Glossary of Terms

Glossary of terms for deceased organ and tissue donation

Words are important, no more so than when talking about subjects as emotive as the end of life.

Organ and tissue donation and transplantation, like any specialist area of medicine comes with its own language. This approved glossary of terms has been compiled by the National Organ Donation Committee (NODC) of NHS Blood and Transplant in association with the British Transplantation Society (BTS) to nudge us all into using the right words in the right way when talking to patients, families and each other as healthcare professionals.

Healthcare being devolved in Scotland, Wales and Northern Ireland means there are subtle but important differences in language across the United Kingdom. Terms that apply to specific nations within the UK are marked accordingly, with England, Scotland, Wales and Northern Ireland abbreviated to 'E, S, W and NI'. These abbreviations will appear next to terms where they are specific to these nations.

For many terms, two or more definitions are offered. All definitions in the Glossary can be considered acceptable for use; for some terms a 'NODC and BTS' approved definition has been written to either consolidate multiple previous definitions or where we think the text can and should be improved.

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A B C D E F H L M N O P Q R S T W

A

Appointed representative (W)

A person may have chosen when they had capacity in regard to organ donation, to appoint a representative(s) to act on their behalf under section 8 of the Human Transplantation (Wales) Act. When this is the case, the consent of the appointed representative is required.

See 'Nominated representative' for England (no equivalent in Scotland)

Reference: Human Transplantation (Wales) Act

Authorisation for organ donation (S)

The [Human Tissue (Scotland)] 2006 Act is based on the principle of 'authorisation', an expression which is intended to convey that people have the right to express, during their lifetime, their wishes about what should happen to their bodies after death, in the expectation that those wishes will be respected. Authorisation equates to the principle of 'consent' on which the Human Tissue Act 2004 is based.

See 'Consent for organ donation' for E, W & NI

Reference: Human Tissue (Scotland) Act 2006

B

Benefit

Best interests (E, W and NI)

An assessment of a person's best interests takes into account not only the risks and benefits of a proposed intervention, but also its wider emotional, psychological and social aspects.

See 'Benefit' for Scotland

References: HTA's Code of Practice A: Guiding principles and the fundamental principal of consent

HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

C

Clinical stabilisation

Cold ischaemic time

Consent for organ donation (E, W and NI)

Defined in the Human Tissue Act (2004) by reference to the person who may give consent. This is broadly either the consent of the person concerned, their nominated/appointed representative, deemed consent or (in the absence of any of these) that of a person in a qualifying relationship to them immediately before they died.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

Organ donation may only proceed with consent. There are three forms of consent:

First person consent when the individual themselves has consented to donation via the organ donor register, their appointed/nominated representative or via a last known decision (written or verbal)
Deemed consent where the person can be considered not to have objected to organ donation, isn’t in an excluded group and dies in a country/territory where deemed consent legislation applies
Family consent where a person in a qualifying relationship consents to organ donation on the patient’s behalf

Reference: NODC and BTS

See 'Authorisation for organ donation' for Scotland

Consent/authorisation rate

Percentage of families or nominated/appointed representatives approached for formal organ donation discussion where consent/authorisation was ascertained

Reference: Annual report on the potential donor audit 2021/22, NHSBT

The percentage of donation decision conversations where consent/authorisation was ascertained

Reference: Opt out summary report June 2021, NHSBT

D

Death

Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person and, thus, the definition of death should be regarded as the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe … therefore irreversible cessation of the integrative function of the brainstem equates with the death of the individual.

Reference: A Code of Practice for the Diagnosis and Confirmation of Death, Academy of Medical Royal Colleges

Deemed authorisation (S)

Deemed authorisation applies if a person who died in Scotland has not expressed, in writing, an organ donation decision either to opt in or opt out, is aged 16 or over, has lived in Scotland for longer than 12 months and is ordinarily resident there, and had the capacity to understand the notion of deemed authorisation for a significant period before their death.

Note that, in Scotland, a patient who has verbally expressed an opt in decision is included as a deemed authorisation, whereas a patient who has verbally expressed an opt out decision is not included.

See 'Deemed consent' for E, W and NI

Reference: Opt out summary report June 2021, NHSBT

Deemed Consent (E, W and NI)

Deemed consent means that all individuals over 18 in England, [Wales, Northern Ireland, Jersey or Guernsey] will be considered to have agreed to become an organ and tissue donor after their death, unless they made a decision to not donate their organs and/or tissue, i.e. they have opted out; they have nominated a representative to make a decision on their behalf after death about whether to donate; or are excluded from deemed consent. Deemed consent does not apply to people who lack mental capacity for a significant period before their death, children under 18 and people not ordinarily resident for at least 12 months immediately before their death

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

Deemed consent applies if a person who died in Wales, Jersey, Northern Ireland, Guernsey or England has not expressed an organ donation decision either to opt in or opt out, nominate/appoint a representative, is aged 18 or over, has lived in the country/territory in which they died for longer than 12 months and is ordinarily resident there, and had the capacity to understand the notion of deemed consent for a significant period before their death

Reference: NODC and BTS

See 'Deemed authorisation' for Scotland

Diagnosis and confirmation of death

The determination of death by health care professionals using either circulatory (cardiorespiratory) criteria after cardiorespiratory arrest, or neurological criteria (DNC) in mechanically ventilated patients after devastating brain injury.

The procedures required to satisfy these criteria are set out in the 2008 Academy of Medical Royal Colleges’ Code of Practice for the Diagnosis and Confirmation of Death (AoMRC 2008) and for infants less than 2 months old in whom death is being diagnosed by neurological criteria, in the 2015 recommendations of the Royal College of Paediatrics and Child Health (RCPCH 2015).

Reference: Donation Actions Framework

Directed donation

Direct recovery and perfusion (DRP)

Donation actions

Donation after brainstem death (DBD)

A. Organ donation that takes place following the diagnosis of death using neurological criteria (DNC). In DBD, deceased donors have intensive care treatments continued after death has been confirmed so that the heart, kidneys and other organs are supported, optimised and remain functioning up to the point that the donor's organs are retrieved.

Reference: Donation Actions Framework

B. A form of organ donation in circumstances where a patient, whose death has been diagnosed and confirmed using neurological criteria, continues to be ventilated. This keeps the heart beating and blood circulating after death, until after donation takes place.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

C. DBD is a familiar acronym for 'donation after brain stem death'. It is commonly used to describe deceased organ donation following the confirmation of death using neurological criteria as set out in the Academy Code of Practice.

Reference: Ethical framework for donation after confirmation of death using neurological criteria

D. Donation of organs after a diagnosis of death using neurological criteria (DNC). In DBD, deceased donors have intensive care support continued after death is confirmed so that the heart, kidneys and other organs are supported, optimised and remain functioning up to the point that the donor's organs are retrieved. Organ retrieval can be planned for a time suitable to the retrieval team, intensive care and the donor’s family.

Reference: NODC and BTS

Donation after circulatory death (DCD)

A. Organ donation that takes place following the diagnosis of death using circulatory criteria

Controlled Donation after Circulatory Death (DCD). In the UK, DCD involves a mechanically ventilated patient with overwhelming single organ failure, usually the brain, where a decision is made to withdraw life-sustaining treatment. Once consent for organ donation is confirmed following discussion with the patient’s family by a Specialist Nurse for Organ Donation (SNOD), a surgical retrieval team is mobilised. 8 Withdrawal of life sustaining treatment only commences once the surgical team is prepared in theatre and recipients for the organs have been identified. This type of DCD is called ‘controlled’ DCD because the death is expected, and the surgical team are already prepared.
Uncontrolled Donation after Circulatory Death (uDCD). A version of DCD carried out in other countries and historically in specific centres in the UK. It involves organ retrieval following an unexpected death, hence the term 'uncontrolled' compared to a planned, 'controlled' withdrawal of life-sustaining treatment. The usual case involves failed cardiopulmonary resuscitation either in the Emergency Department or in the community. Currently, this version of DCD is not practised in the UK but a pilot in Edinburgh occurred in 2014-2015 [and a research program is being established in Addenbrooke’s Hospital, Cambridge in 2023]

Reference: Donation Actions Framework

B. A form of organ donation in circumstances where the deceased donor was not ventilated at the time of death. Donation therefore occurs after death is diagnosed and confirmed using cardiorespiratory criteria. This is described as controlled when treatment has been actively withdrawn within a hospital setting or uncontrolled where a patient has experienced an unexpected cardiac arrest from which they cannot be resuscitated

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

C. DCD is a familiar acronym for 'donation after circulatory death'. It is commonly used to describe deceased organ donation following the confirmation of death using circulatory (cardiorespiratory) criteria as set out in the Academy Code of Practice

Reference: An ethical framework for donation after confirmation of death using neurological criteria

D. Donation of organs after the diagnosis of death using circulatory criteria. In 'controlled' DCD, as currently practised in the UK, deceased donation follows a planned withdrawal of life sustaining treatment and the confirmation of the death. If a patient in these circumstances is believed to be willing to donate after death, treatment withdrawal is planned for a time and place that facilitates organ retrieval. Due to the lack of a circulation, organs must be retrieved within a few minutes of death to be suitable for transplantation.

Reference: NODC and BTS

Donation decision conversation

Donor

Donor Family Care Service

The Donor Family Care Service are a team of administrators, led by the Chief Nursing team responsible for donor family care post donation and managing donor records across the UK. The team write to families with the outcome of their loved one’s donation, provide updates on recipients when requested, facilitate recipient and donor family correspondence and signpost to bereavement services and additional support resources.

Reference: Donor Family Care Service website

Donor optimisation

A. Interventions in a consented potential donor to increase organ utilisation and optimise transplant outcomes

Reference: Donation Actions Framework

B. Interventions conducted after the diagnosis of death using neurological criteria and in a consented/authorised DBD donor but before organ retrieval has commenced, to facilitate the donation of organs in the best possible condition

Reference: NODC and BTS

Duty to inquire (S)

The duty to inquire reflects current good practice whereby a discussion takes place with the potential donor's family about donation, including about the potential donor's views about donation, to ensure that donation doesn't proceed where it would be against a person's wishes.

The Human Tissue (Scotland) Act requires that certain checks are undertaken before the carrying out of any pre-death procedure or retrieval can take place to determine a potential donor’s status, any decisions which they may have recorded, and their views about donation and pre-death procedures. The duty to inquire may only be carried out by a health worker, which in most cases will be a SNOD/SR/TDC.

Reference: Guidance on deceased organ and tissue donation in Scotland: Authorisation requirements for donation and pre-death procedures

E

Eligible donor

End of life care

A. Care delivered by health care professionals to a potential or actual donor encompassing the time before and after death.
Donation Actions Framework

Reference: Donation Actions Framework

B. Care delivered by healthcare professionals to a patient approaching the end of life with a focus on relief of symptoms, maintaining dignity and honouring the individual’s end of life decisions.

Reference: NODC and BTS

F

Family

The term family should be taken to mean people involved in the end of life care of an individual, who may be able to provide information about them and their decision with regard to organ and tissue donation.

Family encompasses those in a qualifying relationship to the deceased person immediately before death and may also include other family members, close friends and those who may have been familiar with the faith and beliefs of the potential donor.

Reference: Donation Actions Framework

H

Human Tissue Authority (HTA) (E, W and NI)

A non-departmental ('arms-length') public body of the Department of Health and Social Care that regulate organisations that remove, store and use human tissue for research, medical treatment, post-mortem examination, education and training, and public display.

They also give approval for organ and bone marrow donations from living people. The Human Tissue Act 2004 led to the establishment of the Human Tissue Authority and it’s regulation of the removal, storage and use of human tissue including for organ donation.

Reference: Human Tissue Authority website

L

Last known decision (E and W)

In every case where organ and tissue donation is a possibility, the Specialist Nurse should determine whether the potential donor has made a decision with regard to organ and tissue donation.

The Specialist Nurse should seek to establish the most recent decision of the potential donor in conversation with their family, i.e. the decision in force immediately before their death.

See 'Not unwilling' for Scotland

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

M

Moment of honour

N

National Organ Retrieval Service (NORS)

Nearest relative (S)

The nearest relative can present information and evidence of the deceased wishes if they are not recorded (or if they have changed since being recorded), authorise donation for those to whom deemed authorisation would not apply, authorise donation of organs and tissues for purposes other than transplantation (education, research and audit) and/or authorise the donation of excepted body parts. The 2006 Act established a list of nearest relatives in order of precedence.

See 'Qualifying relationship' for E, W and NI

Reference: Human Tissue (Authorisation) (Scotland) Act 2019

Neurological death testing rate

Non-therapeutic elective ventilation (NTEV)

Nominated representative

A person appointed by an individual to represent them after their death for the purposes of activities under the Human Tissue Act for which consent is required. A nominated representative may be entitled to consent to, or refuse to consent to, the removal, storage and use of the body or tissue for any of the scheduled purposes, other than anatomical examination or public display.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

Normothermic regional perfusion (NRP)

An in-situ organ preservation technique in donation after circulatory death whereby an external circuit collects heparinised blood from the right atrium and returns it via a pump into the abdominal aorta allowing abdominal +/- thoracic organs to be perfused with normothermic, oxygenated blood.

Techniques to prevent restoration of cerebral perfusion are mandatory. When NRP is isolated to abdominal organs only it is known as A-NRP. When NRP includes the thoracic and abdominal organs it is known as TA-NRP.

Reference: NODC and BTS

Not unwilling

Novel transplants

O

Organ

A differentiated part of the human body, formed by different tissues, that maintains its structure, vascularisation and capacity to develop physiological functions with a significant level of autonomy. Part of an organ is also considered to be an organ if its function is to be used for the same purpose as the entire organ in the human body, maintaining the requirement of structure and vascularisation.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

Organ donation

A. The act of giving human tissue, cells, organs or part organs for a scheduled purpose [including transplantation], either during life or after death.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

B. The altruistic act of giving an organ in life (living organ donation) or after death (deceased organ donation) to facilitate a transplant(s).

Reference: NODC and BTS

Organ Donor Register (ODR)

A confidential, computerised national database managed by NHS Blood and Transplant (NHSBT), which holds details of people who have signed up to become organ donors in the event of their death. It also holds details of people who have stated they do not want to donate their organs after their death. The register is used after a person has died to help establish whether they wanted to donate and if so, which organs.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

Organ recovery procedures

Strategies and interventions that seek to repair organ injury, often caused by the dying process, thereby increasing organ utilisation and optimising transplant outcomes. At present these procedures take place either during organ retrieval in the donor after death (in-situ) or on the organ following retrieval from the donor with machine perfusion (ex-situ).

Reference: Donation Actions Framework

Organ retrieval

Ordinarily resident

A potential donor will be "ordinarily resident" in Scotland, England, Wales etc when that residence is lawful, adopted voluntarily, and for settled purposes as part of the regular order of their life for the time being. Residence can be of long or short duration, but deemed authorisation will not apply unless someone has been resident for at least 12 calendar months before dying (England and Wales) or when end of life discussions are taking place (Scotland).

Reference: NODC and BTS

P

Parental responsibility (England and Wales)

If someone under the age of 18 dies in England and Wales, those with parental responsibility would be approached about organ donation and given the opportunity to consent on their child’s behalf.

All mothers and most fathers have legal rights and responsibilities as a parent - known as 'parental responsibility'. A mother automatically has parental responsibility for her child from birth. A father usually has parental responsibility if he's either married to the child’s mother or listed on the birth certificate. Unmarried fathers can also get a parental responsibility agreement from the mother or by court order. Same-sex partners will both have parental responsibility if they were civil partners at the time of the treatment, eg donor insemination or fertility treatment.

For same-sex partners who are not civil partners, the 2nd parent can get parental responsibility by either applying for parental responsibility if a parental agreement was made or becoming a civil partner of the other parent and making a parental responsibility agreement or jointly registering the birth.

Reference: Parental rights and responsibilities, gov.uk

Parental responsibilities and rights (Scotland)

If a child under the age of 16 dies in Scotland, those with parental responsibility would be approached about organ donation and given the opportunity to consent on their child's behalf.

All mothers automatically get Parental Responsibilities and Rights (PRRs) for their child. A man gets PRRs if they are married to the mother at the time of the child's conception or subsequently. If a man is not married to the mother, [he] can obtain PRRs by jointly registering the birth with the mother, completing and registering a Parental Responsibilities and Rights agreement with the mother or obtaining a court order.

In relation to same sex parents, the child's mother receives PRRs as does any second female parent if she was married or in a civil partnership with the mother at the time of the insemination/fertility treatment; or she is named as the other parent on the child's birth certificate; or she completes and registers a Parental Responsibilities and Rights agreement with the mother.

Reference: Parental rights and responsibilities, gov.uk

Potential DBD donor

Potential donor

A. Every human source, whether living or deceased, of tissue, cells, organs or part organs.

Reference: HTA's Code of Practice F Donation of solid organs and tissue for transplantation (Part 2)

B. Patients for whom death was confirmed following neurological tests or patients who had treatment withdrawn and death was anticipated within a time frame to allow donation to occur.

Reference: NHSBT Organ and Tissue Donation and Transplantation Annual Activity Report

Pre-death procedure (Scotland)

A medical procedure which is carried out on a person for the purpose of increasing the likelihood of successful transplantation of a part of their body after their death and which is not for the primary purpose of safeguarding or promoting the physical or mental health of the person. The Human Tissue (Scotland) Act makes provision for two different types of pre-death procedures - Type A and Type B procedures - to be undertaken to facilitate donation, as long as certain requirements are met.

Type A procedures are those which are generally considered as routine procedures which would be needed to enable deceased donation to progress.

Type B procedures are less routine and are generally more invasive.

Reference: Guidance on deceased organ and tissue donation in Scotland: Authorisation requirements for donation and pre-death procedures

Prolonged time to asystole

Q

Qualifying relationship (England, Wales and Northern Ireland)

The relationship to the deceased of a person/s who can give consent for the removal, storage and use of organs and tissue from the deceased person's body for scheduled purposes in certain circumstances, or provide information that would lead a reasonable person to conclude that a potential donor would not have consented in circumstances where consent could be deemed.

Those that are in a qualifying relationship are: a spouse or partner; a parent or child; a brother or sister; a grandparent or grandchild; a niece or nephew; a stepfather or stepmother; a half-brother or half-sister; a friend of longstanding.

Reference: Guidance on deceased organ and tissue donation in Scotland: Authorisation requirements for donation and pre-death procedures

R

Referral rate

S

Specialist Nurse in Organ Donation presence rate

Specialist nurse / requester in organ donation (SNOD/SROD)

A senior nurse who is responsible for facilitating the entire donation process from initial donor referral to completion of organ retrieval, by working in close conjunction with all staff in critical care areas and donor family members.

This includes ensuring that donation proceeds in line with appropriate legislation and national policies and procedures, supporting families of critical care patients, obtaining all relevant information enabling transplant centres and tissue establishments to assess the suitability of potential donors and provide expert advice to health care professionals. Specialist Nurse is the preferred term to encompass both the SNOD and SROD roles.

Reference: NODC and BTS

Stand down of donation

Suspected neurological death

T

Tissue

Transplantation

W

Warm ischaemic time

Withdrawal of life sustaining treatment (WLST)