Hospice in assisted living in California: the hospice waiver, and what it means for your family

When someone in assisted living starts to decline, the first fear is often having to move: out of the room they know, away from the staff who know them, at the hardest possible time. In California, a resident can usually stay. The state lets assisted living communities keep residents on hospice under a hospice care waiver. This note explains what the waiver is, what has to be in place, and what it means for a family, using the state’s own rules.

The short answer

• In California, assisted living communities are licensed as Residential Care Facilities for the Elderly, often called RCFEs.
• An RCFE can keep a resident who is receiving hospice care if it holds a hospice care waiver from the California Department of Social Services.¹
• The resident chooses the hospice, which must be licensed by the state and certified by Medicare.²
• A written hospice care plan, agreed to before care starts, sets out who does what.²
• Medicare pays for the hospice care. The family keeps paying the community’s monthly fee, because hospice doesn’t cover room and board.³

What the hospice care waiver is

A hospice care waiver is permission from the state for an RCFE to accept or keep residents who are terminally ill and receiving care from a hospice.¹ The community applies in writing and tells the state the most terminally ill residents it wants to care for at one time. It also commits to follow the hospice care plans and to sign an agreement with the hospice about each resident’s care.¹

The state approves a waiver only for a community in good standing with the rules for RCFEs, and only if the community can show it can meet the care and supervision needs of these residents, with more staff if a care plan calls for it.¹ The state has 30 days to answer a complete request.¹

Ask the administrator whether the community has one. The waiver belongs to the community, not to the resident, and it can cover current residents and future ones.¹

What has to happen for a resident to stay

The rules for each resident are specific.²

• The resident asks to stay. The resident, or the person who makes health care decisions for them, signs a written request to remain in the community while on hospice.¹
• The resident chooses the hospice. The resident contracts directly with a hospice that is licensed by the state and certified by Medicare. The community doesn’t choose it.²
• The state is told. The community notifies the state in writing within five working days when hospice care begins.¹
• The plan is agreed first. A written hospice care plan is agreed to before hospice services begin, and then followed.²
• Others stay safe. Keeping the resident can’t put other residents’ health, safety or rights at risk. A roommate signs a statement agreeing to give the hospice team and the resident’s family access to the shared room.²

What’s in the hospice care plan

The hospice writes the plan, and the community and the resident or their representative agree to it.² By state rule it includes:²

• How to reach the hospice and the resident’s doctor, with a 24-hour emergency number
• What the hospice provides in the community, and how often
• Who the main contacts are, at the hospice and on the community’s staff
• What the community is responsible for, including storing medicines, supplies and equipment
• Which licensed hospice professional oversees controlled medicines
• What family, friends and clergy will do
• What training the community’s staff needs, and who will give it

The plan can’t ask the community’s caregivers to do anything only a doctor or a licensed professional can do.² The hospice trains the staff on the resident’s needs before care begins, and the community keeps a record of that training.²

Who does what, day to day

The community keeps providing what it always has: meals, help with daily living, supervision and a familiar face in the hallway. The hospice team adds what hospice provides everywhere: the nurse who manages pain and symptoms, the aide for bathing, the social worker and chaplain, medicines for comfort, equipment like a hospital bed, and a nurse available any hour.³

When it works, the resident is cared for by people who already know them, with a hospice team that knows end-of-life care. The two teams talk often, and the family has one plan instead of two.

Questions to ask the community

• Do you have a hospice care waiver, and how many residents on hospice can you care for at one time?
• Who on your staff will be the main contact for the hospice team?
• How will medicines for pain and symptoms be stored and given?
• What training has your staff had, and what will the hospice add?
• What happens if my mother needs more help at night?

What it costs

Medicare pays for hospice care in full for someone who qualifies, wherever they live.³ Hospice doesn’t cover room and board, so the community’s monthly fee continues as before.³ Drugs for pain and symptoms are covered when they’re part of the plan of care, and the hospice provides the equipment and supplies the plan calls for.³

Ask the administrator whether anything about the community’s fees changes when hospice starts, so there are no surprises.

If the plan stops working

The state requires the community to report any break in hospice services, other than a death, and anything that threatens safety.² If a resident’s needs can no longer be met in the community, the state can require a move.² Planning well together makes that less likely, and a good hospice team raises concerns early, while there’s still time to adjust the plan.