Organ and tissue donation - authorisation requirements: guidance

Chapter 3: Practical context around donation

This chapter details the different types of donation, the principles of the role of the family and considerations around faith and beliefs.

Types of organ and tissue donation after death

49. There are two types of organ and tissue donation after death which are undertaken in the UK - donation after brain-stem death (DBD) (sometimes referred to as diagnosis of death using neurological criteria (DNC)) and donation after circulatory death (DCD).

50. The HTS Act does not make a distinction between the types of death, however the 'relevant time' concept means that it takes account of the fact that the authorisation process may take place either when the potential donor is alive (but expected to die), or is deceased. Authorisation for donation for transplantation can be deemed irrespective of the type of death.

Donation after Brain-Stem Death (DBD)

51. Donation after brain-stem death means donation which takes place following tests which diagnose and confirm death using neurological criteria. The patient's organ support, including mechanical ventilation, is supported while authorisation is established or sought and (where applicable) arrangements are put in place for organ and/or tissue donation.

Donation after Circulatory Death (DCD)

52. Donation after circulatory death describes organ and tissue retrieval which follows the planned withdrawal of life-sustaining treatment at the end of a critical illness when a decision is taken by the treating clinical team and with the agreement of those close to the patient (e.g. family and friends) that ongoing treatment will not benefit the patient.

Tissue only donation

53. Tissue-only donation can occur in a wider variety of settings than organ donation given the timing of the process is different. Tissue-only donation takes place after an acute catastrophic event that leads to acute cessation of circulation. In the case of tissue-only donation, donation is often (but not always) discussed with the potential donor's family only after death has been verified.

54. The HTS Act makes no distinction between organs and tissue for the purposes of authorisation for donation and applies equally to both.

Role of the Family

55. The HTS Act establishes the principle that the decision to authorise donation after death rests first and foremost with the donor themselves, where they are able to do so, and there is no power in the Act for others to change or overrule the recorded decision of the potential donor.

56. However, the family plays a key role in the donation process. The nature of the role with respect to authorisation will depend on a number of factors including whether authorisation has been expressly given by the potential donor, whether the circumstances are such that authorisation may be deemed, or whether the family will be asked to make the decision. Further information on the role of the family in different donation situations is given throughout this guidance.

57. Regardless of the particular role, sensitive communication and engagement with the family plays an essential part in supporting them throughout the donation process.

58. Family and friends are also asked to provide medical and social background information about the potential donor. This is separate to the requirements around ensuring authorisation is in place but is a related and important part of clinical practice so that clinical decisions can be made about the suitability of donation in light of all of the relevant information.

Faith and beliefs

59. Consideration of a potential donor's cultural and religious/non-religious beliefs is an important part of person-centred care. Such beliefs should be considered sensitively and as a decisive factor in determining the views of the potential donor regarding authorisation for donation.

60. Under the duty to inquire, the SNOD/SR/TDC must explore not only views about donation in general but also what the potential donor's views would be in the specific circumstances, as the HTS Act requires health workers to explore the potential donor's views as they would relate to the specific circumstances of death. This takes into account that some people might want to change their decision, or be unwilling to donate if the circumstances of their death manifest in a particular way – either after circulatory death or brain-stem death – for example, for religious reasons. Where the evidence provided indicates particular views regarding the circumstances of death, donation may only proceed if and insofar as this is consistent with the potential donor's views.

61. Without making assumptions, discussions should establish whether the potential donor was of a particular faith, or held certain beliefs or cultural views that may influence how and whether donation could proceed. The views of the potential donor should be discussed sensitively and openly in order to establish whether donation is able to proceed.

62. When registering a decision to authorise donation on the ODR, individuals can record if their faith or beliefs are important to them in relation to donation. The text on the ODR reads "I would like NHS staff to speak to my family and anyone else appropriate about how Organ Donation can go ahead in line with my faith or beliefs".

63. Where an individual has selected that this statement is applicable to them, the SNOD/SR/TDC should explain this to the potential donor's family as part of a discussion about the potential donor's faith and beliefs with respect to organ and tissue donation. The SNOD/SR/TDC should answer any questions and seek further guidance and support from faith representatives if required.

64. Where an individual has authorised donation (either expressly or through the operation of deemed authorisation) but their family disagrees about whether donation is supported by the potential donor's faith or belief, the SNOD/SR/TDC should explore any issues raised by the family and work with them to address any questions. The SNOD/SR/TDCs should support consultation with faith representatives to provide counsel or clarification on how donation may proceed whilst ensuring that any religious obligations are observed. For example, the family may wish to ensure appropriate end of life rituals are followed, should donation take place.

65. Some faith and/or belief communities may also have specific arrangements in place to support families and SNOD/SR/TDCs with appropriate, real-time advice that will facilitate the donation process in line with an individual's decision including, in some cases, dedicated telephone helplines. Where an individual has made clear that they wish for donation to go ahead in accordance with their beliefs and practices, the family should be made aware that this support is available and SNOD/SR/TDCs should ensure available services are utilised where this is indicated.

66. Hospitals also have Departments of Spiritual Care with faith trained co-ordinators and chaplaincy services which can help support conversations about donation with the family and SNOD/SR/TDCs.