Sometime after the first week, most families realize that the papers they gathered for the hospice start have no one keeping them current. At 2am, when someone unfamiliar is standing in the room, a page from weeks ago may be the only one available. A binder works only when someone owns it.
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.
What belongs in the binder
Keep a copy of the election statement, the current plan of care, the advance directive if one exists, the state portable medical order form that your parent's care team has completed, insurance cards, and a single page with the hospice's 24-hour number. Keep the current medication list too, because the nurse and the pharmacist will ask for it. Keep the binder where a visitor can find it without searching.
Put a short index on the front. Anyone who opens the binder should be able to find each paper in under a minute.
Name the owner
Decide who updates the binder. Usually that is one person, and a second person knows where it is kept. The owner replaces a page when the plan changes, when a new plan of care arrives, when a form is signed, or when a phone number changes. Old pages move to a separate folder, so the front of the binder shows only what is current.
Ask the hospice what it will send you and when. Some pages arrive by mail and some are signed at the bedside. Ask the nurse to tell you when a new document has been signed so that you can file it the same day.
Check the paper against the room
Once a month, or whenever the plan changes, read the binder against what is happening in the room. If the plan describes one arrangement and the room is set up another way, call the hospice and ask which is correct. Do not wait for an emergency to discover the mismatch.
The state form and the advance directive must match what your parent has actually chosen, and only the people authorized to sign them should change them. If you are unsure what the state form requires, the Local Help for Hospice Families page lists places in the St. Louis area to ask.