What to expect during a stay at an inpatient hospice facility

Most people assume hospice means care at home. It often does. But NCI's summary lists hospice working in many places. Those include patients' homes, nursing homes, assisted living facilities, freestanding inpatient hospice facilities, hospitals, and even homeless shelters and prisons.

A freestanding inpatient hospice facility is a building given over entirely to this kind of care. Families arriving for the first time are often surprised. It feels very unlike a hospital ward.

NCI describes four levels of hospice care. Two of them involve a facility.

General inpatient care is used when symptoms reach crisis point. Bringing them under control then needs a hospital or facility setting. This is the reason behind most unplanned inpatient hospice stays. Think of pain that will not settle at home. Or breathlessness that frightens everyone. Or vomiting that will not stop, or agitation a house cannot handle. In those cases, round-the-clock skilled care changes what is possible.

Respite care has a different purpose. NCI describes it as temporary relief for the primary caregiver. It is typically five consecutive nights within a 60 to 90 day period. The person who is ill is admitted so the caregiver can sleep, or attend something, or simply stop for a moment.

Ask which of these two your stay falls under. It shapes how long the stay is expected to last.

The people involved do not change. NCI's interdisciplinary team includes a registered hospice nurse acting as case manager. It also includes a hospice attending physician, a medical director, a social worker, a chaplain, hospice aides and volunteers. More services are available too, such as physical and occupational therapy, pharmacy, speech therapy and nutrition.

In an inpatient setting these people are simply closer together. They are also available faster. At home a symptom might mean a phone call and a wait. Here it gets looked at in minutes.

The early part of a stay is usually focused and busy. Staff will want a clear account of what has been happening. They will ask what medicines have been given, and when. They will ask what has helped and what has not. Family knowledge really matters here. You have watched this person far more closely than anyone else.

Bring what a nurse cannot work out alone. That means the current medication list. It means contact details for the people who need to know. And it means any written wishes or advance directive.

Then things generally slow down. Once symptoms are being managed, an inpatient hospice day is quieter than a hospital day. There are fewer interruptions and fewer routine observations. The goal is comfort, not investigation.

Most families are told they can bring things in. Most wish they had brought more. Photographs. A blanket from home. Music the person likes. Things that make the room smell of somewhere familiar instead of somewhere institutional.

Ask about visiting rules early. That matters most for children and for anyone travelling a distance. Ask whether a relative can stay overnight. These arrangements vary between facilities. Knowing them removes a whole layer of worry.

• What exactly are we trying to control, and how will we know it is working?
• Who is coordinating this stay day to day?
• What is the plan if things settle — home, or somewhere else?
• Who do we call overnight, and who makes decisions when the usual doctor is off?

NCI notes that CMS requires every hospice to run an organized bereavement program, providing services for up to one year following the death of the patient. Services vary by programme. They typically include phone calls, cards, support groups and individual therapy.

Does a stay end in a death? That support does not stop at the facility door. Ask who will be in touch. Take the offer seriously, even if it is months before you want it.