How care begins

You call and describe the situation. Expect questions about the diagnosis, recent hospitalizations, what the person can still do independently, who the primary physician is, and what insurance they have. These questions are not gatekeeping; they determine whether hospice is the right service and whether we can reach you.

You should also be able to ask questions. A useful opening: “Before we go further, can you tell me who answers the phone at night, and how often a nurse would visit?”

Nothing is signed on this call. There is no cost to it, and no obligation afterward.

If hospice may be appropriate, a nurse or clinician arranges to see the patient, at home, in the hospital, or in a facility. The evaluation involves reviewing records and medications, observing the patient, and talking with the family about goals and what the person wants.

The hospice then contacts the physician for orders and certification. If the patient is in a hospital, this coordination happens with the discharge planner. Timing depends on how quickly records and orders come back; no hospice can honestly guarantee a specific number of hours, though most try to move quickly.

After the evaluation, you can still say no.

If everyone agrees to proceed, a nurse completes the admission visit. That includes signing consent forms, electing the Medicare hospice benefit if applicable, and documenting the patient’s preferences, including whether they want CPR, hospitalization, or ventilation.

You will be asked to identify a primary contact and a backup. You will also be given the after-hours number, which is the single most important piece of paper in the house.

Electing hospice means agreeing to forgo curative treatment for the terminal illness. It does not mean giving up all treatment, and it can be revoked at any time.

In the first day or two, expect a medication review, an equipment delivery, and a plan that specifies who visits and when. The nurse will likely call the primary physician and may adjust medications, stopping some that are no longer helping and starting others for comfort.

Do not be alarmed if the first two days feel busy and a little disorganized. Establishing a plan takes a few visits. If it still feels disorganized after a week, say so.

After the first week, care usually finds a routine: a nurse visit once or twice a week, aide visits for bathing, occasional social work or chaplain contact, and a phone number for everything else. That rhythm changes as the illness changes.

The team meets regularly to review the plan. You are part of that review whether or not you are in the room. If the plan is not working, tell the nurse.

Four questions, asked before admission, tell you most of what you need to know: who answers the phone at night, how often a nurse will visit, which services the hospice provides directly, and what it arranges with another organization.

You are also entitled to a written plan you can read, a clear explanation of what Medicare, Medi-Cal, or your insurance will and will not cover, and the name of the person to call with a question about the bill.

Ask for all of it on the admission visit. A provider that answers those questions plainly is easier to work with in the weeks that follow.