Good Questions to Ask Hospice About Your Loved One
Questions for the hospice team caring for someone in your family: what to expect, how symptoms are managed, what you can safely do yourselves, who to call at night, and what happens at the end and afterwards.
The questions
Open any question for the note
What is happening now, and what should we expect over the next few days or weeks?
Why ask it
Hospice staff will usually talk in ranges rather than dates, and that is honest rather than evasive. Ask them to describe what would count as a change worth calling about, so you are watching for something specific instead of everything.
Who is on the care team, and who do we call at two in the morning?
Why ask it
Most hospices run a 24-hour line staffed by a nurse who may not be the one who visits you. Write the number down and put it where anyone in the house can find it, along with the name of the case manager who coordinates the rest.
If something changes suddenly, how quickly can a nurse get here?
Why ask it
The answer sets your expectations for the hardest hours. If a visit could take an hour or more, ask what they want you to do in the meantime, because there is usually a plan for the gap.
How will we know if they are in pain when they can no longer tell us?
Why ask it
Ask for the specific signs staff watch for: facial tension, guarding part of the body, restlessness, changes in breathing. Learning the same signs lets you report what you see rather than guessing, which speeds up a dose change.
What medicines are they taking, who gives them, and what is each one for?
Why ask it
Families are often asked to give medicines themselves, sometimes several at different intervals. Ask for it written out as a schedule, including which ones are given only as needed and what the sign is that one is needed.
If a dose is not holding, how do we get it changed?
Why ask it
There is normally a defined route: call the nurse, who contacts the prescriber. Knowing it in advance saves an hour at the point when an hour matters, and it tells you whether you are expected to wait for a scheduled visit.
What physical changes usually come in the last days?
Why ask it
Breathing that changes rhythm, cooling hands, less response to voice and mottled skin are frightening if nobody has named them first. Hearing the list in advance means you are less likely to call an ambulance for something expected.
Should we keep offering food and water, and what if they stop taking them?
Why ask it
Appetite and thirst fall away as part of the process, and families often read that as giving up or as their own failure. Ask what to offer, what to stop, and how to keep the mouth comfortable instead.
What can we do about a dry mouth, restlessness, or breathing that sounds difficult?
Why ask it
Each of these has a practical response, from mouth swabs and repositioning to medication. Ask them to show you rather than describe it, and ask which of the three tends to distress the family more than the patient.
How much can they still hear and understand, even when they do not respond?
Why ask it
Staff will usually tell you to assume hearing continues, which changes what gets said at the bedside and who says it. It also gives you something to do when there is nothing to do.
What is safe for us to do ourselves: turning them, mouth care, changing bedding?
Why ask it
Some of this you can be taught in ten minutes; some risks hurting them or you. Ask for a demonstration on the first visit rather than working it out at midnight.
Can children visit, and how would you suggest we prepare them?
Why ask it
Hospice teams have usually done this many times and can tell you what to say, what children tend to ask, and how long a visit works best. They may also have a social worker who will talk to the child directly.
What is written in their advance directive, and does everyone on the team know it?
Why ask it
Worth checking that the document on file matches what your family understands, particularly on resuscitation and hospital transfer. Ask where the paperwork is kept in the house, since paramedics will look for it.
What happens if we call an ambulance, and when would that be the wrong choice?
Why ask it
Calling 911 can start treatment nobody wanted, so ask the team to name the situations they want to hear about first. Ask also what they would count as a genuine reason to go to hospital.
Is spiritual care available, and can it come from our own tradition?
Why ask it
Most hospices have a chaplain and can also contact a clergy member from your community. Ask whether they can arrange a specific rite or prayer, and how much notice that needs.
What help is there for us: respite, a volunteer, someone to sit overnight?
Why ask it
Families often do not know that respite is part of the benefit until they are past the point of using it. Ask what is available, how much notice it takes to arrange, and whether it has to be requested by the main carer.
What should we do in the hour after they die, and who do we call first?
Why ask it
Knowing there is no rush is the part people find hardest to believe. Ask what the sequence is: call hospice, wait for the nurse, spend time in the room if you want to, and who contacts the funeral home.
Do we need to choose a funeral home in advance, and what do you need from us?
Why ask it
The hospice usually needs a name on file to make the call for you. Doing it now removes one decision from a day when you will not want to be making decisions.
What paperwork will we need afterwards, and which of it can wait?
Why ask it
Ask specifically how the death certificate is issued, how many copies you will need, and what genuinely has to happen in the first week. Almost everything else can wait longer than families assume.
What bereavement support do you offer afterwards, and for how long?
Why ask it
Hospice bereavement support usually continues for many months after the death and covers the whole family, not only the main carer. Ask how it is offered, since it often arrives as a letter that is easy to miss.
Talking with the hospice team
Practical guidance for the conversation itself
Practical arrangements that make the conversation easier
Keep one notebook in the room
Write down names, phone numbers, medicine times, and anything you were told to watch for. Different family members will be present at different visits, and the notebook is what keeps them from asking the nurse the same question three times.
Agree on one point of contact
Nominate one person to speak with the team and pass information on. It reduces the chance of conflicting instructions, and it means the nurse knows who to call.
Ask questions at the start of a visit
If you wait until the nurse is at the door, you will get the short version. Say at the beginning that you have three things to ask, and read them from the notebook.
Ask them to write down the parts you have to carry out
Medicine schedules, signs to watch for, and the after-hours number should be on paper on the wall, not in your memory or in a text message thread.
Who on the team answers what
- The nurse handles symptoms, medicines, equipment, and what to expect physically.
- The social worker handles benefits, paperwork, family disagreements, talking to children, and respite arrangements.
- The chaplain handles spiritual care and can contact clergy from your own community.
- The aide handles washing, changing, and personal care, and often notices changes first because of the time spent in the room.
- The doctor or nurse practitioner changes prescriptions, so a request usually travels through the nurse rather than direct.
Things families often find out too late
- Respite care exists and has to be asked for, usually with a few days of notice.
- You can call the after-hours line for reassurance, not only for emergencies. Nurses expect it.
- Nothing has to happen quickly in the minutes after a death. You can sit in the room for as long as you want.
- Bereavement support continues for months and is offered to the wider family, including grandchildren.
- If you are unhappy with the care, hospices have a formal complaints route and a named person for it. Ask who that is early, rather than when you are upset.