Palliative and end of life care

Also called End of life care, Hospice care, Advance care planning

Not giving up, and not only for the last few days. It is care aimed at living as well as possible for as long as possible.

What it is

Palliative care is frequently understood as what happens when treatment stops. That misunderstanding delays it, and the delay costs people comfort and time.

It is specialist care focused on symptoms, comfort and quality of life for anybody with a serious illness. It can run alongside active treatment for years, and evidence in some cancers shows people receiving early palliative care live longer as well as better.

End of life care is the last part of that, usually meaning the final year and particularly the last days.

Around three quarters of people say they would prefer to die at home. Fewer than a third do. The gap is largely about planning: what has been discussed, what is written down, and whether the right medicines are in the house before they are needed.

Signs you might notice

The indicators that palliative input would help: increasing frequency of admissions, declining function, weight loss, symptoms that are hard to control, and a clinician who would not be surprised if the person died within a year.

In the last days: increasing sleepiness, reduced interest in food and drink, changes in breathing, cool hands and feet, and sometimes noisy breathing from secretions.

Restlessness or agitation in the last days should always prompt checking for a full bladder, pain or constipation before it is treated as terminal agitation.

How it can affect day-to-day life

The conversations people wish had happened earlier are almost always the same: what matters most, what they would not want, where they want to be, and who speaks for them if they cannot.

An advance decision to refuse treatment is legally binding. A ReSPECT form or DNACPR records recommendations. Lasting power of attorney for health and welfare lets somebody decide on your behalf. All three are better done early. See mental capacity.

Anticipatory medicines, kept in the home ahead of need, are what allow symptoms to be treated at 3am without an admission.

Carers are frequently exhausted and rarely offered anything for themselves.

Supporting someone well

Have the conversation early, and write it down. What matters, what to avoid, where they want to be, and who decides.

Get anticipatory medicines in the house before they are needed, along with a plan for who administers them.

Ask for a palliative care referral early rather than in the last fortnight. It is not a signal that treatment has failed.

Check the reversible things when someone becomes restless: bladder, bowels, pain.

Offer mouth care rather than pushing food and fluid in the last days. A dry mouth causes far more distress than reduced intake does, and mouth care is what families can do that genuinely helps.

Ask for a carer's assessment, and take respite.

Fiducia Guardian holds the advance decisions, consents, medicines and the care team in one record, which is exactly what an out-of-hours doctor arriving at midnight has no other way of knowing.

Where to get help

Ask a GP for a palliative care referral and to be added to the practice's palliative care register, which unlocks coordinated support.

Marie Curie run a free support line on 0800 090 2309. Hospice UK can find your local hospice, which almost always offers day services and family support, not only inpatient beds.

Ask about Continuing Healthcare fast-track funding, which can be arranged in days for people approaching end of life.