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Publication - Consultation Paper

Organ and Tissue Donation and Transplantation - a consultation on increasing numbers of successful donations

Published: 7 Dec 2016
Part of:
Health and social care
ISBN:
9781786526540

This consultation seeks views on increasing the number of deceased organ donation and tissue donors in Scotland.

41 page PDF

640.6kB

41 page PDF

640.6kB

Contents
Organ and Tissue Donation and Transplantation - a consultation on increasing numbers of successful donations
Chapter 1 - Increasing Authorisation for Organ and Tissue Donation

41 page PDF

640.6kB

Chapter 1 - Increasing Authorisation for Organ and Tissue Donation

Introduction

This chapter explores whether an 'opt out' system would increase the number of cases where donation is authorised - either through the explicit permission of the donor who has died, through the support of the family, or where authorisation can be deemed to be in place. Under Scottish legislation (the Human Tissue (Scotland) Act 2006), organs and tissue can only be donated from someone who has died if either the person themselves 'authorised' donation before they died - for example by joining the NHS Organ Donor Register ( ODR) or by carrying a donor card - or if their nearest relative authorises the donation on their behalf.

The legislation does permit organs or tissue to be donated without needing the family's permission, if the person who has died has already authorised it. However, in practice, the support of the family is key to providing background information on the potential donor to enable the transplant surgeons to decide whether their organs or tissue are likely to be safe for transplantation. Therefore, currently donation would not proceed if the family were not content to authorise donation. Families are much more likely to authorise donation if their loved one was known to have wanted to be a donor. This is known as an 'opt in' system.

While authorisation is only one of several steps in enabling donation (and ultimately transplantation) to go ahead, it is important as each year a significant proportion of families refuse authorisation for their loved one's organs to be donated - in 2015-16 in 43% of cases in Scotland where family members were approached about donation authorisation was not given or the family overrode the authorisation the person had previously given themselves. That is despite surveys suggesting the great majority of Scottish people support organ donation [4] , even if many of them do not get around to joining the ODR.

There are a number of different models of consent/authorisation used in different countries throughout the world. Most countries either use an opt in system, like the current Scottish system (where explicit authorisation or consent is needed), or an opt out system (where donation can usually take place unless someone has explicitly stated that they don't want to be a donor) and there can be a range of variations within these systems.

The chart below shows that numbers of organ donors per million people in the population varies dramatically across different European countries, although it is not always the case that those countries with opt out systems have higher donation rates. This is because donation rates are affected by a wide range of factors - authorisation (or consent) for donation is just one of them.

Figure 2 - Deceased organ donors per million population in key countries - September 2014 [5]

Figure 2 – Deceased organ donors per million population in key countries – September 2014

The current opt in system

Keeping the current system remains an option. As noted in the introduction, there are a number of other initiatives being taken forward through the Scottish Donation and Transplant Group ( SDTG) to help increase donation rates, which do not need changes to the current legislation.

The current opt in system has the advantage of avoiding donation proceeding in cases where the family thinks the potential donor may have objected, but the donor never explicitly raised any concerns, or potentially in cases where it would cause distress to the family. Also, the current system - along with the SDTG's initiatives - has been shown to be effective at increasing numbers of donors and transplants, and is well understood by NHS staff and families. One survey this year also suggested that it may be more popular amongst the Great British public than an opt out system [6] . While our current system is an opt in system, people in Scotland can also already choose to actively make clear they do not wish to be a donor by registering to 'opt out' via the Organ Donation Scotland website.

A soft opt out system

There has already been significant debate about whether or not there should be an opt out system of organ donation in Scotland. International evidence as to whether or not an opt out system in itself makes any significant difference to numbers of organ (or tissue) donors is unclear and subject to debate.

Figure 3 - changes in number of deceased organ donors in Scotland, transplants and those on the waiting list over time [7]

Figure 3 – changes in number of deceased organ donors in Scotland, transplants and those on the waiting list over time

Rates of organ donation can be higher in countries with opt out systems, although it is often unclear whether it is the opt out system itself or other factors (such as developments in donation and transplant resourcing, prioritisation in hospitals or awareness raising amongst the public) which have helped increase donation rates. For example, Spain currently has the highest organ donation rates in the world (approx. 35 donors per million population) and is often quoted as an example of an opt out system working well. However, Spain only observed a significant increase in donation numbers after improvements to their infrastructure, and many years after the legal basis for opt out had been introduced. It is also worth noting that, due to differing donation procedures, a significant proportion of donors' organs in Spain are not transplanted [8] . In addition, as shown in Figure 2, Scotland and the rest of the UK already have higher donation rates per million population than some of the countries operating opt out systems.

A 'soft' opt out system was introduced in Wales in December 2015 and there have been mixed indications so far about the impact this legislative change has had. It is not yet clear if the new system is likely to lead to an overall increase in consent rates and donors. Data from NHSBT shows there were 25 deceased donors in Wales from April to September 2016, compared to 60 in 2014-15 and 64 in 2015-16. It is however too early to draw meaningful conclusions from the first short period of operation.

While the evidence from other countries is often inconclusive, given the increasing levels of public interest in developing an opt out system, the Scottish Government would consider the introduction of an opt out model if such a step would be supported by the general public and by stakeholders, and if it can be introduced in a way that will do no harm - either to the public perception of organ donation and trust in the NHS, or to the operation of processes required to take donation forward.

The existing UK NHS Organ Donor Register ( ODR) allows anyone in Scotland to either opt in or to register their wish not to donate (often referred to as 'opting out'), by confirming if they do or don't want to be an organ or tissue donor when they die (people can also opt in on a qualified basis if they are willing to donate certain organs or tissue, but not others). A change to an opt out system of donation could legally permit donation to proceed where authorisation can be 'deemed' on the basis that a person has not opted out by recording that wish on the ODR, or by otherwise noting in writing that they did not wish to donate their organs and/or tissue.

However, there would be likely to be significant concerns that such a rigid opt out system - sometimes called a 'hard' opt out system - might lead to people becoming donors even if they would not have wanted to. It may be they had not got round to opting out or were not able to understand that they needed to opt out.

Therefore, it is likely that a 'soft' form of opt out system would be more acceptable, one that provides additional safeguards to ensure donation does not proceed in cases where the family knew that their loved one did not want to be a donor. These safeguards would have to be structured in a way that was not overly complex and did not cause delays to the organ donation process. An overly complex or time-consuming process will lead to donations being unable to proceed. Too many administrative obstacles would also mean that there would be little or no difference in practice from the current Scottish opt in system.

Question 1 - what do you think of the principle of a soft opt out system for Scotland?

Question 2 - are there any changes you would make to the current 'opt in' authorisation system, other than moving to opt out?

Question 3 - where someone has joined the Organ Donor Register ( ODR) or indicated in another way that they wish to donate, what do you think should happen if the potential donor's family opposes the donation?

How soft opt out could work in Scotland

A workable soft opt out system would be expected to involve the following three 'steps' [9] :

1. high profile awareness-raising campaigns, for at least twelve months before introduction of the new system and on a regular basis after implementation. This would be designed to ensure as many people as possible think about organ and tissue donation, discuss it with their families and either opt in or, if they don't want to be a donor, opt out. It would be important to ensure these campaigns take account of the needs of people who either speak little or no English and people with disabilities or learning difficulties who may need extra support to understand the new system and/or to opt out if they want to. Efforts would also need to be made to allow people who may be harder to reach to opt out if they want to, including prisoners and others who may not have access to the internet. Education and training for a range of healthcare professionals and other professional groups involved would also be required during this time.

2. deemed authorisation - in the event of death of someone in hospital in circumstances where their organs or tissue could potentially be donated (and they were not in any of the 'excepted' categories under step three below), a Specialist Nurse for Organ Donation ( SNOD) or a Tissue Donor Co-ordinator or person who takes authorisation for eye donation ( TDC) would undertake the following checks to help them reach decisions:

  • if the person had registered as opting out, no donation could proceed (unless the family provided evidence that the person had confirmed in writing more recently that they had changed their mind);
  • if the person had registered as opting in, the family would be informed and SNODs/ TDCs would start the process of examining the feasibility of donation (unless again the family provided evidence that the person had confirmed verbally or in writing more recently that they had changed their mind);
  • if the person had not registered any decision on the ODR, a SNOD/ TDCs would approach the person's family to discuss the fact that the person was not on the ODR and therefore, in the absence of other information, would be deemed to have authorised donation. The family or friends would be asked if their relative/friend had expressed any objections to organ donation. If the person was not known to have expressed any objections then the assumption would be that donation could proceed; this would count as ' deemed authorisation';
  • however, there could potentially still be scope for donation not to proceed if it was clear that proceeding would cause distress to the family (and lead to them potentially refusing to provide the important background information which is needed in most cases to decide if it is safe to proceed with donation and subsequent transplant). In Wales, families can still refuse to allow donation to proceed even where the legislation would allow donation to proceed on the basis of deemed consent and this has happened already;
  • in the relatively rare cases where the person did not have any family or close friends - or at least none who were contactable within the necessary timeframe - then, if they did not come under any of the explicit authorisation categories below, donation could be considered to be authorised unless the person had opted out. However, in these cases, NHS staff would still need to consider whether or not they had sufficient information on the patient and his or her medical history to be sure the organs or tissue would be safe to transplant. In some cases, they may still be able to proceed where sufficient information is available from medical records.

Question 4 - if there was a soft opt out system, what do you think of the proposed checks above?

Question 4(a) - if you think these are not sufficient, what other checks would be needed (apart from those set out under step 3 below)?

Question 5 - in any opt out system, what do you think should happen if a deemed authorisation donation was likely to distress the potential donor's family?

3. In cases where someone dies and checks made by SNODs or TDCs suggest that they may fall into any of the following categories, donation (of either organs or tissue or both) could only be authorised with explicit authorisation, either from the person themselves or from their family:

  • someone who, over a period of time before their death, did not have capacity to take a decision on donation (see further details below on who this would cover);
  • a child under a certain age - we would still view it as appropriate for children of 12 years old or over to be able to self-authorise their own donation if they wish, but it may not be appropriate for someone's authorisation to be 'deemed' unless they are at least 16 years old;
  • anyone who had not been resident in Scotland for at least 12 months before their death. It is proposed that this would be a relatively straightforward assessment of whether or not their 'main' home had been in Scotland for 12 months or more, but they would not necessarily need to live there all the time - for example, students or members of the armed forces would count as resident if they were generally in Scotland over 50% of the year even if they stayed somewhere else during their holidays or had periods working abroad during that time.

We are acutely aware of the importance of ensuring any opt out system takes account of the rights of people who are unable to make their own decisions. In hospital immediately before their death, almost all potential donors would be considered 'incapable' of making their own decisions, but these separate explicit authorisation provisions would only be expected to apply where the person suffered from incapacity over a period of time before their death due to a mental disorder or physical disability - with the result that they cannot be considered to have been capable of taking a decision on organ donation for some time before their death. This would probably mean it is likely they could not have made their own decisions for more than a year before their death. However, it might also be appropriate for the system to allow the flexibility to require explicit authorisation as appropriate in certain cases where a person's lack of capacity was over a shorter period. This would recognise that they may not have had sufficient ability or understanding to make their views on organ donation known. We are therefore keen to hear your views on when a person should be classed as not having capacity to make their own decisions under this provision (see question 7 below).

If a potential donor falls into any of the three 'excepted' categories above:

  • Similar procedures would apply to the current ones in that donation would normally only be authorised in these circumstances where a family member provides authorisation on the person's behalf. The Human Tissue (Scotland) Act 2006 already defines who would be classed as the person's nearest relative (if there is no family member, the decision can be made by a friend of long-standing);
  • However, if the adult or child had opted out of donation then their view would be respected. If they had opted in, then that should be sufficient to authorise a donation if they were 12 years old or over (particularly for anyone who had been living in Scotland for less than twelve months or if the person had opted in at a time when they did have the capacity to make that decision). However, there would still be scope for donation not to proceed if it was clear that proceeding would cause distress to the family or if the family and/or medical records made sufficiently clear that the person did not have the capacity to understand what they were doing at the point they opted in and the family did not agree to authorise donation;
  • In cases where the person was not known to have expressed a view either way, the nearest relative would be asked to decide whether or not to authorise donation. As happens under the current system, they should base their decision on what they think their relative would have wanted in cases where it is possible to know this. In cases where it is not possible to know what the person might have wanted, their nearest relative would need to make their own decision;
  • In the case of children, it would be the child's parent(s) or another person with parental responsibilities and rights who would decide. For looked-after children, a local authority currently cannot authorise donation if no parent is available, although there may be a case for reconsidering this restriction - for example, in England and Wales where a person in a local authority has parental responsibility for a child in care then the local authority staff member can give consent to donation.

The potential approach set out above would involve SNODs, TDCs and/or clinicians (or in some cases eye donation specialists if only eye donation is being considered) needing to make a judgement about a potential donor's situation in order to decide whether or not they fall into one of the categories where explicit authorisation is required. They would normally be the ones deciding whether or not explicit authorisation would be required, although they would consult their senior managers in NHSBT or SNBTS if they were unsure in a particular case. Given the limited timescales available to seek authorisation for donation, it might not always be possible, for example, to be sure if a person had been resident in Scotland for more than twelve months or if they had sufficient capacity to make their own decisions about donation before coming to hospital. Therefore, we would propose that detailed guidance and training should be provided for SNODs, TDCs and other healthcare workers before the implementation of any opt out system. We would also propose that, where there is some doubt about whether or not a person falls into one of the 'excepted' categories, explicit authorisation should always be sought from the person's nearest relative.

Question 6 - if there was a soft opt out system, what do you think about the categories of people set out above for whom explicit authorisation would still be needed from the person themselves or family member?

Question 6(a) - if these are not sufficient, why do you think this?

Question 7 - in what circumstances do you think an adult should be viewed as not having the capacity to make their own decisions about donation and therefore should not be subject to any deemed authorisation provisions?

Question 8 - under what age do you think children should only be donors with explicit authorisation?

Question 9 - for children who are in care, what are your views on allowing a local authority which has parental responsibilities and rights for the child to authorise donation for the child if no parent is available?

Donations of less common types of organs or tissue under an opt out system

While this model of deemed authorisation could cover the more common types of organ and tissue donation, it may still be appropriate to only allow for more rare and novel types of tissue or organs to be donated with explicit authorisation from either the donor themselves or their family. For example, it is now possible for limbs to be transplanted; it is also possible to undertake facial tissue transplants, although this is not currently carried out in the UK. In the Welsh opt out legislation, there is a list of these rarer types of organs or tissue - referred to as 'excluded material' - where express consent is still required for it to be donated [10] . A similar provision could be considered in any future Scottish legislation to specify the types of organs and tissue where deemed authorisation either could or could not be used.

In addition, we would propose that any deemed authorisation approach would only apply to donation where this is for transplantation. It would not apply to donation for research purposes as this could still only happen with explicit authorisation from the donor or their family. While donation for research remains very important and there is significant demand for such organs, we do not feel this is sufficient to allow organs to be removed on the basis of deemed authorisation only.

Question 10 - in any opt out system, what provisions do you think should apply to the less common types of organs and tissue?

Figure 4 - Flowchart of authorisation pathways for potential organ and tissue donors [11]

Figure 4 - Flowchart of authorisation pathways for potential organ and tissue donors

Benefits and disadvantages of this soft opt out model

This process would have potential benefits in a number of cases by permitting organs to be donated in cases where a person is in favour of donation, but has not got around to signing up to the Organ Donor Register. It may also in some cases make things easier for relatives by taking away much of the pressure in making what can be a very difficult decision, but still giving them the chance to object if they know that their relative did not want to be a donor. If there is sufficient ongoing awareness-raising through a range of media to ensure that people who do not want to donate have sufficient opportunity to easily opt out, then it may be acceptable to authorise donation on the basis that the person has chosen not to opt out.

Table 1 below sets out the reasons given why families refused authorisation for organ donation in 2015-16. In 28 cases, the family said their relative had previously expressed a wish not to donate. The table also shows that in all the other cases, the donations could potentially have been 'deemed' to be authorised, assuming they did not fall into an excepted category where explicit authorisation was needed. However, it is likely that a majority of others would also not ultimately proceed because either a) explicit authorisation would be needed, b) because the family might override the deemed authorisation or c) due to medical reasons.

Table 1 - Reasons given why families did not provide authorisation - 2015-16

Reason No of DBD donors No of DCD donors
Patient previously expressed a wish not to donate 7 21
Family were not sure whether the patient would have agreed to donation <5 13
Family did not believe in donation <5 <5
Family felt it was against their religious/cultural beliefs <5 -
Family was divided over the decision - <5
Family felt the patient had suffered enough <5 7
Family did not want surgery to the body <5 5
Family had difficulty understanding/accepting neurological testing <5 <5
Family felt the length of time for donation process was too long <5 16
Family concerned that organs may not be transplanted - <5
Strong refusal - probing not appropriate <5 5
Other <5 11
Total refusals 23 85

Source - NHS Blood and Transplant ( NHSBT) - covers approaches in Scottish hospitals
Note - where fewer than 5 families refused for a particular reason, this has been marked <5 in order to help protect their identities
DBD donors are ones who have been diagnosed as brain dead, while DCD donors are ones who will be certified as dead after their heart stops beating and they have stopped breathing.

However, clearly such a deemed authorisation approach could carry risks. Deemed authorisation would be a legal authorisation. Nonetheless, it is still likely to be difficult to assume it is accepted that someone authorises their donation just because they have not opted out. The model above however aims to provide sufficient safeguards for the groups of people who are less likely either to be able to sufficiently understand the meaning or implications of opting in or out or may be unaware of the legislation due to not having been in Scotland for very long.

Figure 5 - numbers of families approached compared to those giving authorisation and actual donor numbers

Figure 5 – numbers of families approached compared to those giving authorisation and actual donor numbers

Source - NHSBT - Note that families are only approached where initial checks based on the information the Critical Care unit has suggest the person's organs are likely to be suitable for donation

Figure 5 above suggests that an opt out system has the potential to increase authorisation rates, which in turn could increase the number of people who actually go on to donate organs. However, it is impossible to judge to what extent authorisation or actual donations would increase as more people are likely to opt out of donation (under the current system, only 1146 people in Scotland had so far opted out at the end of September 2016) and some would still need explicit (rather than 'deemed') authorisation. Based on the Welsh experience, it is likely that a number of families would also still refuse to support the donation and clinicians would feel unable to proceed.

Regardless of the amount of awareness-raising, there are still likely to be a significant number of people not in any of the listed categories needing explicit authorisation who would neither opt in or out - this is often likely to be either because they don't want to think about death or don't think it will happen to them for a long time or just because they don't get round to it. In Wales, the level of awareness of their new opt out legislation is high as a result of their awareness-raising campaign. As a result, they have made clear to people that anyone who neither opts in or out of donation is still making an active choice to allow their organs to be donated. As at 31 March 2016, 165,129 people in Wales had opted out of donating their organs (just over 5% of the population), while 1,113,090 had opted in.

Surveys suggest the great majority of people do support donation (70% of people in an August 2016 survey [12] ). It could also be argued that if people have been given sufficient information, it is their responsibility to explicitly opt out if they don't want to be a donor, but there is still a possibility a model based on 'deemed' authorisation leads to people becoming donors when they actually would not have wanted to donate. This could risk being viewed by some as the state taking people's organs, rather than people actively choosing to give them. Any such perception could lead to a loss of trust in the NHS and the system more widely, which might actually lead to an increase in numbers of people choosing to opt out. It could also lead to conflict with families, which would be likely to put SNODs, TDCs and doctors in a very uncomfortable position and make it difficult for them to gather sufficient information from the family about the patient's lifestyle to be reassured the organs or tissue will be safe to transplant. In such cases, NHS staff would often decide not to proceed with donation even if the legislation permitted it.

As suggested above, a model which allows for authorisation if someone has not opted out, but still recognises and allows for donation not to proceed if it is likely to cause severe distress or conflict with the family should help increase authorisations to some extent, but avoid the opt out system being too rigid.

Pre-death tests for potential donors

There also needs to be consideration for potential Donation after Circulatory Death ( DCD) donors [13] to determine whether or not 'deemed authorisation' of donation should allow certain actions to be taken before death to help facilitate donation, such as blood tests, X-rays, urine tests or planning the timing of withdrawing the patient's life-sustaining treatment. If these were not allowed or were only permitted with explicit authorisation from the patient or their nearest relative then this is likely to prevent successful organ donation proceeding, even if the authorisation for donation could be deemed. Given time constraints in the organ donation process, it is vital that a number of tests have been carried out before treatment is withdrawn from a DCD patient to ensure that the organs are likely to be safe to transplant and are a good match for a transplant recipient. Organs need to be removed from the patient very soon after their death and be transplanted into a recipient within a few hours or a transplant will not be successful. DCD donation normally also requires NHS staff to plan the timing of withdrawing the patient's treatment (in discussion and agreement with the patient's family) in order to allow for the necessary tests and other checks to be carried out, for the recipients of each of the organs to be identified and for the team of retrieval surgeons to arrive at the donating hospital.

Currently, up until the point of death, for adults, the legislation governing support provided to and any tests carried out on patients, such as potential donors who are unconscious and therefore unable to express their own decisions at the time, is the Adults with Incapacity (Scotland) Act 2000. At the moment, a number of tests are carried out prior to death, although this currently only happens where either the donor themselves has previously made clear that they wish to be a donor or where the donor's family has authorised the donation on their behalf. In all cases, the SNODs or other medical professionals ensure the donor's family is aware of and comfortable with any tests being carried out. However, we are in the process of considering whether, in the future, people joining the ODR need to have more detailed information and a greater awareness about what tests might potentially be needed if they were to become a donor.

Currently in Scotland, a number of tests are already being carried out as part of the routine care of the type of patients who might go on to become DCD donors. All patients in an Intensive Care Unit already have an existing line placed in their artery which allows blood samples to be taken without needing further injections. Similarly all patients in Intensive Care will have had a urinary catheter inserted as part of their care so this also allows for urine samples to be taken in a non-invasive way. However, in a number of cases, additional tests will be needed, depending on which organs are being considered for donation, on the patient's medical circumstances and on, for example, any countries the potential donor had visited recently. Normally, this would not include tests which would be considered invasive. Tests such as bronchoscopies have very occasionally been carried out - and on the rare occasion this happens, the test is done with the support of relatives who have authorised the donation and in a way that minimises the possibility of the patient experiencing any discomfort. We would propose that, in future, bronchoscopies should not be carried out, unless it was clear that the donor themselves had indicated in advance that they were willing to consent to that sort of test.

Question 11 - which tests do you think medical staff should be able to carry out on a donor before they withdraw life-sustaining treatment to check if their organs or tissue are safe to transplant, both where a patient's authorisation for donation is 'deemed', as well as where the donation is explicitly authorised:

  • a) Blood tests? - for tissue typing to find a good recipient match, to detect any infections, such as HIV or Hepatitis, or for testing the patient's blood gases to check how well the lungs function;
  • b) Urine tests? - to check if the patient has any infections;
  • c) X rays? - to check for any undiagnosed medical problems;
  • d) Tests on a sample of chest secretions? - taken via a tube to test how well the lungs function. Chest secretions are often removed from patients in Intensive Care as part of their treatment to help make them more comfortable so would be removed anyway as part of their care - this would therefore involve testing samples of the secretions that have been removed;
  • e) Tests on the heart such as an ECG(electrocardiogram) or ECHO (echocardiogram) [14] ? - these tests check if the heart is functioning well.

Question 12 - if you answered no to some or all options in question 11, are there any circumstances when particular tests could be permitted?

Question 13 - where it is agreed a patient's condition is unsurvivable and it will not cause any discomfort to them, what do you think about medical staff being allowed to provide any forms of medication to a donor before their death in order to improve the chances of their organs being successfully transplanted, such as providing antibiotics to treat an infection or increasing the dose of a drug the patient has already been given [15] ?

Authorised representatives (also known as proxies)

In England and Wales, it is possible for people to nominate one or two representatives to make decisions about donation for them when they die. This is not an option at present in Scotland. In reality, very few people have nominated a representative (only 57 people in England and Wales had done so as at 31 March 2016) and including representatives in the chain of decision-making could make donation processes more complex and lengthy. Firstly, this is because it may be difficult to contact the representative(s), particularly if they have changed their contact details. Secondly, it is normally vital to keep the family involved as, unless they have been estranged from the donor for many years, they may have important information on the potential donor's history and lifestyle that will help doctors and SNODs or TDCs to decide if the person's organs or tissue are likely to be safe for transplanting. In addition, if a person is capable of nominating a representative, there are very few cases where they would not be capable of also deciding whether or not they wish to donate, so it is unlikely that a representative would be needed.

It has been suggested that looked-after children are one category of people who might benefit from being able to nominate a representative, although again if the child is able to make the decision to nominate a representative they are probably sufficiently mature to opt in or opt out (if they are 12 years old or over then they could be a donor under the current system without needing permission of a parent or other person with parental responsibility if they are signed up to the ODR). Local authorities are not currently permitted to authorise donation for children in their care (see the section on an opt out system).

In addition, people who are estranged from their families or who know their family have very different views about donation from their own may also not want family members to make decisions for them, but again if they are able to nominate a representative, they should also be able to make their own advance decisions about donation in almost all cases. In cases where no partners or family members are available, the legislation already permits a friend of long-standing to authorise organ or tissue donation.

Therefore, on balance, we do not think that authorised representatives would be necessary. The evidence from England and Wales suggests they are very rarely appointed and have not been used. The Scottish Parliament has already considered this point when it debated the Human Tissue (Scotland) Act 2006, but it decided, at that time, that appointed representatives were unnecessary. Given that including them in the process would create potential delays and conflicts with families, we propose not to include them, but would be grateful for views on this.

Question 14 - what do you think about allowing people to appoint one or more authorised representatives to make decisions for them?

Question 14(a) - if you think this should be allowed, in what circumstances do you think an authorised representative would be useful?

Question 15 - do you have any other comments which you think should be taken into account in relation to any Scottish opt out system?


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