The terms listed here are general explanations. The wording, forms and names of services can vary between areas, so it’s always a good idea to ask for an explanation of what a term means by a doctor or nurse.

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Types of care and the people involved

Palliative care

Care that aims to improve comfort and quality of life for someone with a life limiting illness. It can begin well before the last days of life and may be given alongside treatment for the illness.

End of life care

Care for someone who is approaching the end of their life. It includes physical, emotional, practical and spiritual support, and should reflect what matters to the person.

Specialist palliative care

Extra support from professionals with specialist training when symptoms or other needs are complex. It may be provided at home, in hospital or by a hospice team.

Hospice care

Palliative and end of life care provided by a hospice service. This can include care at home, outpatient or day services, and short stays in a hospice; it’s not only for the final days. Hospices may also support family members and carers through practical advice, emotional support, counselling or bereavement services, although what is available varies between hospices.

Multidisciplinary team (MDT)

A group of professionals from different roles who work together, such as doctors, nurses, therapists and social workers.

Terms for talking about types of illness

Life limiting illness

An illness or condition that is likely to shorten someone’s life, although they may live with it for months or years.

Terminal illness

An illness that can’t be cured and is expected to lead to death. The amount of time someone may have can vary greatly.

Prognosis

A healthcare professional’s best estimate of how an illness may progress and, sometimes, how long a person may live. It can’t give an exact answer.

Deterioration

A change that means the person’s health or ability to manage everyday activities is getting worse.

Last days or hours of life

Words a care team may use when they believe someone is very close to death. Ask what changes they’ve noticed and what they expect may happen next.

Terms for planning and decision making

Advance care planning

Talking about and recording someone’s wishes, priorities and preferences for future care.

Mental capacity

The ability to make a particular decision at the time it needs to be made. Capacity can change and may differ from one decision to another.

Best interests decision

A decision made (usually by clinicians) for someone who lacks capacity for that particular decision. It must consider their wishes, feelings, beliefs and values, as well as the relevant benefits and risks.

DNACPR

An abbreviation for “Do Not Attempt Cardiopulmonary Resuscitation”. It means CPR should not be attempted if the person’s heart or breathing stops. It does not mean that other care or treatment will stop.

Treatment escalation plan or emergency care plan

A record of which treatments may or may not help if the person becomes more unwell. The name and form used can vary locally.

Advance decision to refuse treatment (ADRT)

A way for an adult to refuse specified medical treatment in the future if they later can’t make or communicate that decision. It’s  legally binding when it’s valid and applies to the circumstances.

Terms for medicines and symptom control

"Just in case" or anticipatory medicines

Medicines prescribed and kept ready in case symptoms such as pain, sickness, breathlessness or agitation develop. They’re given only when needed and as directed by an appropriate healthcare professional.

PRN or "as required" medicine

Medicine that is given when it is needed, rather than at set times.

Breakthrough dose

An extra dose of medicine used when a symptom appears or worsens between regular doses.

Syringe driver/pump

A small pump that gives medicine slowly and continuously under the skin. Its use doesn’t necessarily mean that death is imminent, and correctly prescribed medicines don’t speed up death.

Subcutaneous

The fatty layer just beneath the skin. Some medicines used near the end of life are given this way, for instance a syringe driver/pump.

Terms for changes you may notice to the person who is dying

Delirium

A sudden change in thinking or awareness that can cause confusion, distress, unusual behaviour or seeing or hearing things that aren’t there. It can have several causes and should be discussed with the care team.

Terminal agitation or restlessness

Being unable to settle, pulling at clothes or bedding, calling out or appearing distressed. Tell the care team so they can look for possible causes and help keep the person comfortable.

Respiratory secretions or noisy breathing

A rattling or gurgling sound caused by fluid collecting in the throat or airways when someone is too weak to clear it. The sound can be upsetting to hear, but it doesn’t usually mean the person is in distress.

If a term is unclear

Ask the person who used it to explain it in ordinary language. You could ask: “What does that mean for them now?” “What might happen next?” and “Who should I contact if I’m worried?”

If we haven’t included the words you’re searching for, please get in touch so we can make sure this page is useful as possible.

Send an email to info@annerobsontrust.org.uk and let us know what was missing.

For more information on understanding what to expect when someone is dying, read our Support Hub article: What questions should I ask a doctor or nurse while I’m caring for someone who is dying?