What happens in the first 48 hours of hospice

The same day: a nurse comes out

The first visit is the long one — usually an hour or more, and it is not only clinical. Yes, the nurse checks vital signs, goes through the medication list and looks at how comfortable the person actually is. But she is also working out things nobody writes on a form: what the house is like, who is doing the caring, whether anybody has slept this week, and what is most likely to go wrong first.

Ask everything at this visit. There is no question too small, and the ones families apologise for asking — how will we know, what do we do at night, is this normal — are the ones we most want to answer.

The same day: medicine comes into the house

A small kit is delivered and it stays in the home: something for pain, something for breathlessness, something for nausea, something for agitation. Most of it is never used. That is not waste — that is the point.

The reason it matters is what it prevents. Without it, three in the morning means calling a doctor, waiting for a pharmacy to open, and watching someone be uncomfortable while you do. With it, three in the morning means you call our nurse, she tells you which one and how much, and you open a drawer. Families tell us this is the single thing that changed the most.

Within about a day: equipment arrives

A hospital bed if one is needed. Oxygen. A wheelchair, a commode, a bedside table — whatever the situation calls for. It is delivered, set up, and collected again afterwards, and it is covered.

One piece of honest advice: say yes to the bed earlier than feels necessary. Almost every family resists it, because a hospital bed in the front room makes something feel official. And almost every family says afterwards they wish they had accepted it sooner — it makes turning, sitting up and sleeping enormously easier for everyone, including the person doing the lifting.

Day two: the plan, and the number

By the second day there is a written plan of care: how often a nurse visits, when the aide comes, who else is on the team, and what to watch for. Our medical director reviews it, and it changes as the illness does rather than sitting in a folder.

You also get the number that reaches a nurse at any hour. Put it on the fridge, and put it in three phones — not just the phone of the person doing the most caring, because that person will eventually be asleep and someone else will need it. It is 435-635-1001, and it is answered day, night and weekend.

What else turns up in the first week

Hospice is a team, not a nurse. In the first days you will usually also hear from:

• A certified nursing assistant (CNA) for bathing and personal care — the hardest and most private work, and the fastest relief for a family carer.
• A social worker, who is not there to assess you. Benefits, paperwork, practical problems, and the family conversations nobody wants to start.
• A chaplain, of any faith or none, offered and never pushed.
• Volunteers, who can sit with someone for an afternoon so you can leave the house without worrying.

You can decline any of them, and change your mind later. Most families say yes to more of it than they expected to.

What actually changes for you

The clinical answer is symptom control and equipment. The real answer, the one families give when you ask them a month later, is that the pressure came off. Somebody else is now holding the plan. You stopped being the medical coordinator and went back to being a daughter, a husband, a son.

If you are reading this before any of it has started and you are still not sure it is time, that is the more useful question and it has its own page. If you would rather just ask a person, call 435-635-1001 — a nurse answers, and asking is not a decision.