Palliative care is not the same as hospice
Palliative care is specialist help with symptoms, stress and decisions during a serious illness. It can start at diagnosis, it can run alongside treatment aimed at a cure, and many families never hear about it because they assume it means giving up.
The confusion is understandable. Hospice is a form of palliative care, and the two words are often used as if they meant the same thing. They do not. Hospice is for people with a terminal illness who have decided to focus on comfort rather than on treatment intended to cure. Palliative care, in the broader sense, is for anyone living with a serious illness, at any stage, whether or not they are still pursuing treatment.
A person with heart failure, advanced COPD, kidney disease, cancer, Parkinson's or dementia can receive palliative care for years while still seeing their cardiologist or oncologist and still having the treatment those specialists recommend. The palliative team adds a layer of support; it does not replace anyone.
What a palliative care team actually does
Palliative care is usually delivered by a team that may include a physician, a nurse practitioner or nurse, a social worker and sometimes a chaplain. What they focus on:
- Symptoms. Pain, breathlessness, nausea, fatigue, poor appetite, constipation, anxiety, low mood, trouble sleeping. These are their specialty, and they often have options a busy specialist has not tried.
- Decisions. Helping the person understand what their illness is likely to do, what the options realistically offer, and what matters most to them, then making sure the treatment plan reflects it.
- Coordination. When several specialists are involved and nobody is looking at the whole person, a palliative team often becomes the one that does.
- The family. Support for the people doing the caring, including the practical and emotional strain, and help planning ahead.
What it does not do
This is the part that catches families out, as it does with hospice. A palliative care team visits or sees the person on a schedule, often every few weeks, and is reachable by phone. It does not send someone to stay in the house. It does not help with bathing, dressing, meals, toileting or the night. Those hours, if they are needed, come from family or from paid help.
It also does not take over medical care. The person's other doctors stay in charge of their own treatment; the palliative team advises, adjusts symptom medication, and talks to the others.
Palliative care or hospice: how they compare
The clearest differences are about eligibility and treatment:
- Who it is for. Palliative care: anyone with a serious illness, at any stage. Hospice under the Medicare hospice benefit: people whose doctor certifies a prognosis of six months or less if the illness follows its usual course.
- Treatment. Palliative care works alongside treatment aimed at the illness itself. Choosing the Medicare hospice benefit means choosing comfort care rather than curative treatment for the terminal illness.
- What is bundled. Hospice comes as a package that typically includes the team, related medication, equipment and supplies. Palliative care is usually billed visit by visit, like seeing any other clinician.
Many people move from one to the other. Palliative care can be the bridge that makes a later conversation about hospice feel less abrupt, and that conversation goes better when the person has already said what matters to them. Our guide to hospice and in-home care covers what hospice provides once that point comes.
Can you get palliative care at home?
Often, but not everywhere. Palliative care is most widely available in hospitals, where a consultation team sees inpatients, and in outpatient clinics attached to hospitals and cancer centers. Home-based palliative programs exist in many areas, run by health systems, by some medical groups, and by some hospice organizations, but availability varies a great deal by region and by insurer.
To find out what exists for your family:
- Ask the treating doctor for a palliative care referral by name. Specialists do not always offer it, and asking directly is the fastest route.
- If the person is in hospital, ask whether the palliative team can see them before discharge, and whether they can arrange follow-up at home or in clinic.
- Call the insurer or the Medicare Advantage plan and ask specifically whether they cover home-based palliative care and which providers they work with.
- Ask local hospice organizations whether they run a palliative program for people who are not hospice-eligible or not ready for hospice. Many do.
How is it paid for?
There is no separate Medicare palliative care benefit equivalent to the hospice benefit. Under Original Medicare, visits with palliative clinicians are generally covered under Part B like other doctor and nurse practitioner visits, with the usual deductible and coinsurance. Medicare also covers advance care planning conversations with a clinician. Medicaid and private insurance coverage varies by state and plan, and some Medicare Advantage plans offer home-based palliative programs. Confirm with the plan before assuming.
None of these typically pay for ongoing hours of personal care at home. Our guide to how to pay for in-home care covers the routes that can, such as Medicaid home and community-based services and long-term care insurance.
The conversations it makes easier
One of the most valuable things a palliative team does is help a family talk about what they have been avoiding: what the person wants if they become sicker, where they want to be, what they would consider too much treatment, and who should decide if they cannot. Those conversations are easier with someone experienced in the room, and they are far easier before a crisis than during one.
Write the outcome down. A health care proxy and an advance directive turn those wishes into something a hospital will act on. Our guide to the legal documents to sign before care is needed covers what they are.
Where in-home care fits
Palliative care manages symptoms and decisions; in-home care covers the hours in between. The two work well together. A caregiver who is in the house regularly is often the first to notice that pain is worse, that eating has dropped off, or that nights have become difficult, and that information is exactly what the palliative team needs. Give the caregiver the team's phone number, agree what they should report and to whom, and keep a simple shared log.
A non-medical caregiver does not replace nursing care; our guide to home care and home health care explains the difference.
Where do you start?
Ask the treating doctor, at the next appointment, for a palliative care referral, and ask your insurer whether home-based palliative care is covered where the person lives. If you also need hands-on help in the house, put the zip code into The Care Royal to see which independent caregivers and agencies work in the area and what they charge. Searching is free for families, and you decide who to hire.
General information for families, not medical, legal or insurance advice. Coverage rules, program availability and eligibility differ by state, plan and provider. Confirm details with the person's clinicians and insurer. In an emergency, call 911.