I Need Help Understanding Palliative Care
Palliative care is specialized care for people living with a serious illness.
It can help with symptoms, difficult decisions, communication, caregiving strain, and the effects of illness on daily life.
Palliative care usually works alongside the care the person is already receiving. It can be provided while treatment for the illness continues.
Palliative care isn’t the same as hospice.
Name the Problem You Need Help With
Ask what needs help now. That may be:
- pain or other symptoms
- understanding the illness or what may happen next
- making a difficult treatment decision
- getting different answers from different clinicians
- caregiving strain
- a difficult family conversation
- emotional, spiritual, financial, or practical concerns
Ask for palliative care by naming the problem you need help with.
“We need help with [specific problem]. Could palliative care help with this?”
Say this to the treating clinician, or call the palliative-care program at the hospital or health system directly.
You don’t have to wait until treatment stops working or death is near to ask.
Find Out What the Palliative-Care Team Will Actually Do
Ask:
- Is a referral required?
- How soon could the person be seen?
- Is this one consultation or ongoing care?
- What problem will the palliative-care team help manage?
- What will remain with the current treating team?
A palliative-care consultation isn’t automatically a new primary medical team.
Programs vary. Some provide ongoing care. Others provide consultation and recommendations while the existing clinicians continue managing the illness.
Know Who to Call in the Meantime
Ask:
- Who’s managing the main illness?
- Who’s managing symptoms now?
- Who should we call between visits?
- Who should we call after hours?
- Who handles the problem until palliative care sees the person?
If several clinicians are involved, ask:
“Who’s looking at the whole picture, and who’s responsible for each part of the plan?”
Don’t wait for the palliative-care appointment if the problem needs attention sooner.
If a Serious Treatment Decision Is the Main Problem
If you’re deciding about your own treatment, use I Need Help Deciding About Treatment →
If you’re making the decision for someone else, use I Need Help Making a Medical Decision for Someone Else →
Palliative care may help with the conversation, but the immediate job is understanding the decision, likely outcomes, burdens, and what fits the person.
If the Person Doesn’t Want Palliative Care
Some people hear “palliative care” and think treatment is stopping or death is near.
Ask:
“What are you worried palliative care would mean?”
Answer the specific concern rather than trying to persuade them.
If the name itself is getting in the way, ask whether similar help is available through supportive care, symptom management, pain and symptom care, or another service name.
The goal is to get help with the problem, not to win an argument about the label.
If the person can make the decision, they can decline palliative care.
If Palliative Care Isn’t Available
Ask:
“Who can help with the specific problem we hoped palliative care would address?”
Depending on the problem, that may be the treating clinician, a pain or symptom specialist, social work, spiritual care, behavioral health, rehabilitation, or hospice when it fits the person’s situation and wishes.
If there’s no specialty palliative-care program, other help may still be available. Ask who can do the specific job you need.
Before You Rely on the Plan
Confirm:
- the referral was actually received
- the program accepted it
- when the person will be seen
- whether the service is consultation-only or ongoing
- who will manage the problem until then
- who to call between visits and after hours
- whether insurance requires authorization
- what costs or separate bills to expect
For help following a referral through, see I Got a Referral. What Next? →
Helpful Resources
Find palliative-care programs in your area and contact them directly to confirm eligibility and availability.
Information about palliative care, hospice, and the difference between them.
Learn More
Information about what palliative care does, who can receive it, and how it can work alongside treatment.
