We've put together some of the words you might not be familiar with when it comes to end of life care, to make things a little bit clearer.
Acute pain: This type of pain usually happens suddenly. It can happen regularly or when you do something in particular, like move in a certain way. It can be sudden and come in spasms or waves. See our Controlling pain page for help.
Advance care planning (ACP): Advance care planning is about thinking ahead and talking to the people involved in your care, such as your family, doctors or nurses. It can be written down in a document that is sometimes referred to as an advance statement or, in Scotland, anticipatory care planning. It’s a process that allows you to express your preferences about the care you’d like to receive, including what you want to happen, what you don’t want to happen and who’ll speak on your behalf.
Advance care planning is an entirely voluntary process and you shouldn’t feel any pressure to include anything you’re not comfortable with. You can change your mind about anything you put in your advance care plan at any time. This is fairly common; up to one third of people make changes to their advance care plan. Our Planning your care in advance page has more information.
Advance Decision or Advance Directive: As part of your advance care planning, you’re entitled to state whether there are particular treatments you don’t want to have. This is called making an ‘Advance Decision to refuse treatment’ and means your wishes about that particular treatment should be followed. An Advance Decision to refuse treatment will only be used if at some time in the future you lose the ability to make your own decisions about your treatment. Our Planning your care in advance page has more information.
Analgesics: A group of painkillers which includes paracetamol and aspirin. Some are available over the counter, while others are only available on prescription. See our Controlling pain page for help.
Ascites (pronounced ‘a-sigh-tees’): A condition which causes fluid to build up in the abdomen (the area of your tummy just below your ribs). It can be caused by too much fluid being produced by the body, blockages or fluid leaking out of veins into the abdomen. It can cause your bowel to work more slowly and lead to constipation. There is more information available on our Oedema page.
Basic care: This includes nursing care, pain relief and relief of other symptoms, and the offer of food or drink by mouth (perhaps with a spoon, straw or cup).This kind of care may also be referred to as comfort care.
Breakthrough pain: This is when pain happens even though you’re taking pain killers. It may occur when you do something in particular – such as eat, move, sneeze or cough. It may also mean that a dose of a drug is wearing off. The Controlling pain page has more information.
Chronic pain: This is pain that lasts a long time. It can be constant or go away and come back again. Our Controlling pain page has more help.
Clinical commissioning group: In Scotland and Wales, this is called a local health board. The clinical commissioning group or health board decides how NHS money is spent locally. See also continuing healthcare assessment.
Clinical nurse specialists: Clinical nurse specialists work in all settings (home, hospital and hospice). They work in teams, usually supported by a specialist palliative care doctor. They have specialist skills and will coordinate much of the care. They assess symptoms and advise on appropriate treatments. Care needs at the end of life has further information.
Clinician: Any health professional, for example, a nurse, involved in clinical practice.
Delirium: Confusion, changes in perception and loss of awareness of surroundings can all be signs of delirium. This is very common in people with a terminal illness and is often avoidable and reversible. See Difficulty thinking clearly for more details.
District nurse: A district nurse organises and coordinates home care and can arrange for services to be provided if you’re being cared for at home. They can also give you information about local services and carry out a formal assessment of your nursing needs. See People who may be involved in your care or download our Living with a terminal illness booklet for more help.
End of life care: End of life care is for people who are considered to be in the last year of life, but this timeframe can be difficult to predict. End of life care aims to help people live as well as possible and to die with dignity. It also refers to care during this time and can include additional support, such as help with legal matters. End of life care continues for as long as it’s needed. More detailed information can be found on our What is palliative care page.
Green form or green certificate: When registering a death, the registrar will give you a Certificate for Burial or Cremation. This gives permission for the body to be buried or for an application for cremation to be made, and you should give this to the funeral director. See Registering a death for more information.
Healthcare assistants: Healthcare assistants work in the home, in care homes, in hospices and in hospitals. A healthcare assistant isn’t a registered nurse, but they have been trained to help with personal care like: keeping clean, dressing, eating and drinking.
Hospice: Hospices are smaller and have a different atmosphere to hospitals, making them feel more like someone’s home. They provide free, tailored care that’s suited to an individual’s needs. They are usually run by a team of doctors, nurses, social workers, counsellors and trained volunteers.
Just in Case box: The NHS issues Just In Case boxes in England, Scotland and Wales for people who are ill and being cared for at home. These include medications and equipment for use in emergency situations. Our Managing medications page has more information.
Life-sustaining treatments: Treatment that could potentially keep you alive such as a mechanical ventilator to help you breathe, cardio-pulmonary resuscitation (CPR) which beats your beat and helps your lungs to work, intravenous medicine and assisted feeding, where substitute food fluids are given by drip or injection. More details can be found on Planning your care in advance.
Lymphoedema: This is a swelling which develops because of a build-up of fluid in the fatty tissues just under the skin. It can occur in any part of the body, although it most commonly affects the arms and legs. This develops because of a build-up of fluid in the fatty tissues just under the skin. It can occur in any part of the body, although it most commonly affects the arms and legs. People are affected by lymphoedema when their lymphatic system, which normally drains fluid away, is damaged or disrupted. This may be caused by an illness, surgery or treatments such as radiotherapy. Further details can be found in our Oedema page.
Medical Certificate for Cause of Death (MCCD): A certificate confirming the cause of death issued by hospitals and hospices. It includes information on how to register the death and should be taken to the local register office. From April 2015 Scotland is introducing an electronic MCCD system. For further reading, see our Verifying and certifying a death page.
Medicine Administration Record (MAR): This is the official report of any drugs and doses given by a healthcare professional to a hospital patient. They are often given to the carers to provide guidance around dosing and medications at home.
Nerve blocks: Nerve blocks are procedures where nerves are injected with painkillers to modify and block pain. More information is on our Pain relief and common side effects page.
Neurologist: a doctor that specialises in the treatment of disorders that affect the nervous system, including the brain and spinal cord.
Neuropathic pain: Neuropathic pain may be experienced in a variety of ways – as stabbing, burning, sharp pain, or tingling. This is caused by damaged nerve endings or a trapped/irritated nerve. You might get it in a part of the body where you don’t usually feel anything, so it can feel a bit strange. Our Controlling pain page has more help.
NHS continuing healthcare: NHS continuing healthcare is health and social care that you may be able to get free of charge from the NHS across the UK. It’s for people who aren’t in hospital but have complex ongoing healthcare needs. It’s sometimes called fully-funded care. More details are on our NHS continuing healthcare page.
Non-steroidal anti-inflammatory drugs (NSAIDs): NSAIDs may be taken to relieve bone pain. They’re available over the counter as aspirin and ibuprofen (Nurofen®, Brufen®). However there are many other types of NSAIDs that are prescribed by doctors. For further information, see our Pain relief and common side effects page.
Occupational therapist: They can help you make adjustments to your home and help you find ways of continuing to carry out day to day activities. More information on htis topic are on our Care needs at the end of life page.
Oedema (pronounced ‘e-dee-ma’): A build-up of fluid in a part of the body. Oedema causes your tissue to become swollen and can also cause skin discolouration, aches and tenderness, stiff joints, weight gain or loss and raised blood pressure and pulse. More details for dealing with this condition are on our Further details can be found in our Oedema page.
Oncologist: A doctor who specialises in diagnosis and treatment of cancer. Most NHS hospitals have an oncology unit, and a team of oncology nurses.
Opioids: Safe and effective pain killers divided into two groups: strong opioids and weak opioids. Weak opioids include codeine and dihydrocodeine. Strong opioids include morphine, fentanyl and methadone. Further information is available on our Pain relief and common side effects page.
Palliative care consultant: A doctor who leads a specialist team in the provision and management of all patients with chronic and terminal illness. They are employed by the hospital and also work in hospices.
Palliative care: Palliative care is for people living with a terminal illness where a cure is no longer possible. It’s also for people who have a complex illness and need their symptoms controlled. Although these people usually have an advanced, progressive condition, this isn’t always the case. Palliative care aims to treat or manage pain and other physical symptoms. It will also help with any psychological, social or spiritual needs. Palliative care includes caring for people who are nearing the end of life. See our What is palliative care page for more details.
Primary care team: When someone is ill and living at home, their medical care is the responsibility of their primary care team. This traditionally includes your GP, practice nurses, district nurses and health visitors. They are usually based in a health centre or surgery. See People who may be involved in your care or download our Living with a terminal illness booklet for more help.
Terminal illness: Someone has a terminal illness when they reach a point where they, or their medical team, carers or loved ones, understand their illness is likely to lead to their death. Terminal illness includes a wide range of different illnesses and individual needs. People may have a single disease or a number of conditions. Depending on their condition and treatment, people may live with a terminal illness for days, weeks, months or even years. Our What is a terminal illness? page has further reading.
White certificate: Also known as form BD8, this is provided by the registrar when registering a death if the person who has died had a pension or benefits. Once completed it’s sent to the Department for Work and Pensions (DWP) for processing.