Treatment and care towards the end of life: good practice in decision making

Glossary of terms

Advance care planning: The process of discussing and recording the type of treatment and care that a patient would or would not wish to receive at a future stage. Advance care planning is usually focused on informing decisions after a person has lost capacity, or if they become unable to communicate their wishes. However, the process can help a person with life limiting illness to consider the clinical or personal arrangements for managing their condition as it progresses.  For example, where they should receive their care and who they would want to be involved in making decisions about different aspects of their care. An advance care plan is created with a patient and provides a record of the patient’s wishes and values, preferences and decisions, to ensure that care is planned and delivered in a way that meets their needs and involves and meets the needs of those close to the patient. As part of advance care planning, patients may want to have an emergency care plan (such as the ReSPECT process and other approved models), which provides concise, rapidly accessible clinical recommendations in the event of the need to make urgent treatment and care decisions.  

Advance decision or advance directive: A statement of a patient’s wish to refuse a particular type of medical treatment or care if they become unable to make or communicate decisions for themselves. They are called advance decisions in England and Wales, and advance directives in Scotland. If an advance refusal is valid and applicable to the person’s current circumstances, it must be respected. It will be legally binding on those providing care in England and Wales (provided that if it relates to life-prolonging treatment it satisfies the additional legal criteria), and it is likely to be legally binding in Scotland and Northern Ireland.

Advance statement: A statement of a patient’s views about how they would or would not wish to be treated if they become unable to make or communicate decisions for themselves. This can be a general statement about, for example, wishes regarding place of residence, religious and cultural beliefs, and other personal values and preferences, as well as about medical treatment and care. 

Artificial nutrition and hydration (ANH): See clinically assisted nutrition and hydration.

Capacity: The ability to make a decision. An adult is deemed to have capacity unless, having been given all appropriate help and support, it is clear that they cannot understand, retain, use or weigh up the information needed to make a particular decision or to communicate their wishes. 

Clinically assisted nutrition and hydration (CANH): Clinically assisted nutrition includes nasogastric feeding and percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG) feeding tubes through the abdominal wall. PEG, RIG and nasogastric tube feeding also provide fluids necessary to keep patients hydrated. Clinically assisted hydration includes intravenous or subcutaneous infusion of fluids (use of a ‘drip’), and nasogastric tube feeding or administration of fluid. The term ‘clinically assisted nutrition and hydration’ does not refer to help given to patients to eat or drink, for example spoon feeding.

Clinician: A health professional, such as a doctor or nurse, involved in clinical practice.

DNACPR: Abbreviation of ‘Do Not Attempt Cardiopulmonary Resuscitation’. These advance management plans may be called DNAR forms or Allow Natural Death decisions in some healthcare settings.

End of life: Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes those patients whose death is expected within hours or days; those who have advanced, progressive incurable conditions; those with general frailty and co-existing conditions that mean they are expected to die within 12 months; those at risk of dying from a sudden acute crisis in an existing condition; and those with life-threatening acute conditions caused by sudden catastrophic events. The term ‘approaching the end of life’ can also apply to extremely premature neonates whose prospects for survival are known to be very poor, and patients who are diagnosed as being in a persistent vegetative state (PVS) for whom a decision to withdraw treatment and care may lead to their death. 

End stage: The final period or phase in the course of a progressive disease leading to a patient’s death.

Legal proxy: A person with legal authority to make certain decisions on behalf of another adult. Legal proxies who can make healthcare decisions include: a person holding a Lasting Power of Attorney (England and Wales) or a Welfare Power of Attorney (Scotland); a court appointed deputy (England and Wales); and a court appointed guardian or court appointed intervener (Scotland). Northern Ireland currently has no provision for appointing legal proxies with the power to make healthcare decisions. 

Minimally conscious state (MCS): A state of severely altered consciousness in which minimal but clearly discernible behavioural evidence of self or environmental awareness is demonstrated. MCS is characterised by inconsistent, but reproducible, responses above the level of spontaneous or reflexive behaviour, which indicate some degree of interaction with their surroundings. (RCP Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines s.1.2)

Neonates: Newborn infants (less than one month old).

Overall benefit: In this guidance the term ‘overall benefit’ describes the ethical basis on which decisions are made about treatment and care for adult patients who lack capacity to decide for themselves. This involves weighing up the risks of harm, burdens and potential benefits for the individual patient of each of the available options, including the option of taking no action. It encompasses not only potential clinical, but also non-clinical factors such as the patient’s personal circumstances, wishes, beliefs and values. GMC guidance on overall benefit, applied with the decision-making principles in paragraphs 7 - 13, is consistent with the legal requirement to consider whether treatment ‘benefits’ a patient (Scotland), or is in the patient’s ‘best interests’ (England, Wales and Northern Ireland), 

Palliative care: The holistic care of patients with advanced, progressive, incurable illness, focused on the management of a patient’s pain and other distressing symptoms and the provision of psychological, social and spiritual support to patients and their family. Palliative care is not dependent on diagnosis or prognosis, and can be provided at any stage of a patient’s illness, not only in the last few days of life. The objective is to support patients to live as well as possible until they die and to die with dignity. 

Persistent vegetative state (PVS): Also termed a ‘permanent vegetative state’. An irreversible condition resulting from brain damage, characterised by lack of consciousness, thought, and feeling, although some reflex activities, such as breathing, continue.

Second opinion: An independent opinion from a senior clinician (who might be from another discipline) who has experience of the patient’s condition but who is not directly involved in the patient’s care. A second opinion should be based on an examination of the patient by the clinician. 

Those close to the patient: Anyone nominated by the patient, close relatives (including parents if the patient is a child), partners, close friends, paid or unpaid carers outside the healthcare team, independent advocates or others who are interested in the patient’s welfare. It may include attorneys for property and financial affairs and other legal proxies, in some circumstances.