LEGISLATION RELATING TO ORGAN AND TISSUE DONATION AND TRANSPLANTATION: ANALYSIS OF CONSULTATION RESPONSES
CHAPTER 5: BALANCING VIEWS ON ORGAN RETRIEVAL
The specific issues raised in the consultation paper are looked at in turn below.
The consultation stated:
The autonomy of the individual would not allow the family any right of veto, but it is recognised that the co-operation of the family is needed in order to obtain a social and medical history. Where organ retrieval went ahead in spite of objections by the family, relations between ICU staff and the transplantation team could be compromised, and there might be adverse media coverage which would have an adverse impact on the whole of transplantation. The legislation proposed for the rest of the UK is on the basis that consent gives authority to remove organs and tissues, but does not oblige that to happen.
The number of such cases of conflict between the wishes of the individual and the family is likely to be very small. Research shows that while in some parts of the country up to 78% of relatives can refuse to agree to organ donation where the views of the deceased are not known, most accept that organ donation should go ahead when provided with the evidence that that was the deceased's wish. It may also be re-assuring to point out that the proposed arrangements mean that where the deceased had left no clear wishes about organ donation but the relatives were vehemently opposed, organ retrieval would not go ahead because the next of kin who ranked first in the hierarchy would have the right to give the necessary authorisation.
5.1 BALANCING DIFFERENT VIEWS BETWEEN PARENTS
The consultation asked:
IN RESPECT OF CHILDREN, WHAT PROVISION SHOULD THE NEW LEGISLATION MAKE FOR SITUATIONS WHERE THE PARENTS TAKE A DIFFERENT VIEW ON WHETHER ORGAN RETRIEVAL SHOULD GO AHEAD, OR WHERE THE HOSPITAL HAS BEEN DEALING WITH ONLY ONE OF THE PARENTS?
Overall, 58 responses contained commentary of relevance to this issue. Such situations where parents disagreed on whether organ retrieval should go ahead were described by various respondents as, " difficult" (50 Legal), " extremely complex" (NHS/Med) and " very tricky" (58 Indiv). A host of different scenarios were painted with a few commentators suggesting that it was inappropriate to generalise as all cases were different and needed to be dealt with accordingly (54 Indiv, 58 Indiv), perhaps by developing a set of guidelines rather than by amending law (62 Indiv) or by dealing with complicated scenarios with Codes of Practice (37 NHS/Med).
Cases Where Parents Present/Contacted
The most common response was that in cases where both parents are present or have been contacted and cannot agree on whether retrieval should go ahead, it should not proceed (72% responses). Where a reason was provided for this view this focused on the sensitivity of such cases and the negative publicity which may follow (1 Indiv, 11 Indiv, 47 Educ). Other comments were that good practice should not permit the retrieval to take place (9 Indiv) and that as much time as available in such circumstances should be given to using an independent mediator to explore the issues with the parents (40 Educ).
By way of contrast, two respondents envisaged occasions where the retrieval should go ahead against the background of parental disagreement. For example, if the child's wishes were known then these could be the deciding factor (6 Indiv, 30 Prof Rep); or if time is pressing, then permitting the Medical Team to make the final decision (35 Indiv).
Where Hospital Has Been Dealing With Only One Parent
A range of views were presented. Most commonly stated was that if the hospital has been dealing with only one parent, then it should not be obliged to seek the other parent's views on organ retrieval (9 Indiv, 16 Indiv, 22 Acad, 25 Educ, 27 Educ, 30 Prof Rep, 41 NHS/Med). Reasons provided were that the timescale for organ retrieval would not allow it (25 Educ, 30 Prof Rep) and that seeking further views was inappropriate in the context of a shortage of organs (60 Indiv).
However, a range of other views were also presented and are summarised below:
Both parents have to be involved in the decision to retrieve organs (8 Indiv, 52 Educ)
Both parents should be involved in the decision if practical (10 Educ)
Organ retrieval should proceed on the authorisation of the parent most recently involved in the intimate personal care of the child (12 Indiv, 30 Prof Rep, 34 Pub Rep, 55 NHS/Med)
If the whereabouts of the absent parent are known then both parents' authorisation should be sought (45 NHS/Med)
"Every effort" should be made by the hospital to locate the absent parent (24 Prof Rep)
Efforts should be made to locate the absent parent (33 Pub Rep, 59 Indiv)
The hospital should take "reasonable" steps in the time available to find the absent parent (39 NHS/Med, 42 Indiv, 49 Legal)
"Everything should be done" to find the absent parent (43 Prof Rep)
If the parents are divorced/separated and the parent with whom the hospital has been dealing has completely lost contact with the child's other parent, then the present parent's views should prevail (44 Acad)
If one parent is deceased, then authorisation from the surviving parent is sufficient (44 Acad)
If one parent is absent then authorisation from the present parent is sufficient (17 Indiv)
Clearly, many different situations were envisaged by respondents, with one calling for legislation to permit flexibility in this regard (30 Prof Rep). In addition to these complexities, a few respondents questioned how the law would accommodate the relative views of cohabitees, unmarried fathers without parental rights and responsibilities (42 Indiv), foster and adoptive parents (53 Pub Rep), guardians (20 Pub Rep) and step parents (59 Indiv). A request was made for further clarification of the borderline between a "child" and a "mature child" (42 Indiv).
5.2 FURTHER PROOF FOR ADULTS AND MATURE CHILDREN?
The consultation asked:
IN RELATION TO ADULTS AND MATURE CHILDREN, SHOULD THE CARRYING OF THE DONOR CARD, OR REGISTERING HIS OR HER NAME ON THE NHS ORGAN DONOR REGISTER BE SUFFICIENT INDICATION OF THE INDIVIDUAL'S WISHES, OR SHOULD SOME FURTHER PROOF BE REQUIRED? IF SO, WHAT FORM SHOULD THAT FURTHER PROOF TAKE? HOW SHOULD VERBALLY EXPRESSED WISHES BE WITNESSED?
Further Proof Required?
Almost every respondent (59) provided a view on the first of these questions. Of these, 88% considered that no further proof should be required if adults and mature children are carrying a donor card or have registered their name on the NHS Organ Donor Register. One comment was that requiring further proof would only create uncertainty and doubt over the final outcome (3 Indiv).
A few respondents argued that no further proof should be required only if safeguards had been built into the registering process so that, unless renewed, registration expired after 5 years (42 Indiv), with the register easy to access for those who wished to change their mind and remove their name (42 Indiv, 51 Educ, 52 Educ).
A recurring theme was that the possibility for an individual to change their mind should be built into the system and their next of kin should always be contacted to ascertain whether this had been the case (28 NHS/Med, 31 NHS/Med, 39 NHS/Med, 53 Pub Rep). Again, the responses from the NHS and medical sector were the most cautious regarding children "under a certain age" with the suggestion that their registration/donor card be countersigned by their next of kin (28 NHS/Med, 31 NHS/Med).
One view was that if a person was carrying a donor card then no further proof of wishes should be sought, but if they had simply registered their wishes without carrying a card then further proof should be requested from their family (22 Acad).
Finally, in the situation where doubts have been expressed regarding the individual's capacity to make an informed decision then a few respondents considered that further proof of their wishes should be sought (18 Indiv, 61 Indiv).
What Form Should that Further Proof Take?
The responses described above highlighted that respondents tended to consider validation of the individual's wishes by their relatives as an appropriate form of further proof. In addition, 2 respondents offered views on testing the authenticity of the authorisation provided by the deceased. One comment was that the signature on the NHS Organ Donor Register should be compared with that on NHS hospital forms to check their match (20 Pub Rep). Another respondent considered that thumbprints, retina images and facial photos could all be used to gain assurance of the deceased's wishes (1 Indiv).
How Should Verbally Expressed Wishes be Witnessed?
Thirty-five responses referred to this issue. General comments included the remark that verbally expressed wishes should be witnessed in a fashion which would meet legal scrutiny if challenged (46 Indiv, 50 Legal). Another general view was that an "opt out" system would remove the need for consideration of this issue (47 Educ).
A multitude of suggestions was made for witnessing verbally expressed wishes. These are documented below:
Using digital/tape recording (1 Indiv, 60 Indiv)
Signed by witnesses (not in NHS) (4 Indiv)
Signed by 2 witnesses (20 Pub Rep, 27 Educ, 36 Indiv, 39 NHS/Med)
Signed by a witness (22 Acad, 29 Acad)
Witnessing should be in line with the next of kin hierarchy (14 Pub Rep, 15 Pub Rep, 32 Pub Rep)
Witnessed by 2 close relatives (53 Pub Rep)
Witnessed by 2 people, one of whom should be a relative (21 Indiv)
Witnessed by 2 people (17 Indiv, 35 Indiv, 43 Prof Rep)
Family to be consulted (28 NHS/Med, 30 Prof Rep, 31 NHS/Med)
Witnessed by one other non-medical adult (23 Faith)
Witnessed by any competent adult (25 Educ)
Witnessed by 2 disinterested people (24 Prof Rep)
However, several respondents considered that the notion of "formal" witnessing was inappropriate and not feasible in practice (10 Educ, 16 Indiv, 31 NHS/Med, 44 Acad). Others argued that witnessing verbally expressed wishes was difficult outside the hospital setting (33 Pub Rep) and hard to imagine (40 Educ, 42 Indiv) except within a legal setting (51 Educ).
5.3 CASES WHERE THERE ARE NO NEXT-OF-KIN
The consultation asked:
IF THERE ARE NO NEXT-OF-KIN, SHOULD ORGAN AND TISSUE RETRIEVAL TAKE PLACE ON THE BASIS THAT THE POTENTIAL DONOR CARRIED A DONOR CARD OR HAD REGISTERED ON THE NHS ORGAN DONOR REGISTER? IF THERE ARE NO NEXT-OF-KIN AND NO EXPRESSION OF WISHES BY THE DECEASED, SHOULD THERE CONTINUE TO BE A ROLE FOR THE "PERSON LAWFULLY IN POSSESSION OF THE BODY", OR IN THOSE CIRCUMSTANCES SHOULD ORGAN RETRIEVAL SIMPLY NOT PROCEED?
If No Next-Of-Kin but Donor Card or Registered on NHS Organ Donor Register?
Fifty-four respondents provided a clear view on this issue. All but one of these agreed that despite there being no next-of-kin, organ and tissue retrieval should take place on the basis of a donor card or wishes expressed in the NHS Organ Donor Register. Such expressions of intentions were described as forms of "advance directive" (28 NHS/Med, 31 Prof Rep) or a "living will" (21 Indiv).
Two respondents considered that retrieval should proceed in these circumstances only if the Donor Register was kept up-to-date (56 NHS/Med) or a separate register introduced for objectors (33 Pub Rep). Two commentators considered that despite there being no- one available to answer medical and behavioural questions about the deceased, on balance the risks to the recipient of the organ might justify proceeding in any case (41 NHS/Med, 44 Acad).
Role for "Person Lawfully in Possession of the Body" Where No Next-Of-Kin and No Expression of Wishes by Deceased?
Of the 56 respondents who commented, 52 provided a clear view on whether there should continue to be a role for a person lawfully in possession of the body in these circumstances. Responses were almost evenly split between those who considered a continued role to be justified (48%) and those who considered that organ retrieval should simply not proceed (52%).
One comment was that such a scenario rarely occurred (8 Indiv). Another was that the risk of next-of-kin appearing unexpectedly once the organ retrieval had been performed may outweigh any benefits of such a system (45 NHS/Med). However, a contrasting stance was that donation should take place if there was any possibility of sustaining or enriching the quality of another person's life unless there had been clear wishes expressed to the contrary (Indiv 42).
Clarity was requested on who the "person lawfully in possession of the body" should be (49 Legal). Various suggestions were made, including the Medical Director of the Trust or Health Authority (25 Educ); an Advocate (22 Pub Rep); a Coroner who was independent of the hospital (10 Educ); or a Medical Director in whose ward the death had occurred (49 Legal).
5.4 BALANCING WISHES OF DECEASED AND SURVIVING RELATIVES
The consultation asked:
SHOULD THE LEGISLATION ATTEMPT TO BALANCE THE WISHES OF THE DECEASED AGAINST THOSE OF THE SURVIVING RELATIVES, WHERE THESE ARE IN OPPOSITION?
Of the 61 respondents who provided a view, 75% considered that the deceased's wishes should prevail where these are in opposition to those of the surviving relatives. However, many of these acknowledged that whilst the legislation should provide for this, in practice, hospitals were unlikely to perform retrieval without the co-operation of surviving relatives (41 NHS/Med, 44 Acad) or if retrieval was likely to cause relatives severe distress (25 Educ, 30 Prof Rep, 40 Educ, 45 NHS/Med, 47 Educ).
One comment was that best practice would dictate that retrieval would not proceed " in the face of concerted and determined opposition" from relatives (9 Indiv). Another agreed that clinicians may not want to proceed in the face of heartfelt opposition from relatives despite wishing to abide by the principle of honouring the deceased's wishes (22 Acad).
A few respondents suggested that steps be taken to try to balance the wishes of the deceased and the surviving relatives where these were initially opposed. For example, efforts could be made to explain to relatives that the wishes of the deceased were being followed and the altruistic aspect of the donation emphasised (39 NHS/Med). Another suggestion was that surviving relatives should be encouraged to withdraw any opposition in a sensitive and careful fashion although the matter should be dropped where they had serious misgivings (45 NHS/Med).
A final view was that to protect medical and nursing staff caught up in circumstances where a donation has gone ahead despite the opposition of the family, then the legislation should be drafted to support them and the autonomy of any competent decision made (51 Educ).
5.5 REGISTER FOR OBJECTORS?
The consultation asked:
SHOULD THERE BE A SEPARATE REGISTER FOR THOSE WHO WISH TO RECORD THEIR OBJECTION TO ORGAN DONATION?
Overall, 57 responses addressed this issue with 52 containing a clear view in favour or against the establishment of such a register. Amongst these, views were almost evenly split with a slight majority (52%) in favour of a separate register for those who wish to record their objection to organ donation and 48% against.
Respondents provided various rationales to support their view, although one recurring comment was that although the register may be appealing in theory, in practice it may not be used much (11 Indiv, 19 Educ, 51 Educ).
Reasons Provided in Favour of a Separate Register for Objectors
The most commonly cited reason for favouring the register for objectors was that such a record would likely reduce any chance of a donation being made against the deceased's wishes (30 Prof Rep, 36 Indiv, 40 Educ). The register was seen as providing an extra check on an individual's wishes in cases of conflict (6 Indiv) and may encourage people to make sure they had made their wishes clear prior to death (8 Indiv). Such a system of recording objection to organ donation was seen as providing reassurance to objectors (20 Pub Rep, Acad 22) and perceived as enabling certain faith requirements regarding organ donation to be stipulated more explicitly (2 Prof Rep).
It was suggested that a further benefit of such a register may be that ICU teams and transplant coordinators would feel more able to approach surviving relatives of individuals not on the list of objectors for donation authorisation (28 NHS/Med).
Reasons Provided Against a Separate Register for Objectors
Three reasons dominated:
No Need/Unnecessary
Many respondents considered a separate register to record objections as unnecessary as they perceived that the current default position of not proceeding with organ retrieval unless an individual had registered such wishes or held a donor card as sufficient.
Too Complex
Several commentators warned against a separate register on the grounds that it would be too complex to operate, a "bureaucratic nightmare", especially if not kept up-to-date. A recurring comment was that it could lead to the confusing situation, " where both opt-in and opt-out philosophies co-exist" (29 Acad).
Too Costly
Another common theme was that such a register would be too costly to operate.
Other reasons against the proposal for a separate register for objectors were provided by a few respondents. Some considered that such a system was more in-keeping with an "opt-out system" (15 Pub Rep, 43 Prof Rep, 47 Educ) with one suggestion that the introduction of a register for objectors could be viewed as a move towards this (50 Legal).
Another view was that this register appeared to run against the ethos of encouraging more donations (3 Indiv, 52 Educ). Others considered there might be a danger of assuming an individual had agreed to donation when, in reality they had simply not placed their name on the objector's register (39 NHS/Med, 41 NHS/Med). A concern raised by one respondent was that any register for objectors would need to be totally confidential in order to prevent the occurrence of adverse publicity for those who had signed it (50 Legal).
Finally, from the practical viewpoint, a few respondents were concerned about the introduction of yet another register when perhaps the original NHS Organ Donation Register could simply be adapted to accommodate objections (9 Indiv, 30 Prof Rep, 47 Educ). Again, on a practical point, one view was that people just would not take the time and trouble to register their objection (61 Indiv).
5.6 INCLUSION OF FRIEND OF LONGSTANDING IN HIERARCHY OF RELATIVES?
The consultation asked:
SHOULD THE SCOTTISH LEGISLATION INCLUDE "FRIEND OF LONGSTANDING" IN THE HIERARCHY OF "RELATIVES"? IF SO, FOR HOW LONG SHOULD THE FRIENDSHIP HAVE LASTED FOR THESE PURPOSES?
In total, 55 responses addressed these issues with 51 providing a clear view on whether "friend of longstanding" should be included in this hierarchy. Amongst these just over half (55%) favoured the introduction of "friend of longstanding" into the hierarchy with 45% expressing their opposition.
Reasons Provided in Favour of Including "Friend of Longstanding" in the Hierarchy
Little commentary was provided by those who supported the proposition. One view was that anything which could increase the ways in which the wishes of the deceased could be discerned should be welcomed (39 NHS/Med). One suggestion was that this term could perhaps be used to cover people involved in same-sex couple relationships (60 Indiv). A few respondents argued that the inclusion of "friend of longstanding" was important as some people may have had little contact with their blood relatives listed in the hierarchy and/or be single (40 Educ, 43 Prof Rep).
Many respondents acknowledged that determining a precise duration for such a friendship to qualify for a place in the hierarchy was an "arbitrary" process, with a few stressing that in their view, the quality of the relationship was more significant than its duration (17 Indiv, 28 NHS/Med, 30 Prof Rep, 40 Educ). Nevertheless, some respondents attempted to specify a time threshold with most opting for friendships lasting "5 years" or "10 years". Only one suggestion was made for a duration of 2 years (27 Educ) with another specifying that one year could qualify a friend for a place in the hierarchy provided that the friend had lived with the deceased for that time (24 Prof Rep). One argument was that even with a set rule, some flexibility should be built in for exceptional circumstances (6 Indiv).
A point of clarification was made by two respondents who stressed that the length of friendship should refer to the period immediately preceding the individual's death and not some previous time in their lives (34 Pub Rep, 59 Indiv). Others highlighted what they saw as the need for proof of friendship to be required (35 Indiv, 53 Pub Rep). (Although according to one respondent, such friendship could not be proved (42 Indiv).)
Reasons Provided Against the Inclusion of "Friend of Longstanding" in the Hierarchy
The most common reason provided against the proposition was that "friend of longstanding" was too difficult to define, including judgements on both intensity and duration of relationships. Other objections to the proposition included:
Could create confusion (14 Pub Rep, 15 Pub Rep)
Could be open to challenge by others (42 Indiv)
An unnecessary complication (3 Indiv, 21 Indiv)
People may have more than one longstanding friend with each holding a different view (42 Indiv)
The deceased may have never discussed donation with their friend who may have known them for a long time but still not be aware of their preference (20 Pub Rep)
Not needed as already have "partner" and "person who has been living with the adult for 5 years or more" in the hierarchy (10 Educ, 33 Pub Rep)
SUMMARY POINTS
The majority view (72%) was that in respect of deceased children, where both parents cannot agree on whether retrieval should go ahead, it should not proceed
A recurring comment was that if the hospital has been dealing with only one parent, then it should not be obliged to seek the other parent's views on organ retrieval
88% of those who commented considered that no further proof of wishes should be required if adults and mature children are carrying a donor card or have registered their name on the NHS Organ Donor Register
Many suggestions were made for witnessing verbally expressed wishes with no single overarching preference emerging
All but one commentator agreed that in cases where there are no next-of-kin, organ and tissue retrieval should take place on the basis of a donor card or name on the NHS Organ Donor Register
Where there are no next-of-kin and no expression of wishes by the deceased, respondents were almost evenly split between those who considered a continued role for a "person lawfully in possession of the body" (48%) and those who considered that organ retrieval should simply not proceed (52%)
Where the wishes of the deceased and the surviving relatives are in opposition, 75% of respondents who commented thought that the deceased's wishes should prevail
Many respondents acknowledged that even though the deceased's wishes may take precedence in theory, in practice retrieval would not usually be carried out in the face of strong opposition from relatives
Views were almost evenly split on whether there should be a separate register for objectors with 52% of those who commented in favour and 48% against
A common reason for favouring a separate register for objectors was that such a record would likely reduce any chance of donation being made against the deceased's wishes
However, many respondents considered that there was no need for such a register, and that it would be too costly and complex to operate
A slight majority of those who commented (55%) favoured the inclusion of "friend of longstanding" in the hierarchy of relatives
Where a duration of such friendship was suggested, most respondents opted for 5 years or 10 years
However, many respondents considered "friend of longstanding" too difficult to define with its inclusion likely to cause confusion and to be open to challenge