What to ask the hospice nurse tonight: the changes families notice

Mom stopped eating on hospice. Is that normal? You are asking a search engine because it is two in the morning and you did not want to bother the nurse. This page will not tell you what it means, because nobody on this site is a clinician and the person who can answer is a phone call away. What it does is name the changes families notice, quote the public source on each, and say the same thing every time: call the line.

First, the line exists for this hour

Medicare's hospice booklet says a hospice nurse and doctor are on call 24 hours a day, 7 days a week to give you and your family support and care when you need it. CaringInfo, the public program of the national hospice organization, says Medicare certified hospices must have a 24/7 telephone line to call when crises or questions arise. Questions. Not only crises. The nurse would rather take a 2am call about appetite than a 6am call about something appetite was the first sign of.

The National Institute on Aging's page on care and comfort at the end of life opens its practical advice with one instruction, and this page borrows it as its only rule: always remember to check with the person's health care team to make sure these suggestions are appropriate for the situation.

Mom stopped eating on hospice. Is that normal?

Here is what the NIA says, in its own words, and then what to do with it. The NIA writes that nausea, vomiting, constipation, and loss of appetite are common issues at the end of life, that swallowing may also be a problem, and that because the causes and treatments vary, you should talk to a doctor or nurse about what you are seeing. On the same page it says that if the person loses their appetite you can gently offer favorite foods in small amounts, help with feeding if they want to eat but are too weak, and then, plainly: don't force a dying person to eat. It describes losing one's appetite as a common and normal part of dying and says going without food and water is generally not painful.

That is the NIA's sentence, not this site's. Whether it describes your mother tonight is exactly the question for the nurse, because the same page says the causes vary. So: note when she last ate and drank, what she refused, whether she is swallowing, and call. Do not decide on your own to push fluids, and do not decide on your own to stop offering them. Ask.

The other changes families notice

Each item below has the same ending. Notice, write it down with the time, call the hospice line.

Sleeping more, or hard to rouse

The NIA says it is common for people nearing the end of life to feel tired and have little or no energy, and suggests keeping things simple: a bedside commode instead of the walk to the bathroom, a shower stool, a sponge bath in bed. What to tell the nurse: how many hours she slept, whether she woke for anything, whether she knew you.

Breathing that sounds different

The NIA says shortness of breath is a common experience at the end of life, and that some people very near death have noisy breathing that in most cases does not upset the dying person, though it may be alarming to family. It mentions raising the head of the bed, a window, a fan, and turning the person to rest on one side as things a caregiver might try, and says prescription medicine may also help. Those are the nurse's to confirm for her. What to tell the nurse: what it sounds like, whether it changed with position, whether she seems distressed by it.

Restlessness, picking at the sheets, seeing people who are not there

The NIA notes that some people may experience mental confusion and unusual behavior, and that a dying person may appear to see or talk to someone who is not there; it advises against interrupting or correcting them. It also says increased agitation can be a clue to pain. What to tell the nurse: when it started, whether she is calmer when someone is with her, whether she is pulling at anything.

Pain you cannot be sure of

The NIA says knowing how much pain someone is in can be difficult and tells families to watch for clues, such as trouble sleeping, showing increased agitation, or crying, and to tell the health care professionals if the pain is not controlled, because medicines can be increased or changed. The dose is the nurse's. The noticing is yours. What to tell the nurse: what you see, when, and what was given at what time, from the log.

Skin: cool hands, dark patches, sore spots

The NIA says that closer to death hands, arms, feet, or legs may be cool to the touch and some parts of the body may become darker or blueish, and separately that pressure on one spot can lead to bed sores, which first show as discolored or darker skin on the heels, hips, lower back and back of the head. What to tell the nurse: where, what color, and when you last turned her.

Dry mouth, cracked lips

The one item you can act on before the call, per the NIA: keep their lips moist with lip balm and their mouth clean with a soft, damp cloth, with ice chips if she is conscious. Then still mention it to the nurse, because a dry mouth is also information.

Should I call the hospice line at 2am?

Yes. That is what the booklet's sentence means. If you are not sure the change is worth a call, that uncertainty is itself worth a call. If the nurse decides to come out, that is her judgment about the level of care; the federal rule describes periods of crisis in which nursing can be provided continuously, and the nurse is the person who recognizes one.

What a non-medical caregiver can and cannot do with this list

A hired non-medical caregiver sitting with her can do the noticing and the writing down, the lip balm, the turning the nurse has shown, and the phone call to you and then to the line. They cannot interpret any item above, cannot change anything about medicines, and are not a substitute for the hospice. Missouri classes that work as private duty or private pay care, separate from hospice and from home health. If you have someone in the chair, give them this page and the on-call number.