Ethical Framework for Donation after Brainstem Death

Royal College of Physicians of Edinburgh Response to UK Donation Ethics Committee (UKDEC)’S Consultation on Ethical Framework for Donation After Brainstem Death

The Royal College of Physicians of Edinburgh (“the College”) welcomes the opportunity to comment on the draft framework on Donation after Brainstem Death.  The College is a full member of the Academy of Medical Royal Colleges and Faculties of the UK and notes that the Academy hosts the UK Donation Ethics Committee.  The College considers that this is a good document that clarifies many points of discussion and will be useful to practising clinicians. However the emotional and ethical difficulties facing staff in Intensive Care continues to be underplayed in a document that understandably seeks to maximise opportunities for successful transplantation.

Specific comments follow:

1. Page 7 – refers to the rarity of organ donation and misses the opportunity to emphasise that organ donation is still unable to meet the requirement for transplantation.
2. To avoid generating confusion, it is essential that terms are used consistently.  In particular, on page 2 and throughout the document, the terms “brainstem”, “brain stem”, “brain death” and “brain stem death” are used.  This is partly historical (the 1976 Code of Practice used brain death in the title, later publications used brain stem death) and can be confusing, as can the acronyms.  For example, at the bottom of page 4 the acronym DBD is used for ‘Donation after brain stem death’ rather than ‘Donation after brainstem death’ – a clear glossary of definitions and some minor editing for consistency would be helpful.
3. At 45 pages the document is quite long and would benefit from an Executive Summary and separate list of all recommendations.
4. Para 1.1.9 – the College has some concerns if families are put under additional stress due to waiting excessively for BSD procedures to be completed for donation purposes.
5. Para 1.1.12 – the College is fully supportive of efforts to carefully manage end of life care where BSD may be the result, and particularly welcomes the requirement to consult sensitively with relatives.
6. Para 1.1.15 should cover the problem where the same two doctors are not available to do the second set of tests – both sets need to be repeated and this should also be made clear in para 2.5.3 since the apnoea testing will need to be repeated.
7. Would it be useful to state in para 1.1.16 why some patients got to the stage of BSD testing but did not satisfy the criteria?  In many units it is common practice for a consultant to perform a full set of tests unofficially ahead of the formal test to remove any doubt about the outcome for the sake of relatives.
8. Para 1.2.11 – in Scotland relatives give authorisation rather than consent – this is an important distinction.
9. Para 1.2.23 – the College believes it is important in such a document to also recognise the impact on Intensive Care staff of performing CPR and advanced life support on a patient confirmed as dead and  further discussion on this at a national level should be recommended.
10. Para 1.3.2 and 1.3.3 – the known life wishes of the donor should be respected and the team treating the patient should be supported to achieve them.
11. Para 1.3.7 – whilst accepting the flexibility benefits of allowing SN-OD to take over or participate in care after DBD, the team should be sensitive to the fact that the team in Intensive Care will have built up a relationship with the family who may be unduly distressed if care is transferred at this difficult time.
12. Para 1.3.11 – failure to achieve successful donation is a very sensitive issue and the College considers the recommendation to trigger a clinical incident report in each case would benefit from further discussion with relevant parties
13. Para 1.3.18 suggests that discussion with the family regarding organ donation commonly takes place after the first set of brainstem death tests.  Sometimes, however, family members may already have raised the issue or it may have come up incidentally.  This is often useful, as para 2.1.7 suggests.  Para 2.1.8 (repeated at para 2.2.5) emphasises the need for sensitivity here. 
14. Long contact model – in line with our comment 11, the College has some concerns about how and when the SN-OD would be introduced into the care team.  This must be handled sensitively and according to individual circumstances, ensuring that relatives are aware of options but do not feel coerced in any way
15. Para 2.5.3 – Fellows with significant Intensive Care experience of brain stem death testing advise that desaturation during apnoea testing is extremely rare using a Mapleson C circuit with PEEP and 100% oxygen. This should be a recommended approach.
16. In para 2.6.4 it would be of benefit to clinicians to have further clarification of how the SN-OD would approach this situation where the family disagree with the known wishes of the deceased.
17. In most parts of the document the bullet points are capitalized but occasionally they are not; this should be standardized unless the bullet points are quoted from a document where they were not capitalized.