31 12 2012
Re: Consultation on the Human
Transplantation (Wales) Bill
Dear Mr Drakeford,
Above all I want to emphasise the vital need
to maximise organ donation. The concerns expressed below are
entirely directed at the proposed bill which is unlikely to
increase donation rates, a point now tacitly admitted by the
minister concerned , and may well make matters worse. My intention
is to avoid damage to the donation process which has seen a
great advance in the last few years..
Although I am both the Chairman of the
Abertawe Bro Morganwg Organ Donation Committee and Vice Chair of
the Clinical Ethics Committee I am responding to the request
for consultation in a personal capacity. I am doing this in part
because of previous arithmetical arguments as to the level of
support for the bill being based on the number of returns for and
against. It was clear that if an organisation provided proforma
letters to its members to sign individually those letters would be
counted as individual submissions whereas the considered opinion of
a large group with special expertise which provided one
submission via its chairman would be counted as one submission.
- a. The “elephant in the room”
which continues to be ignored is that both presumed and deemed
consent are oxymorons. Consent can only be legally and ethically
meaningful if it is contemporaneously informed. However much
publicity is given informed consent can never be assumed for an
individual. This bill is in fact proposing non consensual
donation. The name of the process is therefore mendacious and
manipulative. It sets out to mislead the public from the outset and
therefore cannot have public confidence except by way of
ignorance.
b. The notion that
government can proceed by deemed or presumed consent is very
dangerous ; for instance why not presume if a voter does not attend
a ballot then it be assumed that they accept the status quo?
- Contrary to that stated by Welsh Government
there is not robust data to support the concept of
presumed consent as a route to increased donation. Indeed in
their own publications they refer to robust data in the
same paper as that giving different levels of expected benefit.
This is an intrinsic contradiction inconsistent with
“robust” data. There is an increasing appreciation that
data the from the Spanish presumed consent process has been
widely misquoted . The increase in donation rates in Spain
occurred about ten years after the bill was introduced and followed
extensive investment in the donation process. The demographics of
the health service, ITU bed numbers and head injuries are
very different in Spain and in fact vary across Europe. In this
context it is essential to note that the UK has an appalling record
in the number of ITU beds per head and as increased donor numbers
will put extra pressure on those beds other patient
categories will suffer. No allowance has been made for this need.
It is all to easy to assume post hoc propter hoc, and if this bill
had been introduced in 2007 then the efforts of the organ donation
taskforce in raising the donation rate by 48% in four years would
have been ignored and the increase ascribed to the bill not
to other more pertinent measures including increased publicity.
This increase has taken up a lot of “slack in the
system” and any further increase will be correspondingly more
difficult to achieve.
- NHSBT has identified areas within Wales where
there is a significant failure to identify donors. If the money set
aside for the Principality wide mechanism now proposed was
concentrated in those areas the expected outcome would be reached
sooner and more effectively.
- There is an increasing swell of concerned
public opinion about the bill’s proposals with many anecdotes
( some of which fall within my direct personal experience) that
potential donors are withdrawing from the organ donation register.
NHSBT organ donation register data on this are difficult to
interpret as the reporting process altered about the time of the
bill’s announcement but they can be interpreted as supporting
this anxiety . There is understandable concern that what was
previously considered as a gift similar to blood transfusion
has now, at the state’s behest, become a right of the
state to take not a choice of the donor to give. A major part
of the increase in donation rates is due to the inception of
donation after cardiac death. This process only applies in 4
countries of the EU and is illegal in many . It has been difficult
enough to ensure that clinical staff understand and support the
concept . When the general public become more aware of it ,
especially in the context of assumed consent , disquiet will be
become still stronger. Although some organisations notably the BMA
have been seen to support the bill nationally there is clear
evidence that within Wales that support is not shared and an
informal poll of 18 renal specialists in Wales revealed only one in
favour. It is unfortunate that it was at the national BMA meeting
held in Cardiff when the supporting vote was
proposed by a Welsh doctor and then announced. This gave a
spurious validity to positive feeling amongst Welsh
doctors.
- The Human Transplantation (Wales) Bill
includes the following provision at
its sub-clause 5(3) in respect of an ‘excepted adult’,
i.e. a deceased person to
whose mortal remains the law, if enacted, will not apply:
‘(b) an adult
who has died and who for a significant period before dying lacked
capacity to understand the notion that consent to transplantation
activities can be deemed to be given; and for this purpose a
significant period means a sufficiently long period as to lead a
reasonable person to conclude that it would be inappropriate for
consent to be deemed to be given’
A rational adult being, by virtue of their rationality, unable to
understand the
notion of an oxymoron such as "deemed consent" (except as an
intellectually
invalid abstraction) the bodies of the majority of potential
‘donors’ would
automatically be made unavailable for transplantation
purposes by the
wording quoted. My own body would certainly be unavailable
under such
wording.
6
The estimated costs of the scheme have varied depending on what is
included, but do not include the costs of
inevitable challenges all the way to the Supreme Court. The
sequential subjectivity of the definition of ‘excepted
adult’ that is quoted above is itself remarkable, quite
unusually vague, and open to challenge accordingly in almost all
conceivable circumstances. We fear that, as a consequence only the
lawyers will benefit.
In summary the bill is defective in many ways, it is the
consequence of political initiative in the face of
professional and public disquiet. There is little evidence that it
will increase donation rates and the strong negative
publicity it has already attracted gives cause to expect the
opposite. There are also better and cheaper ways to go
forward.
D.B.
Webb
Cowbridge