Before the hospice team comes to the house for the first time, someone in the family usually signs a form called the election statement. It is the paper that says you are choosing hospice care for the illness and giving up certain other treatments for it. Most families read the first page and sign. This piece asks you to read the page about leaving.
Local option: New Plan Care gives families in the St. Louis area in-home help so a parent can stay home: companionship, help with bathing and dressing, meals, and overnight care. Call (314) 405-0887.
Under the Medicare hospice benefit, the person receiving hospice, or whoever has legal authority to act for them, can revoke the election at any time. Nobody has to give a reason, and nobody has to wait for a particular day. Revoking ends the hospice benefit for that period of care. The person can return to ordinary Medicare coverage for the illness, and a later election may be possible if they still qualify. The question to settle is not whether you are allowed to leave. It is what changes on the day you do.
Ask what stops on the day you revoke
Ask the hospice agency to tell you, in writing, what ends when the election ends. Ask specifically about the visit schedule, the aide visits, the chaplain and social worker visits, the equipment the agency supplied, and the medicines the agency has been providing for the terminal illness. Ask who holds the equipment, who comes to pick it up, and whether any supplies are meant to stay in the house. Ask who you call that evening if something changes. Then ask how long it takes for ordinary coverage to start again, and whether a doctor has to write new orders before it does. The answers differ by agency and by household, so get them in writing before you need them.
Learn the benefit periods before the third one arrives
Medicare counts hospice care in benefit periods. The first period is 90 days, the second is 90 days, and after that the periods run 60 days each for as long as the patient stays on hospice. Each period has to be supported by a doctor's certification, and at the start of the third period and each one after, the doctor has to recertify that the patient still meets the eligibility rules. Ask the team how they will let you know a recertification is coming, who will talk with you about it, and what happens if the patient's condition changes in a way that affects eligibility.
Ask the same questions from the other side. A hospice agency can discharge a patient when the team decides the patient no longer meets the criteria, or for cause, but the rules require written notice first. Ask what that notice looks like, who receives it, how the family can ask for review, and what happens to visits between the notice and the discharge date.
Put the ways out on one page
Before you sign, or within the first week, write down three things: who in the family can make the decision to revoke, where the election statement is kept, and who the agency should call first if you are unsure. If more than one person could make that call, decide now who it is. A decision to revoke is easier to make calmly on a weekday than in the middle of a night, when the person in the bed needs something and the people caring for them are worn out.
The election is a choice, and it can be taken back. Knowing that in writing, with the names and phone numbers beside it, is what lets you hold the choice steadily. The Sources page lists the Medicare materials this piece relies on, and Start Here walks through the rest of the early paperwork.