The four levels of hospice care in plain words, and which one you are actually getting

Somebody at the hospice said the words continuous care, or you read them on a forum at one in the morning and thought, that is what we need. This page explains what is continuous care in hospice, the three other levels it sits beside, who decides, and why the word continuous does not mean what a tired family hopes it means.

Four names, one benefit

Medicare pays hospices by the day, and every day of hospice falls into one of four categories written into the federal rule: routine home care, continuous home care, inpatient respite care, and general inpatient care. The hospice bills one of the four for each day. Nothing about that changes the team, the phone line or the plan of care. It changes what is happening on that particular day, and where.

Most families never leave the first category. That is not a failure of the hospice or of you. It is what the benefit is for.

1. Routine home care

The rule's definition is short: a routine home care day is a day on which an individual who has elected to receive hospice care is at home and is not receiving continuous care. This is the visit schedule: the aide, the nurse, the social worker, the chaplain, the equipment, the supplies and the medicines for the terminal illness, with a hospice nurse and doctor on call 24 hours a day, 7 days a week. The week on the grid above is a routine home care week. Every blush square is the family.

2. Continuous home care

Here is the sentence to read twice. A continuous home care day is a day on which the person receives hospice care consisting predominantly of nursing care on a continuous basis at home, and the rule adds that continuous home care is only furnished during brief periods of crisis and only as necessary to maintain the terminally ill patient at home. The companion section defines the crisis: a period in which the individual requires continuous care to achieve palliation and management of acute medical symptoms. Hospice aide or homemaker services may be added on a continuous basis during that window, but the care must be predominantly nursing. To bill a day at that level, a minimum of 8 hours of care must be furnished.

So: a nurse, in the house, for hours at a stretch, because something has become acute enough that the hospice judges she cannot stay home without that nursing. The hospice decides when that window opens and when it closes. When it closes, the day goes back to routine home care and the visit schedule.

3. Inpatient respite care

Respite is for you, not for her symptoms. The rule says respite care is short-term inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual, that it may be provided only on an occasional basis, and that it may not be reimbursed for more than five consecutive days at a time. The booklet puts it in family language: if your usual caregiver needs rest, you can get inpatient respite care in a Medicare-approved facility, up to 5 days each time, arranged by the hospice. It means she goes to a hospice house, a hospital or a nursing facility for those days. How families use it is in the respite article.

4. General inpatient care

The fourth level is care in an inpatient facility for pain control or acute or chronic symptom management which cannot be managed in other settings. It is the hospice's judgment that home, even with continuous care, cannot hold the symptom. The booklet says that if the hospice decides you need inpatient care, your hospice provider will make the arrangements for your stay. Families sometimes hear this level as the promise breaking. It is worth knowing in advance that it exists, that it is short-term in intent, and that people come home from it.

What is continuous care in hospice, in one paragraph?

It is the crisis level. Nursing, mostly, in the home, for most of a day or more, because acute symptoms need it, for as long as they need it and no longer. It is not a schedule, not a night sitter, not a reward for the family that has held on longest, and not something you elect. You describe; the hospice assesses.

Who decides which level you are getting?

The hospice. The plan of care is built with you, since Medicare says you and your family will work with your hospice care team to set up your plan of care, but the level billed on any day is the hospice's determination against the federal definitions above. What you control is the information they have. If nights have become unmanageable, say the words: we cannot manage her breathing at night; we are not sleeping; here is what happened at 3am. That is what turns a routine week into an assessment.

Why continuous care is not the answer to exhaustion

Because the rule ties it to acute medical symptoms, not to the family's hours. A family that is simply out of people has three honest options: the respite level above, the hospice's own volunteers where they exist, and hired non-medical help paid privately. Medicare will not pay for the third; its home health page is explicit that it does not pay for 24-hour-a-day care at your home. Missouri treats that hired help as its own category, private duty or private pay, with no physician order needed and no state license issued for that type of company. If you go that way, tell the hospice who is in the house and what they do, so nobody blurs the line between presence and nursing.