at home, and what happens to leftover ones?
Under Medicare, the hospice provides the drugs, supplies and equipment related to the terminal illness. The patient may pay up to $5 per prescription for outpatient drugs for pain and symptoms. You can ask for a written list of what the hospice considers unrelated, with its reasons. When controlled drugs (like strong pain medicines) are first ordered, the hospice must give the family its written policy on using and disposing of them and talk it through.
Who to call, and how to raise a concern
- Is there one number we call for everything? Who picks up?
- Can the patient keep their regular doctor? How will you work with them?
- If we have a concern about the care, who do we talk to?
The patient can choose their own doctor, nurse practitioner or physician assistant as the attending medical professional. Patients also have the right to voice complaints about their care without being treated differently for it. If a concern isn't resolved, Medicare says you can contact your state's survey agency or a Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO); 1-800-MEDICARE can help you find the right one.
Staff, training and support for caregivers
- How long has the hospice been serving patients?
- Will you train us to care for the patient at home, for example what to do if they have trouble breathing or become restless?
- What do your volunteers do, and are they trained?
- Can we speak with other families who have used your hospice?
- What are our options if we can't keep caring for the patient at home?
Respite care lets the patient stay in a facility for up to 5 days at a time so the caregiver can rest. Medicare covers it occasionally, with a copay of 5% of the approved amount.
Grief support for the family
- What grief support do you offer after the death, and for how long?
- Is it for the whole family, or only the main caregiver?
Federal rules require hospices to make bereavement services available to the family for up to a year after the patient dies, under a written bereavement plan that sets out what's offered and how often.
How switching hospices works
It helps to know this before you choose. Under Medicare, a patient can change to a different hospice once in each benefit period. The patient or their representative signs a statement naming the old and new hospice and the date of the change, and files it with both. Changing hospices isn't the same as leaving hospice, so the benefit continues.
The patient can also stop hospice at any time and return later if they still qualify.
Frequently asked questions
Can we talk to more than one hospice?
Yes. Medicare built Care Compare so families can compare hospices, and its checklist is meant for exactly these conversations. A doctor or your state hospice organization can also suggest hospices to call.
Do we have to use the hospice the hospital or doctor suggests?
The patient, or their representative, chooses the hospice and signs the election statement with it. If it doesn't work out, the patient can switch once in each benefit period.
What if care doesn't match what the hospice promised?
Raise it with the hospice first. If that doesn't fix it, you can contact your state survey agency or the BFCC-QIO, and the patient can change hospices.
Sources
- Medicare Care Compare: Suggested questions to ask when choosing a hospice
- Medicare: Hospice care coverage
- Medicare: Medicare Hospice Benefits (CMS Product No. 02154)
- Medicare Care Compare: Hospice levels of care
- eCFR: 42 CFR Part 418, Hospice care