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Appendix A7

Report on findings from the UK Clinical Ethics Network Questionnaire, May 2003

Purpose of questionnaire and response rate

In January 2003 a seven page questionnaire was sent out to all Chairs of clinical ethics committees (CECs) / fora that were known to the Network (as a result of the work Anne Slowther carried out for the Nuffield Trust Report, December 2000 and through Ethox training programmes). The purpose of the questionnaire was to find out how CECs are operating - their structure and the range of work that is carried out by them. With this information the Network will be in a position to provide relevant support.

Fifty-three questionnaires were distributed. A letter of reminder was sent out mid March. Thirty-eight questionnaires were received back (a response rate of 72%). This is a pleasing response rate and provides the Network with a good base of information from a range of CECs.

Updating information about Committees

Of the thirty-eight CECs that responded to the questionnaire three informed the Network that the Committee was no longer active.

Therefore we know that 35 CECs are active and we have up to date details for our database and relevant information useful for the website. The information in this report therefore relates to the 35 active CECs who responded to the questionnaire.

However we know there are other active CECs although they have not responded to the questionnaire. We shall be contacting CECs from whom we did not receive a response in order to find out if they are still active and, if so, to update our information.

Occasionally Ethox becomes aware of new CECs (where contact is made to find out about training workshops) although the CEC has not heard of the Network. The profile of the Network should be enhanced so that CECs are aware of the Network and can benefit from it. We hope to achieve this with the introduction of the Network website.

Contacting CECs

Those who have responded to the questionnaire have provided the Network with the most appropriate contact point whose address and email will be put on the website to facilitate ease and speed of communication between Committees.

Composition of CECs and the support they provide
The largest CEC has 26 members, the smallest 6 members (although this CEC has only recently been formed). On average, the number of members of a CEC is 13.

The majority of CECs have legal, religious and lay representation:

  • 21 Committees have a legal member
  • 26 Committees have religious representation
  • 29 Committees have lay representation

Medical members of CECs outnumber nursing members by 2:1.

Meetings

Of the 35 CECs who responded, just under half have meetings every month, 7 have meetings quarterly and 5 meet bi-monthly. In most cases meetings are of between one and a half hours and two hours duration.

Interestingly, 24 of 35 CECs indicated that the majority of members attended the meetings. This is despite the fact that only a small minority of CECs pay for members’ expenses to attend meetings, or their time in attending. We can conclude from this that committee members feel that they are fulfilling a worthwhile function.

Functions of CECs

Twenty-three CECs replied that they frequently provide ethical support to individual clinicians. However formal ethics case consultation is unusual . This suggests that those responding to the questionnaire are indicating informal advice or retrospective review of cases. It would be useful to explore in more detail what is the range of ethical support.

Nineteen CECs state that they frequently contribute to Trust policies and guidelines. It would be useful if the expertise generated could be available for other committees and the website will indicate where CECs have contributed to particular policies / guidelines (www.ethics-network.org.uk/Committee/functions/functions.htm)

Only thirteen CECs stated that they frequently provide ethics education within the Trust.

Interpreting national guidelines is done infrequently by most CECs – only seven indicated that this is a function they performed frequently.

Risk management, eligibility of foreign nationals for NHS treatment and police access to patient records were indicated as other issues that CECs have become involved in. It is relevant to ask what is / should be the ambit of involvement in issues that are not exclusively clinical ethics. Should CECs become involved in ethical issues relating to management or ‘organisational ethics’?

Ethical issues that CECs are most frequently asked to advise on are withholding and withdrawing treatment, consent and DNR orders.

  • 17 CECs frequently deal with withholding and withdrawing treatment
  • 16 CECs frequently deal with issues of consent
  • 12 CECs frequently deal with DNR orders

Other areas that arise with reasonable frequency are advance directives, capacity and refusal of treatment.

However in response to the question – ‘which area of clinical practice do you find creates the greatest ethical difficulties for your Committee’, those areas identified tended to be those that are not dealt with frequently by Committees – genetic testing, assisted reproduction, accident and emergency, intensive care, and NHS targets.

A question for discussion is whether the Network should provide education and training in those areas that frequently arise before CECs, or should it concentrate on developing training for those issues that CECs indicate cause greatest ethical difficulty even though they may arise infrequently?

Financial and other support for CECs

Twenty-nine CECs indicated that they have administrative support – mostly minute taking, distribution of papers and arranging meetings (six do not receive administrative support).

Nineteen committees receive some financial help from the Trust (four receive funding from other sources e.g. profit from an annual ethics forum).

In only two Committees are members paid for their time, and in only eight are members’ expenses covered.

There were only 18 positive responses to the question ‘are non Trust members of your Committee indemnified?’. Nine said that they were not and eight did not respond to this question. This leaves lay members of Committees potentially liable and is an area of concern that the Network will be addressing.

Ethics training

Training of members of CECs has improved since the Nuffield Trust survey. Twenty-four CECs have at least one member with a qualification in ethics and twenty-six CECs indicated that one or more members have attended a non-Ethox training course. Just under half of positive responses stated that Committees receive expenses for training of their members – it would be useful to identify the form this training takes.

It is worth considering whether there should be a minimum standard of ethics training of an ethics committee as a whole and any minimum standards of training for individual members (as is the case with LRECs).

Communication between Committees

Twenty-two Committees replied that they have contacted / collaborated with other Committees and where they have done so collaboration is reasonably frequent – twelve stating that they have collaborated two or more times a year. The outcome has been positive – Chairs have reported a useful validation of advice.

Of those CECs that have not communicated with others six felt it was unnecessary and one was concerned with issues of confidentiality.

In order to encourage dialogue between CECs it should be clear who to contact and how to do so – the website will make this information readily available.

Points for further discussion

  • Should members of CECs receive expenses / payment?
  • Indemnity of non Trust members
  • Function of CECs – should they become involved with organisational ethics?
  • How much should CECs be involved in formal case consultation?
  • Training and education – should the network concentrate on those areas that frequently arise before CECs, or those issues that CECs indicate cause greatest ethical difficulty even though they may arise infrequently? Should there be specific training for case consultation?
  • Should there be a minimum standard of ethics training for an ethics committee as a whole and/or any minimum standards of training for individual members?

Copyright of Appendix A7 is held by The Ethox Centre