Glossary of Useful Terminology

Advance Care Planning (ACP)  is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. An ACP discussion might include:

  • the individual’s concerns and wishes,
  • their important values or personal goals for care,
  • their understanding about their illness and prognosis,
  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.

(Advance Care Planning: a guide for health and Social care Staff NHS end of Life care Programme, Published February 2007, revised August 2008.)

Advance Directive/Advance Decision/Advance Decision to Refuse Treatment (ADRT)  – This is a decision to refuse specified treatment made in advance by a person who has capacity to do so. This decision only applies at a future time when advance that person lacks capacity to consent to, or refuse, the specified treatment. This is set out in section 24 (1) of the Mental capacity act. Specific rules apply to advance decisions to refuse life-sustaining treatment. to refuse an advance decision to refuse treatment:

  • can be made by someone over the age of 18 who has mental capacity; (ADRT)
  • is a decision relating to refusal of specific treatment and may also include specific circumstances;
  • can be verbal, but if an advance decision includes refusal of life sustaining treatment, it must be in writing, signed and witnessed and include the statement ‘even if life is at risk’;
  • will only come into effect if the individual loses capacity;
  • only comes into effect if the treatment and any circumstances are those specifically identified in the advance decision;
  • is legally binding if valid and applicable to the circumstances.

(Capacity, care planning and advance care planning in life limiting illness February 2012 – National End of Life Care Programme)

Advance Statement – a statement that conveys a person’s preferences, wishes, beliefs and statement values regarding their future care.  The aim is to provide a guide to anyone who might have to make decisions in the person’s best interest if that person has lost the capacity to make a decision.

Best interests (in the context of patients lacking capacity to make a particular decision) – Any decisions made, or anything done for a person who lacks capacity to make specific decisions, must be in the person’s best interests. The Mental  Capacity Act 2005 of patients act 2005 (England and Wales) sets out how a best interests decision should be made.  Any staff involved in the care of a person who lacks capacity should  make sure a record is kept of the process of working out the best interests of particular that person for each relevant decision, setting out:

  • how the decision about the person’s best interests was reached;
  • what the reasons for reaching the decision were;
  • who was consulted to help work out best interests; and
  • what particular factors were taken into account

Best practice models – A method or technique that has consistently shown results superior to models those achieved with other means, and that is used as a benchmark. In addition, a ‘best’ practice can evolve to become better as improvements are discovered.

Care Pathway – a care pathway is: “anticipated care placed in an appropriate time frame, written and agreed by a multidisciplinary team.”

“it has locally agreed standards based on evidence where available to help a patient with a specific condition or diagnosis move progressively through the clinical experience.”

“it forms part or all of the clinical record, documenting the care given.”

“it facilitates and demonstrates continuous quality improvement. It includes patient milestones and clinical interventions noted on the day or stage that they are expected to occur.”

(Welsh National Leadership and Innovation Agency for Healthcare guide to integrated care pathways, 2005).

Clinical Pathway  – a standardised set of actions aiming to optimise care for a particular clinical problem, in line with evidence of guidelines. (King’s Fund, 2012)

End of Life – Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. this includes patients whose death is imminent (expected within a few hours or days) and those with:

(a) advanced, progressive, incurable conditions

(b)general frailty and co-existing conditions that mean they are expected to die within 12 months

(c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition

(d)life-threatening acute conditions caused by sudden catastrophic events.

In General Medical council guidance the term ‘approaching the end of life’ also applies to those extremely premature neonates whose prospects for survival are known to be very poor, and to patients who are diagnosed as being in a persistent vegetative state (PVS) for whom a decision to withdraw treatment may lead to their death.

Equality Act 2010 – nine protected characteristics – In accordance with the public sector equality duty (section 149 of the equality act 2010), public authorities must have due regard to the need to eliminate discrimination, harassment and victimisation and other characteristics conduct prohibited by the act; advance equality of opportunity between people who share a protected characteristic and those who do not; foster good relations between people who share a protected characteristic and those who do not. these aims of the public sector equality duty apply to the following protected characteristics: age, disability, gender, gender reassignment, pregnancy and maternity, race, religion or belief, sexual orientation, and marriage and civil partnership (but only in regards to the aim of eliminating discrimination and harassment).

Guidelines/ guidance – NICE  uses the term ‘guidance’/ ‘guidelines’ interchangeably, to refer to guidance evidence-based recommendations on the most effective and cost-effective treatment and care of people with specific diseases and conditions, and recommendations for populations and individuals on interventions that can help prevent disease or improve health.

The professional regulators (GMC, NMC, HCPC and GPHC), produce regulatory ‘guidelines’/ ‘guidance’ on how professional standards should be achieved.

The LACDP has produced implementation ‘guidance’ for service providers and commissioners on delivering the Priorities for care of the Dying Person.

Alliance members have agreed that they will not use the terms ‘guidelines’ or ‘guidance’ in relation to care in the last few days and hours of life other than in the three specific contexts described above.

Independent Mental Capacity Advocate (IMCA) – If a person who lacks capacity has no close family or friends to support or represent them or no-one whom it is appropriate to consult, then an Independent Mental Capacity Advocate (IMCA) must be instructed and consulted regarding decision-making about serious medical treatment or about placement in hospital for longer than 28 days or a care home for longer than 8 weeks. the only exception is when an urgent decision is needed. an ICMA may be appointed in some other circumstances.

Lasting Power of Attorney (LPA) – An LPA is a statutory form of power of attorney created by the Mentalof Attorney Capacity act 2005 (England and Wales). Anyone who has the capacity to do so may choose a person (an ‘attorney’) to take decisions on their behalf if they subsequently lose capacity. there are two types of LPAs:  (a) for personal welfare (which includes healthcare and consent to medical treatment); and  (b) for property and affairs.

Mental capacity – a person must be assumed to have mental capacity unless it is established that they lack capacity. an assessment of a person’s capacity must be based on their ability to make a specific decision at the time it needs to be made, and not their ability to make decisions in general. Under the Mental Capacity Act 2005 (England and Wales), anyone assessing someone’s capacity to make a decision for themselves should use the two-stage test of capacity:

  • Does the person have an impairment of the mind or brain, or is there some sort of disturbance affecting the way their mind or brain works? (it doesn’t matter whether the impairment or disturbance is temporary or permanent.)
  • If so, does that impairment or disturbance mean that the person is unable to make the decision in question at the time it needs to be made? a person is unable to make a decision for himself if he is unable to understand the information relevant to the decision, retain that information, use or weigh that information as part of the process of making the decision or to communicate the decision (whether by talking, sign language or any other means).

NICE Pathways – NICE Pathways are interactive topic-based diagrams which aim to provide users with a way to quickly view and navigate all nice guidance recommendations on a particular topic. a nice Pathway starts with a broad overview of a topic and allows the user to explore nice recommendations and advice in increasing detail. relevant topics are linked together forming a network of nice information. a nice Pathway provides a useful starting point for new users to a topic while giving specialists easy access to nice recommendations. NICE Pathways do not provide a comprehensive management pathway for individual patient care.

Palliative care – Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patient’s illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families;
  •  enhances quality of life and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage clinical complications.

Palliative care can be provided by a range of health and social care staff and may be done alongside treatment intended to reverse particular conditions.

(World Health Organisation)

Protocols – a plan or set of steps that defines how something will be done.

Quality Standards – Alliance members have agreed that, to avoid confusion, they will avoid using the term ‘quality standards’ in relation to end of life care other than for nice ‘quality standards’ and any ‘quality standards’ produced by the professional regulators (GMC, NMC, HCPC and GPHC) which describe how professional standards should be achieved.

Specialist Palliative Care – Specialist palliative care is the active, total care of patients with progressive, advanced disease and [of] their families. care is provided by a multi-professional team who have undergone recognised specialist palliative care training.

(Tebbit, National Council for Palliative Care, 1999)

Spiritual care – Spiritual care is that care which recognises and responds to the needs of the human spirit when faced with trauma, ill health or sadness and can include the need for meaning, for self-worth, to express oneself, for faith support, perhaps for rites or prayer or sacrament, or simply for a sensitive listener. Spiritual care begins with encouraging human contact in compassionate relationship, and moves in whatever direction need requires.

(NHS Education for Scotland, 2009)

Standard operating procedures – Detailed, written instructions to achieve uniformity of the performance of a specific function.

(International Conference on Harmonisation – ICH)