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

Glossary of terms

Advance care planning: The process of discussing the type of treatment and care that a patient would or would not wish to receive in the event that they lose capacity to decide or are unable to express a preference, for example their preferred place of care and who they would want to be involved in making decisions on their behalf. It seeks to create a record of a 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.

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 orders 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. 

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. It involves an assessment of the appropriateness of treatment and care options that encompasses not only the potential clinical benefits, burdens and risks of those options, 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), and to apply the other principles set out in the Mental Capacity Act 2005 and the Adults with Incapacity (Scotland) Act 2000

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, and independent advocates. It may include attorneys for property and financial affairs and other legal proxies, in some circumstances. 

7

You must give patients who are approaching the end of their life the same quality of care as all other patients. You must treat patients and those close to them with dignity, respect and compassion, especially when they are facing difficult situations and decisions about care. You must respect their privacy and right to confidentiality.

8

Some groups of patients can experience inequalities in getting access to healthcare services and in the standard of care provided. It is known that some older people, people with disabilities and people from ethnic minorities have received poor standards of care towards the end of life. This can be because of physical, communication and other barriers, and mistaken beliefs or lack of knowledge among those providing services, about the patient’s needs and interests. Equalities, capacity and human rights laws reinforce your ethical duty to treat patients fairly.

9

If you are involved in decisions about treatment and care towards the end of life, you must be aware of the Human Rights Act 1998 and its main provisions, as your decisions are likely to engage the basic rights and principles set out in the Act5 

10

Following established ethical and legal (including human rights) principles, decisions concerning potentially life-prolonging treatment must not be motivated by a desire to bring about the patient’s death, and must start from a presumption in favour of prolonging life. This presumption will normally require you to take all reasonable steps to prolong a patient’s life. However, there is no absolute obligation to prolong life irrespective of the consequences for the patient, and irrespective of the patient’s views, if they are known or can be found out.

11

You must work on the presumption that every adult patient has the capacity to make decisions about their care and treatment. You must not assume that a patient lacks capacity to make a decision solely because of their age, disability, appearance, behaviour, medical condition (including mental illness), beliefs, apparent inability to communicate or because they make a decision that others disagree with or consider unwise.

12

If a patient’s capacity to make a decision may be impaired, you must provide the patient with all appropriate help and support to maximise their ability to understand, retain, use or weigh up the information needed to make that decision or communicate their wishes. You must assess their capacity to make each decision, at the time it needs to be made. You can find detailed guidance about maximising and assessing a patient’s capacity in Consent: patients and doctors making decisions together and in the codes of practice supporting the Mental Capacity Act 2005 and Adults with Incapacity (Scotland) Act 2000.6 

13

If an adult patient lacks capacity to decide, the decisions you or others make on the patient’s behalf must be based on whether treatment would be of overall benefit to the patient (see paragraphs 40 - 46  for more about assessing overall benefit), and which option (including the option not to treat) would be least restrictive of the patient’s future choices. When you are responsible for making the decision about overall benefit, you must consult with those close to the patient who lacks capacity, to help you reach a view (see paragraphs 15 - 16).