Questions to Ask About Palliative Care
Questions to ask a palliative care team about symptom control, decisions, and support at home, whether you are the patient or the family member arranging care. Palliative care can run alongside treatment for the illness itself, while hospice is a narrower service with its own rules, and that difference is covered here.
The questions
Open any question for the note
Is what you are offering palliative care or hospice care, and what is the difference for us?
Why ask it
The terms are used interchangeably in conversation and mean different things in practice, particularly around eligibility and whether treatment for the illness continues. Ask which one this referral is, since families often believe they have agreed to one and find later that it was the other.
Can we have this while still receiving treatment aimed at the illness?
Why ask it
Palliative care is generally available at any stage of a serious illness and alongside chemotherapy, dialysis, or surgery, whereas hospice enrolment usually involves stopping treatment intended to cure. Getting this stated plainly prevents the common fear that accepting help means giving up.
Who is on the team, which of you will we see most often, and where do visits happen?
Why ask it
A full team usually includes a doctor, nurses, a social worker, and a chaplain, and the person you actually see most is often a nurse. Ask whether visits are at home, in a clinic, or only during hospital stays, because that determines how much of this you will be managing alone.
Who answers the phone at three in the morning, and is it a clinician?
Why ask it
Nights and weekends are when symptoms frighten people, and an answering service that takes a message is not the same as a nurse who can advise or visit. Ask what happened on the last few overnight calls rather than accepting that someone is always available.
How quickly can someone come if a symptom becomes unmanageable at home?
Why ask it
You want a time in hours, and a clear account of when the answer is to call an ambulance instead. Families often end up in an emergency department at midnight simply because nobody explained the alternative in advance.
Which symptoms will you address first, and what should we expect to notice in the first week?
Why ask it
Pain, breathlessness, nausea, constipation, and confusion are the usual priorities, and a specific plan for the first week gives you something to measure against. If the answer is general reassurance, ask what the goal is for each symptom and how it will be checked.
What are the trade-offs of the medicines you are proposing?
Why ask it
Drowsiness, constipation, dry mouth, and confusion are common, and some of them can be managed if raised early. A team willing to name the costs of a medication is easier to trust when they say a dose is safe.
If pain relief needs to increase, how do you weigh comfort against alertness?
Why ask it
This is the trade-off most families end up facing, often when someone wants to stay lucid for a visit or an occasion. Ask how flexible dosing can be, and say plainly which side of that balance the patient would choose.
What has the patient been told about what to expect, and what do they want to know?
Why ask it
People differ enormously in how much detail they want, and families sometimes ask for information to be withheld from the person it concerns. Settling who is asking what, and with whose consent, prevents a great deal of later distress.
Who is coordinating care now, and what happens with the other specialists?
Why ask it
Serious illness often involves several consultants who do not speak to each other, and the palliative team may or may not take on coordination. Ask who reconciles the medication list and who you call about a conflicting instruction.
What documents do you need from us, and what does each one actually decide?
Why ask it
An advance directive, a healthcare proxy or power of attorney, and a resuscitation order do different jobs, and only some of them bind paramedics. Ask where the forms need to be kept, since a document in a drawer upstairs has no effect at the moment it is needed.
If the patient cannot speak for themselves, who do you turn to, and what should we settle now?
Why ask it
Naming one decision maker in advance spares a family from arguing in a corridor under pressure. Ask which decisions are likely to come up, so they can be discussed while the person concerned can still take part.
How do you work with our religious and cultural practices around illness and dying?
Why ask it
Requests about diet, washing, prayer, who may be present, and what happens to the body immediately after death are practical matters, not preferences to be accommodated later. A team that asks about this early is one that has done it before.
What will this cost, and what does the insurance or health service cover?
Why ask it
Coverage differs between the professional visits, the medicines, the equipment, and any paid help in the home, and the gaps are where families are caught out. Ask for the likely out-of-pocket items in writing.
What equipment and supplies will come to the house, and who is responsible for them?
Why ask it
A hospital bed, oxygen, a commode, and dressings change a house quickly, and someone has to order, maintain, and eventually return them. Ask what has to be arranged before the first night at home, because that list is usually longer than expected.
What support is there for me as the person doing most of the care, and is respite available?
Why ask it
Caregiving at this intensity is physically and financially draining, and respite, home aides, and counselling are often available but rarely offered unprompted. Ask specifically how many hours, how they are arranged, and how much notice is needed.
What should we tell the children, and can someone help us do it?
Why ask it
Social workers and chaplains on palliative teams generally have experience with this and can suggest words appropriate to a child's age. Children who are kept entirely outside it tend to fill the gaps with something worse.
How will we know when things are changing, and what happens in the last days?
Why ask it
Changes in breathing, appetite, alertness, and awareness follow patterns a nurse can describe in advance. Knowing what is expected makes it far less frightening in the moment and reduces unnecessary emergency calls.
If death happens at home, what do we do in the first hour, and who do we call?
Why ask it
There is a practical sequence involving the hospice or care team, the doctor certifying death, the funeral director, and in some places the authorities. Written instructions kept by the phone are worth asking for now rather than working it out that night.
What support continues for the family afterwards, and for how long?
Why ask it
Many hospice programmes provide bereavement contact for a period after a death, including groups and individual sessions. Ask what is offered, who initiates it, and whether it extends to grandchildren and other relatives.
Practical notes for these conversations
Practical guidance for the conversation itself
Before the First Meeting
Bring a second person to take notes
These meetings cover a lot of information at a time when nobody retains much. One person listens and asks, the other writes, and both compare notes afterwards.
Bring the full medication list
Include prescriptions, over-the-counter medicines, and anything recently stopped, with doses. Palliative teams often simplify a list considerably, and they need to see all of it first.
Write down what matters most to the patient
Staying at home, staying alert, being free of pain, attending one particular event, avoiding another hospital admission. These priorities conflict at times, and the team can only work to them if they know the order.
Ask the patient what they want to be asked
Some people want every detail and some want none, and this can change week to week. Checking directly is better than deciding on their behalf.
Decisions to Settle Within the Family
- Who is the single point of contact for the care team.
- Who holds the legal authority to decide if the patient cannot.
- Where the patient would prefer to be cared for, and whether that is realistic at night.
- Who can be present, and whether anyone is to be kept away.
- How much information is shared, with whom, and by whom.
- What each family member can genuinely commit to in hours per week.
- How costs will be met, and by whom, before the bills start arriving.
Practical Matters Easily Overlooked
- Where the resuscitation form is kept, so paramedics can see it immediately.
- How to get medicines dispensed at the weekend or on a holiday.
- Whether the house needs a ramp, a stair rail, or a downstairs bed before discharge.
- Who has keys, in case a nurse arrives and nobody can reach the door.
- How to handle repeated visitors when the patient is tired.
- What the plan is if the main caregiver becomes ill.
- Which pharmacy stocks the stronger pain medicines, since not all do.