Presumed Consent or Opt Out System for Organ Donation in Adults

This survey was sent to BACNN members in June 2008 and 104 responses were received

a)	It would make no difference to donation rates.	11
b)	I have no opinion either way	0
c)	The whole donation process sits uncomfortably with me	3
d)	It’s worth it because it would increase donation rates	59
e)	There are many other priorities before this one to improve donation rates	17
f)	It would make it easier to broach donation with families	62
g)	It would alienate families of potential donors	13
h)	It would more accurately reflect the donation wishes of the general population than the current system	44
i)	It undermines the concept of the donation being a gift	26
j)	It works fine in so many countries, why are we making such a fuss?	36
k)	I worry about vulnerable people with no families, little English, learning disabilities, the illiterate and those from culturally different backgrounds. How would they know about what it means and how to opt out?	58
l)	This is a major priority for donation to move forwards	43
m)	It is not consent at all, have we learned nothing from the Alder Hey organ retention scandal?	13
n)	I prefer the concept of mandated choice, where every adult has to register a wish of ‘yes’, ‘no’ or ‘I don’t know’	34
o)	Other. Please add your comments……..	42

Findings:

There were equal numbers of ‘positive’ (in favour of presumed consent) and ‘negative’ (not in favour) statements presented, with several neutral statements.

Perhaps unsurprisingly in a population of ICU nurses, no respondent revealed having no opinion either way. Few respondents chose statements that scored neutrally.

Many respondents selected both positive and negative statements, some even commenting that this genuinely reflected how they felt, despite realising it might appear contradictory.

A majority of respondents felt that presumed consent would make it easier to broach donation with families and also that it would increase donation rates. However, a majority also worried about the vulnerable in society.

A significant minority preferred the concept of mandated choice.

The free text section revealed strong, emotive and thoughtful responses. The greatest concern was that, whatever the consent system, publicity and education were of paramount importance. As a rule, ‘positive’ comments were fewer, but punchy and enthusiastic, e.g. ‘This is the answer’. ‘Negative’ comments were more prevalent, longer, and included profound concerns and justification, using words and phrases such as, ‘coercion’ ‘imposition’ ‘organs taken rather than….donated’ ‘contradicts….professional codes of conduct’ ‘reduced trust in the health professions’ ‘a fiction intended to serve a purpose’. One respondent even felt that, though (s)he carries a donor card now, (s)he would opt out should the system change, as the state does not own his/her body.

In order to gauge the strength as well as the nature of the feelings of the membership, the statements were scored subjectively prior to the survey as being neutral (0), weakly positive/negative (+/-1), positive/negative (+/-2) and strongly positive/negative (+/-3). Had all the statements been selected equally, there would have been an overall score of 0. The system was set up so that a final score would be achieved to reflect the strength of feeling as follows:

Weakly positive/negative: +/- 1 – 208

Positive/negative: +/- 209 – 624

Strongly positive/negative +/- 625 – 936

The final overall score was +173, showing the membership respondents to be overall weakly in favour of presumed consent. This result is tempered by a number of concerns, especially concern for vulnerable people who may fail to access or understand such a system

The presentation to the Taskforce clinical working party is available here (pps).

Comments on the findings and the process:

The response rate was around 5.5%. The exact figure is unknown as it is not clear how many emails actually reached the recipients. Scores of emails were returned as undeliverable to the BACCN office, but were not counted before they were deleted.. 2023 emails were sent. 1900 were assumed to have been received.
At the time of the Taskforce working party meeting in July, the response rate was 4.8% approx. Initially, this felt disappointing, but I am assured that commissioned public surveys are considered to be doing well if they achieve a response rate of 2%, so the civil servants at least were very impressed with our figure.

What is the response rate from the membership survey that goes out with renewal packs, I wonder?
The survey was sent out on 24 June 2008. The final response was received on 30 August, 2008.
A number of respondents replied without attaching a completed survey. Each was followed up but most did not attempt again.
Some respondents admitted they might not have responded had they not recognised the author’s name (therefore, in future, multiple authorship might help).
Many respondents had difficulty with the ‘tick’ boxes on their computers, some even quite heated about the fact they could not easily add in a cross. One respondent even printed the survey and returned by post.
A number of respondents replied to sender instead of to the researcher (as instructed).
One respondent helpfully suggested using surveymonkey.com in future for ease of both respondent and researcher!
Clearly, members for whom a current email address was not available were not included in the survey and a postal survey would have been more representative, however, time and money were not available for this.
Had the response rate been higher, my inbox would not have been able to accept all the responses and I should have wilted trying to process them all.
Many thanks to National Board for their comments and support with this survey. I believe the results were very useful for the Taskforce working party, and I hope others will benefit from them via the journal (in future). Also that the experience may help future membership surveys.

Kathy Dalley
BACCN Southern Region