What Is Palliative Care? A Complete Guide for Families

London, 1947. A young hospital social worker named Cicely Saunders meets a patient called David Tasma. He is 40, a Jewish man from Poland. He has cancer that cannot be cured.

His worst pain is not in his body. He left Poland just before the war. He does not know what happened to his family. He has given up his faith. Professor David Clark, a historian of hospice care, calls this "existential pain" (Hospice UK).

The two talk about a new kind of place. A place where very ill people are cared for as whole people. David leaves her £500 and a promise: "I'll be a window in your home" (BMJ).

She went back to study and qualified as a doctor in 1957. In 1967 she opened St Christopher's Hospice in south London. A window there is dedicated to David. As she often said later: "It took me nineteen years to build the home round the window" (David Clark).

Her idea was simple. Treat the person, not only the disease. Today we call it palliative care.

What is palliative care, in simple words?

Palliative care is medical care that eases the pain, symptoms and stress of a serious illness. It looks after the patient and the family. The aim is the best possible life, for as long as life lasts.

The word itself is a picture. It comes from the Latin pallium, which means a cloak (Wiktionary). Think of a warm cloak around someone in a cold wind. The cloak does not stop the wind. But the person inside it is warm and protected.

Saunders added a second key idea: "total pain". This means suffering has four parts: physical, emotional, social and spiritual (BMJ). David Tasma had all four. A good palliative team looks at all four too.

What did that change feel like for patients? One patient moved to St Christopher's from another hospital. About the old hospital, they said: "I couldn't speak to anyone and I was having crying fits." And at the hospice: "The biggest difference is feeling so calm" (BMJ).

In practice, palliative care includes:

• Symptom relief: pain, nausea, tiredness, shortness of breath.
• Emotional support: help with anxiety, low mood and fear.
• Clear talk: help to understand your illness and your choices.
• One plan: the team talks to all your doctors, so everyone works from the same plan.
• Family support: practical help for carers, and bereavement counselling later (WHO).

In the World Health Organization's words, it helps people "live as actively as possible until death".

Does palliative care mean giving up?

No. This is a very common belief, and it stops many people from asking for help.

You can have palliative care at any stage of a serious illness, starting at diagnosis. You can have it alongside treatment that aims to cure you (GetPalliativeCare.org). In the UK, the NHS says the same: you may get palliative care while you still have other treatments (NHS).

Here is a simple way to see it. Your specialist focuses on the disease. The palliative team focuses on you, the person living with it. One fights the illness. The other makes sure you can still eat, sleep, breathe and think clearly while that fight goes on.

The US Center to Advance Palliative Care (CAPC) calls this "an extra layer of support". You keep your own doctors. The palliative team works with them, not instead of them (CAPC FAQ).

How is palliative care different from hospice?

Think of a serious illness as a long road. Palliative care can walk with you along the whole road. Hospice is the care for the last part of it.

So all hospice care is palliative care. But most palliative care is not hospice. Our longer guide to hospice, pain relief and support goes deeper.

	Palliative care	Hospice care
When it starts	Any time during a serious illness	Usually in the last 6 months of life
Treatment to cure	Can continue alongside	Stops; focus moves to comfort
Prognosis needed	No	Yes (in the US, 6 months or less)
Where	Hospital, clinic or home	Usually home, a care home or a hospice

In the US, Medicare has clear rules for hospice (Medicare.gov):

• Your hospice doctor and your regular doctor (if you have one) certify that your life expectancy is 6 months or less.
• You accept comfort care instead of care to cure your illness.
• You sign a "Hospice Election Statement" choosing hospice care.
• After 6 months, hospice can continue if a hospice doctor certifies again that you are still terminally ill.

Palliative care has none of these conditions. It is based on your needs, not on how long a doctor thinks you will live (GetPalliativeCare.org). Not sure which one fits? Read our guide to the 5 signs it may be time for hospice.

Who can get palliative care?

Anyone with a serious illness, at any age, including children (WHO). It is not only for cancer. It is not only for the last days of life.

WHO lists the most common illnesses in adults who need it:

• heart and blood vessel disease (38.5%)
• cancer (34%)
• long-term lung disease such as COPD (10.3%)
• AIDS (5.7%)
• diabetes (4.6%)

It also helps people with kidney failure, liver disease, dementia, Parkinson's disease, multiple sclerosis and ALS (also called motor neurone disease).

Pain and trouble breathing are two of the most common and serious symptoms. WHO says 80% of people with AIDS or cancer will have moderate to severe pain at the end of life. So will 67% of people with heart disease or COPD. WHO calls treating these symptoms early an ethical duty.

Who is on a palliative care team?

A palliative care team usually includes specially trained doctors and nurses. Social workers help with feelings, practical problems and costs. Chaplains offer spiritual care, for any faith or none, only if you want it (GetPalliativeCare.org).

WHO adds pharmacists, physiotherapists, support workers and volunteers (WHO). In the UK, counsellors and occupational therapists may also be part of your care (NHS).

Does early palliative care really help?

Yes, for quality of life. The evidence on living longer is mixed.

The best-known study is from Massachusetts General Hospital in 2010. Dr Jennifer Temel's team followed 151 people newly diagnosed with advanced lung cancer. About half got palliative care early, alongside normal cancer care (Temel et al., NEJM 2010). Compared with the others, the early group:

• had better quality of life after 12 weeks;
• had fewer symptoms of depression (16% compared with 38%);
• had less aggressive treatment at the very end of life (33% compared with 54%);
• lived longer (a typical survival of 11.6 months, compared with 8.9 months).

But one study is not the full picture. A 2017 Cochrane review combined seven trials with 1,614 people with advanced cancer (Haun et al., Cochrane 2017). Early palliative care gave small improvements in quality of life and symptoms. It found no clear difference in survival, and the evidence on survival was very weak.

So the honest summary is this. Early palliative care helps people feel better (established, small effect). It may help some people live longer, but no one can promise that (mixed). WHO adds that early palliative care reduces unnecessary hospital stays (WHO).

Why do so few people get palliative care?

WHO estimates that 56.8 million people need palliative care each year. Only about 14% of them receive it (WHO). Most people who need it live in low- and middle-income countries.

WHO names the reasons. Many countries have no palliative care policy. Few health workers are trained in it. Strict rules block access to essential pain medicines. And many people, including doctors, do not know what palliative care is.

There is also a timing problem. In standard cancer care, palliative care often starts only when treatment has stopped working (Cochrane 2017). So you may need to ask first.

How do you ask for palliative care?

1. Ask your doctor directly. You can say: "I would like a referral to the palliative care team. I want help with my symptoms while I continue treatment."
2. Ask the hospital. Many hospitals have a palliative care team. Ask a nurse or the patient services desk.
3. Search a directory. In the US, use the Palliative Care Provider Directory. In the UK, ask your GP or use the Hospice UK care finder.
4. Check the cost. In the US, most insurance plans cover all or part of palliative care. Medicare and Medicaid do too (CAPC FAQ). In the UK, ask your GP what NHS and hospice care is available near you. If cost worries you, ask the team's social worker about payment options.

In other countries, ask your hospital doctor or your national hospice association what is available near you.

What should you ask the palliative care team?

Bring these questions to your first visit:

• How will you work with my other doctors?
• Which symptoms can you help with?
• Will this change my current treatment plan?
• What support is there for my family?
• How do I reach someone at night or at the weekend?

The team will also ask you questions. Some are hard. It helps to think about them before you go:

• What does a good day look like for you now?
• What are you most worried about?
• What would you be willing to go through for more time? What would you not?
• Who do you want to make decisions for you if you cannot speak?

Your answers are the start of a care plan. The free end-of-life readiness check shows which parts you already have. You can write them down in an advance directive or living will. An advance directive is a letter to the doctors who will meet you on a day you cannot speak. You can also choose a healthcare proxy, the person who speaks for you on that day. Then talk to the people you love. Our guide on how to talk to family about end-of-life wishes can help you begin.

What did Cicely Saunders want every patient to hear?

Saunders put her life's work into one line. Her colleague Robert Twycross quoted it at her memorial service on 8 March 2006:

"You matter because you are you, and you matter to the last moment of your life." — Dame Cicely Saunders (Oxford Essential Quotations)

That is the whole promise of palliative care. You are not only a patient. You are a person with a history, a family and things you still want to do.

Asking for palliative care is not giving up. It is planning ahead, so the hard parts are less frightening. Does someone you love have a serious illness? Or do you? One small step today is enough. Ask your doctor: "Could palliative care help us?"

If you are finding it hard to cope, you do not have to carry it alone. Find someone to talk to.