Most families assume hospice is one service at one price. It is not. Medicare describes hospice care in levels, and each level is paid differently. The level a visit falls under decides what the hospice must provide that day, who provides it, and how the hospice counts the time. You will not need to know every detail tonight. You do need to know the levels before a hard night makes you learn them in a hurry.
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.
The four levels, in plain terms
The federal hospice rules recognize four levels of care: routine home care, continuous home care, inpatient respite care, and general inpatient care. Routine home care is the ordinary visit schedule and the one most families live in for most of the stay. Continuous home care is the level used during a period of crisis, when the patient needs a nurse or aide present for long stretches to manage symptoms at home. Respite care is a short stay in a facility so the family can rest. General inpatient care is a stay for symptoms that cannot be managed at home. The Medicare hospice pages listed on Sources give the current wording. Read them with the hospice's own paperwork in hand.
What continuous care actually requires
Continuous home care is the level that most often surprises a family at night. Under the federal rule, it is provided during a crisis, and it requires that the hospice furnish at least eight hours of care within a 24-hour day, with the care mostly provided by a nurse or a hospice aide. It is billed by the hour, not by the day. That is the whole reason it exists as a separate level. It is also the reason the hospice keeps a record of the hours, and you should ask to see that record, not just the summary line on the statement.
Questions to ask the hospice before any crisis
Ask the hospice coordinator, in a calm call on an ordinary afternoon, these questions and write the answers in the front of the binder:
Which level is the household on right now, and what would change it? Ask for the plain statement of what the hospice calls a crisis, and whether a change in condition that is new to you counts. A question about a change in condition is for the hospice nurse to answer. This page cannot answer it for you.
If continuous care is ordered, who comes, how many hours in a day, and on which shifts? Ask whether the hours are written down each time and how you get a copy.
When does the level step back down? Ask who decides, and whether the nurse will tell you in writing when it changes. A level that stays higher than it needs to is a bill problem, and it is also a sign the plan should be reviewed.
If you hire private help during a crisis, does the hospice count it toward its hours, or is it entirely separate? Ask for that in writing before you hire anyone. A non-medical caregiver you hire is your own arrangement, and the hospice will not treat those hours as its own.
Where the family's own hours fit
Hospice pays for the care it provides under the level it has ordered. The hours you cover yourself, with the visit schedule, a sitter, or a hired helper, are not part of that count. Keep a simple log of your own hours next to the hospice's record. When the two do not match, the mismatch is worth a phone call, and the call is cheaper and calmer than a dispute at the end of the month.
If you are not sure which hours belong to whom, that uncertainty is itself the thing to bring to the hospice team. The local organizations listed on Local Help for Hospice Families can also help you sort out what is covered and what is not, and the How We Write page explains what this site will and will not tell you about money.
Do the checking now
Nobody plans to need continuous care. A crisis arrives at two in the morning with a phone in one hand and a dying parent in the other, and the questions you did not ask in daylight are the ones you cannot ask then. Name the current level, learn what the hospice calls a crisis, ask how the hours are recorded, and find out who pays for the hours you add yourself. Write the answers down. The night will still be hard. It will be less of a surprise.