The first days of hospice

A nurse completes the admission visit: assessment, consent forms, medication review, and a plan for the next several days. Expect questions about bowel habits, swallowing, pain, sleep, and what the patient can still do independently. These are not idle curiosity. They determine what gets prescribed.

You will receive the after-hours phone number. Write it on a piece of paper and put it on the refrigerator, in addition to saving it in your phone.

One of the first things a hospice does is reconcile the medication list. Some drugs are stopped because they were intended to prevent long-term problems that no longer apply, such as a cholesterol medication, or a blood thinner that now increases bleeding risk. Others are added for pain, breathlessness, nausea, anxiety, or secretions.

This can be unsettling. A family may see medications they have given for years disappear. Ask why each one is being stopped or continued, and ask for the updated list in writing.

Do not adjust medications on your own, and do not give medications from an old bottle without checking with the nurse.

A hospital bed, overbed table, bedside commode, walker, or oxygen may be delivered in the first days. Delivery drivers are not clinicians; they will place the equipment where you direct, so decide in advance where it should go.

If something does not fit, does not work, or is not needed, call the hospice. Equipment can be exchanged. Do not accept a bed in a hallway because you feel awkward asking the driver to wait.

Over the first week you will likely meet a nurse, an aide, and possibly a social worker. The aide will ask how the patient prefers to be bathed and what has worked before. The social worker will ask about family, money, and stress. Answer honestly, because that is what they are there for.

Ask each person their name and how to reach them. You will be dealing with several people, and it helps to write it down.

A simple notebook by the bed helps more than any app. Note the time and dose of as-needed medications, when the patient last ate or drank, bowel movements, and anything that seemed different. When you call the nurse, you will have facts rather than impressions.

• Pain: where, how intense, what made it better or worse.
• Breathing: at rest or with activity, any change in rate or effort.
• Appetite and fluid intake.
• Sleep and confusion, especially new confusion.
• Falls, near-falls, or new weakness.

Call the hospice nurse for uncontrolled pain, new or worsening breathlessness, agitation, vomiting that will not stop, a new wound, a fever, or any change that frightens you. There is no penalty for calling.

Call 911 instead if there has been a fall with injury, a head strike, chest pain in someone not already on a comfort plan for it, or an emergency unrelated to the terminal illness. Tell the hospice afterward.

Do not call 911 for an expected death. Call the hospice nurse first; they will come, confirm the death, and help with next steps.

Relief that help has arrived. Guilt about “putting them on hospice.” Anger at a physician who did not mention it sooner. A strange hope that the person will rally. All of these happen in the same week, sometimes in the same hour.

None of it means you made the wrong decision. Tell the social worker what you are feeling. It is a clinical conversation, not a confession.