Palliative Care 101
A plain-language guide to palliative care
Most people meet palliative care late, if at all - usually because someone told them it was something other than what it is. Here is the plain version.
What palliative care is
Palliative care is support along your journey with a serious illness - from the time of diagnosis onward. It is not a stage you arrive at near the end. It starts whenever you need it, and it can continue for years.
You keep getting treatment. What palliative care adds is managing your pain and your symptoms, ironing out your goals, and supporting you so that you can actually achieve those goals - including a cure, if that is what is ahead. If you are cured, you simply go back to your primary care doctor.
It is delivered by a team - physicians, nurses, social workers, chaplains, and pharmacists - who work alongside your other doctors rather than in place of them.
This page describes palliative care in the United States. How it is defined, funded, and delivered is different in the UK, Europe, and elsewhere.
Common myths
Six things people believe about palliative care that keep them from it.
Myth
“Palliative care and hospice are the same thing.”
What’s true
This is the big one. Palliative care is support along your journey, from the time of diagnosis until the end of life. Hospice is for people in the last six months of life. The practical difference in the US: with palliative care you can keep receiving treatment, including treatment meant to cure you. With hospice, you cannot receive curative treatment and hospice care at the same time.
Myth
“Palliative care means giving up.”
What’s true
This one is ironic, because with palliative care you are still getting treatment. We manage your pain and your symptoms, iron out your goals, and support you so you can actually achieve them - including a cure. And palliative care support has been shown to help people live longer, not shorter.
Myth
“It's only for cancer.”
What’s true
Palliative care is often for people with cancer - especially cancers like brain or pancreatic, or cancer that has spread to the bone - and it is frequently based in cancer centers. But there are now roles for people with dementia or ALS as well. It may be built into a clinic you already attend, or your family doctor can refer you. Sometimes your insurance company is the one to suggest it.
Myth
“It's only for the very end.”
What’s true
It is definitely not - although people are often referred so late that the very end is when we meet them. That is a problem with how referrals happen, not a description of what palliative care is for.
Myth
“My doctor will bring it up when it's time.”
What’s true
Many doctors are not fully familiar with what palliative care does, and some carry the same misconceptions everyone else does, so they don't raise it at the right time. Sometimes it falls to patients and their families to bring it up.
Myth
“It means going in for yet another appointment.”
What’s true
Often it doesn't. A lot of palliative care can be done virtually, from your own home - which matters when you are tired, in pain, or relying on someone else to drive you. Ask whether video visits are an option; many teams offer them.
In a randomized trial, patients with metastatic non-small-cell lung cancer who received palliative care early, alongside standard treatment, had better quality of life, fewer depressive symptoms, and lived longer.
How to ask your doctor for it
You do not need permission, a crisis, or a particular diagnosis to ask. These are sentences that tend to work.
Words you can borrow
- "I'd like a referral to palliative care to help me manage symptoms while I continue treatment."
- "I'm not looking for hospice care at this time. I want to continue treatment and have palliative care alongside it."
- "My pain and fatigue are affecting my daily life more than I've let on. Who on the team handles that part?"
- "I want to understand what's ahead so I can plan. Is there someone who specializes in those conversations?"
- "Does this hospital have an outpatient palliative care clinic? I'd like to be seen there."
A few notes
- If the answer is no, ask why - and ask what would need to change for a referral to make sense.
- You can self-refer to some outpatient programs. Call the clinic directly and ask.
- Bring one specific symptom that is limiting your life. Concrete beats general.
- You can search for palliative care near you at getpalliativecare.org.
Frequently asked questions
No. With palliative care you keep all of your other doctors - we work alongside them, not instead of them. Hospice is different: on hospice you would typically stop seeing your other doctors.
Coverage varies. The most useful thing you can do is call your insurance company directly and ask what is covered for palliative care under your specific plan.
In a hospital, in a clinic, or through a home-based program.
Find palliative care near you at getpalliativecare.org (opens in a new tab)
Not necessarily - and sometimes it means fewer. One of the first things we do is go through your whole medication list and work out what is actually needed.
Of course. We often care for the patient and the family together, because we appreciate how hard this is on the entire family unit.
Expect it to last around an hour. You will be asked about your understanding of your medical condition, and about your symptoms - whether you are having pain, nausea, or any other side effects. If you want to, you will be asked about your wishes for your health care. Then the palliative care team member you are seeing will go through the ways they might be able to support you at home.
No, though the two often meet. An advance directive is a legal document that names who speaks for you if you cannot speak for yourself, and records what treatments you would and would not want. Every adult should have one, whether or not they are ill.
You can create one for free at PREPARE for Your Care, which walks you through it in plain language and gives you the right form for your state. You will then need to have it notarized - or, in some states, signed in front of two witnesses.
A POLST - Physician Orders for Life-Sustaining Treatment - is a different thing. It is a medical order signed by a clinician, meant for people who are already seriously ill or frail, and it is the more formal way of recording decisions like whether you want CPR. It travels with you, so paramedics and hospital teams can follow it.
Palliative care teams help people think both of these through, but the care itself is much broader.
Free advance directives at prepareforyourcare.org (opens in a new tab)
How POLST works in your state at polst.org (opens in a new tab)
Still have a question? Send it to me - the ones that come up most often end up on this page.