What to expect in the first week of hospice

The first week, step by step

The order can vary, and a person coming home from the hospital may have several steps happen on the same day.

1. Step 1

   The referral and first phone call

   A doctor, a facility or the family calls the hospice. The hospice gathers medical records, checks insurance and asks the doctor for an order. You are told about any costs before care starts. For people at home, Beta aims to admit within 24 hours. People leaving the hospital are admitted on the day of discharge unless other arrangements have been requested.

2. Step 2

   The admission visit

   A hospice nurse comes to where the person lives. The nurse explains hospice, answers questions, reviews medicines, examines the person and asks what matters most to them. Plan on one to two hours. Have the medicine bottles, insurance cards and any advance directive or POLST form nearby.

3. Step 3

   Consents and the election statement

   If the person chooses hospice, they or their legal representative sign consent forms and the hospice election statement. See the next section for what it says.

4. Step 4

   Equipment delivery

   An equipment company delivers what the plan of care calls for, such as a hospital bed, oxygen, a bedside commode or a wheelchair. The driver sets it up and shows you how to use it. Decide ahead of time where a bed would go. In-stock equipment is delivered within two hours of the order.

5. Step 5

   Comfort medicines arrive

   Medicines for symptoms are delivered or picked up from a pharmacy. The nurse explains each one. See the section on comfort medicines below.

6. Step 6

   First team visits

   The nurse case manager returns to follow up. A social worker and, if you wish, a chaplain contact you. A hospice aide can be scheduled to help with bathing when that is part of the plan of care. The hospice doctor reviews the plan with the team.

7. Step 7

   The plan of care takes shape

   By the end of the week, the team has a written plan built around the person's goals: which symptoms to treat and how, which visits are planned, what equipment is in place and who to call. The plan changes as needs change.

What you sign, and what it means

The election statement is the form that starts the Medicare hospice benefit. It names the hospice you chose and your attending doctor, and gives the start date. By signing, you confirm you understand that hospice care focuses on comfort and not on curing the terminal illness, and that Medicare will pay for care related to that illness only through the hospice. Care for health problems that are not related to the terminal illness stays covered in the usual way.

You have the right to ask for a written list of any items, services or drugs the hospice believes are unrelated to the terminal illness and will not cover. Ask if this matters to you.

Signing does not lock you in. Choosing hospice is your decision. You can stop hospice at any time and return to regular Medicare coverage. You have the right to choose your hospice. In California, only licensed hospice staff may counsel you about electing hospice, so expect this conversation to be with a nurse or other clinician.

Ask for copies of everything you sign, and a copy of your rights as a patient. See patient rights.

Comfort medicines in general terms

Many hospices place a small set of medicines in the home early, before they are needed. Some call it a comfort kit. It usually holds small amounts of medicines for pain, shortness of breath, anxiety or restlessness, nausea, and noisy breathing from secretions. What goes in it depends on the person and the doctor's orders. The prescribing clinician selects the medicines for each person, the pharmacy confirms supply and delivery, and the nurse explains storage, use and when to call the team.

The point is speed. If a symptom starts at night, you call the hospice nurse, and the nurse can tell you exactly what to give from what is already in the house. Do not use these medicines until a nurse tells you to. Store them as directed, away from children and visitors.

The nurse will also review the person's regular medicines. Some continue. Some that no longer help may be stopped, with the doctor's agreement and yours.

Who to call at night

A hospice nurse answers the phone 24 hours a day, 7 days a week, and can visit when needed. On the first visit you are given the number. Put it on the refrigerator and in every caregiver's phone.

Call for new or worse pain, trouble breathing, a fall, confusion or agitation, a question about a medicine, or a change that worries you. You are not bothering anyone. Calling early is what the nurse wants.

Call the hospice before calling 911 or going to the emergency room, unless there is an emergency that has nothing to do with the illness, such as a fire or an injury that needs urgent treatment. Most problems can be handled at home, and an unplanned hospital stay may not be covered by the hospice benefit.

How to get ready

• Gather medicine bottles, insurance cards, and any advance directive, POLST or power of attorney papers
• Choose one family member to be the main contact for the hospice
• Clear a path and a space for equipment
• Write down your questions as they come up and keep the list by the phone
• Tell the nurse what a good day looks like for the person, and what they fear most
• Tell the nurse about faith, culture or family customs the team should respect

Common questions