Authorisation for donation and transplantation in Scotland
Clinical guidance for gaining authorisation from a donor family
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Despite significant progress over the last decade there are still around 500 people waiting for a transplant at any given time in Scotland.
The Scottish Government consulted on ways to increase donation including moving to an opt out system. Following considerable support for the proposal, Scotland introduced a deemed authorisation (opt out) system for organ and tissue donation on 26 March 2021.
The Scottish Government published the Donation and Transplantation Plan for Scotland: 2021-2026, developed with the Scottish Donation and Transplant Group (SDTG), which will build on the progress made in recent years to improve transplantation and organ donation and sets out a number of recommendations to enable more of those people who desperately need a transplant to access one.
The plan complements the UK Organ Donation and Transplantation: Meeting the Need Strategy which sets the ambition for the next 10 years, building upon past successes while planning service improvements for the future. The new strategy, supported by all four UK Health Ministers, sets out the vision for the UK to be a world-leader in organ donation and transplantation.
Donation decision conversations and consent/authorisation rate
By nation and financial year April 2016 – March 2021.
|England||2660 (62.6%)||2839 (66%)||2782 (67%)||2804 (68.3%)||1918 (68.3%)|
|Scotland||270 (63.3%)||251 (56.6%)||228 (63.6%)||228 (64.9%)||165 (73.3%)|
|Wales||148 (63.5%)||159 (69.2%)||156 (76.9%)||141 (70.9%)||94 (69.1%)|
|N. Ireland||89 (64%)||78 (65.4%)||83 (63.9%)||100 (64%)||76 (78.9%)|
|UK*||3176 (62.8%)||3333 (65.5%)||3253 (67.2%)||3280 (68%)||2254 (69.1%)|
The table below illustrates the authorisation rates for donation after brain-stem death (DBD) and donation after circulatory death (DCD) by NHS Boards (1 April 2020- 31st March 2021).
|Health board||DBD||DCD||Total||Population||DBD pmp||DCD pmp||Total pmp|
|NHS Ayrshire and Arran||10||0||10||369,360||27.1||0.0||27.1|
|NHS Dumfries and Galloway||2||0||2||148,860||13.4||0||13.4|
|NHS Forth Valley||1||1||2||306,640||3.3||3.3||6.5|
|NHS Greater Glasgow & Clyde||13||4||17||1,183,120||11.0||3.4||14.4|
|NHS Orkney *||-||-||-||22,270||0||0||0|
|NHS Shetland *||-||-||-||22,920||0||0||0|
|NHS Western Isles *||-||-||-||26,720||0.0||0.0||0.0|
|Golden Jubilee National Hospital||0||3||3||-||-||-||-|
Notes on this comparison
- * Patients from these areas would be admitted to one of the main intensive care units on the mainland
- Latest population figures obtained from the Office for National Statistics (mid-2019) and modified to reflect boundary changes from Scottish Government.
- Area calculated from ONS postcode data.
Disparities in authorisation rates are multifaceted, and based on population demographics, numbers, and types of hospitals (e.g. regional neuro-surgical centres), and much more besides. Interventions to improve donation should continue to be a priority for all NHS Board organ donation committees and collaboratives.
Deceased donation is governed by the Human Tissue (Scotland) Act 2006 which was amended by the Human Tissue (Authorisation) (Scotland) Act (2019 Act). The primary aim of which was to introduce a system of deemed authorisation for transplantation. In cases where a decision of a potential donor regarding authorisation for donation has not been recorded on the NHS Organ Donor Register or elsewhere in writing then authorisation for donation for transplantation may be deemed, subject to certain exemptions.
A core principle underpinning the legislation is that every effort to establish the potential donors’ latest views about donation is undertaken (known as the 'duty to inquire') with no evidence of unwillingness.
The act also provides a legal framework which must be adhered to for the authorisation and carrying out of medical procedures to facilitate transplantation (known as 'pre-death procedures’). A pre-death procedure is defined as a medical procedure carried out on a person for the purpose of increasing the likelihood of a successful transplantation of a part of their body after death, and which is not for the primary purpose of safeguarding or promoting the physical or mental health of the person.
The following best practice and resources are relevant for approaching families throughout the UK. The National Institute for Health and Care Excellence (NICE) clinical guidance provides detailed recommendations on how to best approach the family of a potential organ donor.
As per the Guidelines for the Provisions of Intensive Care Services, Edition 2 (GPICS2): “The consultant leads on breaking bad news before handing over to the [specialist nurse] when it is clear that the family have accepted the inevitability of their loss AND are ready to consider what may happen next.”
The family approach is considered in three stages. The specialist nurse should be involved in all stages.
Breaking bad news
NHS Blood and Transplant (NHSBT) has developed a suggested model for breaking bad news and introducing the donation conversation which is loosely based upon a ‘Shakespearian tragedy’, and adopts a prologue and 3-act structure.
The language used in the following scenarios is specific to the Scottish legislation and was also provided in the Scottish masterclass training. The training is available as an interactive e-learning tool that will inform, teach, and lead participants through the new legislative requirements in a comprehensive and innovative way.
2. The duty to inquire (deemed example)
The law requires a discussion to take place with the potential donor’s family about potential donor’s view to ensure that donation doesn’t proceed where it would be against an individual’s most recent view. The specialist nurse will have checked the organ donor register and this provides the starting point of this conversation.
Individuals receive and process information in different ways, therefore using a variety of techniques during the donation conversation can aid a family’s understanding. As part of the family conversation sharing the information digital link (IDL) provides visual, consistent, core information and is available in many languages and provides a valuable resource for wider sharing with friends and family.
3. Opt out
There may be occasions where the care team will need to inform and explore with a patient’s family, a registered ‘opt out’ decision. It should be confirmed through the 'duty to inquire' conversation if this is the most recent view of the potential donor regards organ and tissue donation. The planning and communication of this conversation should be undertaken with the same attention to detail as all family discussions.
4. Pausing the organ and tissue donation conversation
With high public awareness levels, and over 50% of the Scottish population on the NHS Organ Donor Register it is welcomed that more families are raising the possibility of organ donation with healthcare professionals. Sometimes this can occur when active treatment is still in progress . Whilst it is important to recognise donation has been raised it is sometimes correct to pause with a supportive conversation and talk the family through the next steps of patient care including the possibility of donation.
A faith and beliefs declaration has been introduced on the NHS Organ Donor Register to provide assurance to registrants that their values in line with faith and beliefs would be acknowledged and discussed at the time of their death when organ and/or tissue donation is a possibility.
In Scotland, the Scottish National Blood Transfusion Service (SNBTS) provides a 24/7 tissue donation service. Tissue donor co-ordinators take referrals from all staff groups and clinical areas and will, if donors are assessed as suitable, undertake authorisation in compliance with the Human Tissue (Scotland) Act 2006 as amended by the 2019 act.